One of the things I’d love to develop here on The Rest Room is a sense of community.
When you live with a long-term health condition, it’s so easy to feel isolated and misunderstood. But there are people out there who get it. And that support can mean the world.
So, with that in mind, I’d love to get to know you. Writing a newsletter, after all, can feel like a bit of a one-way street. I’ve learned so much over the years through conversations with people in comment sections, and met some of my closest friends in online communities.
Please comment on this thread to share who you are, your experience with chronic illness (if you’re comfortable sharing it!), and any interesting, creative things about you. I’d love to read your work, look at your art, and learn about your online shops! So please do share links to those too.
I also know there are a lot of people subscribed who have loved ones with chronic illness or work in the supportive/medical field. I’d love to hear your stories too!
And since we’re trying to build community, I’d also love to hear what you wish you’d known about living with chronic illness when you were first diagnosed, and what advice you’d offer to others.
I’ll go first: I’m Natasha Lipman, and I’m the writer behind this newsletter and voice of The Rest Room podcast.
I won’t go into my full story here since I write about it a lot on the newsletter, but: I was diagnosed with Ehlers-Danlos Syndrome in 2009, after spending my entire life not understanding why I had such a “weird body”. I hoped that a diagnosis would open up doors to treatment, but sadly over the years my health declined substantially and in my mid twenties developed PoTS and a histamine intolerance, among other issues. I spent a good chunk of my formative years alone in my bedroom, but over the last few years have had access to care and support which has slowly enabled me to build a life that I never thought would be possible. I’ve just been diagnosed with Hashimoto’s thyroiditis and am in the process of figuring all of that stuff out!
I joined Substack in February 2022 after leaving my job at the BBC because I was really struggling in the aftermath of a flare-up. When I’m not working on my own projects, I’m the Content Lead for Visible, who are building an activity tracking platform for illness, not wellness. I’m also learning Yiddish which has pretty much been the best thing I’ve done as an adult. Oh, and I’m desperately trying to learn how to pace so I stop massively overdoing it. It’s going…ok 😂
Over to you! Please introduce yourself and share your story ⬇️
Hi, I’m Claire! What a fantastic idea to create a community space. Glad it includes the word ramble as I tend to write long rambling posts.
I’m a scientist by training with a BSc in Biochemistry and a PhD in drug discovery biophysics. I’m now a product manager role for a global life sciences company, a role that enables me to work from home. Luckily I have a VERY understanding manager, I’m off sick in bed as I write this.
So here’s my story. I was diagnosed with Joint Hypermobility Syndrome in 2012 towards the end of my first degree. I was struggling to walk due to ankle pain and my cousin had recently been diagnosed. When I heard about the condition and her symptoms, all the daily aches and pains, clumsiness, bruising, fatigue etc.. made sense. At my first assessment I was told I couldn’t possibly by hypermobile because I couldn’t touch my toes! But that was “good” because there are “no treatments for it” and I would be “better to have something like Lupus” 😱 It was a podiatrist who said my ankles were crazy hypermobile and referred me for my diagnosis. I managed to complete two degrees on pure adrenaline and lots of boom and bust cycles.
Fast forward a few years, with various physio referrals, pain meds, a couple of city moves and lots of “self management” found via Instagram. Also an amazing pilates teacher who understood hypermobility and built me back ‘piece by piece’ in a gentle way over years. I was coping “ok” and considered my fatigue and joint pain mild compared to others.
In 2019 I was diagnosed with quite advanced acute myeloid leukaemia after being ignored and having my symptoms dismissed for two months. The symptoms include fatigue, joint pain, easy bruising, sound similar to any other chronic condition? After a year of very aggressive chemo, mainly in hospital in isolation, to knock out my immune system I was finally in remission. Then enter covid. 18 months of shielding until it was deemed ‘safe’ for me to re-enter society.
Of course I did what any good cancer patient does and followed the advice to exercise to improve my fatigue, following a graded exercise programme, going out and socializing, throwing myself into work, setting myself walking challenges to raise money for leukaemia charities. I focussed on Pilates to get the muscle strength and stability back that I’d fought so hard to improve in the heads before. Trying to get back to normal old me. I nearly died, so of course I wanted to live my life.
Initially my fitness and post-cancer fatigue improved but then got a nasty viral infection and crashed. The more exercise I did the worse I got. Fatigue levels almost as bad as when I was on super strong chemo. My cancer doctors told me this was not cancer related as I was so far out of chemo and kept ‘prescribing’ exercise and pushing through. Enter an ME/CFS diagnosis at the end of 2021. In recent months I may also be looking at a ‘long covid’ diagnosis on top of that.
So after this long ramble, I’m currently undergoing an energy management course with Bath Centre for Fatigue Services (thank you virtual appointments). Learning how to pace, and being bad at truly resting, while listening to your amazing podcasts Natasha that put it all into perspective and give me hope that I will manage this. My current aim is to find some kind of baseline activity over the next 6 months and also allow myself to rest, recover and recharge.
Trying to explain to people why I’m not ‘better yet’, and navigate some emotions around the support I had from friend and family when I had a tangible (hopefully curable) illness vs. an ongoing saga of never feeling well and the relationships being lost along the way. Looking to meet people who understand these feelings.
The creative part: I started an online handmade jewellery business (NatureInTreasures) but Etsy shut down my page because I wasn’t able to manage it during the Leukaemia year and now I think I’m blacklisted. Perhaps I should find some time and energy to reopen it! It was quite therapeutic at the time.
Looking forward to getting to know everyone in this community and hearing their stories. If you made it this far, thank you!
Hi Claire, thank you so much for sharing your story! I too, love a good ramble so I'm glad someone else enjoys the name.
First of all, what is drug discovery biophysics? That sounds fascinating! I know this probably isn't what you do, but I'm really interested in learning more about medication interactions with the brain - having gone psychotic on a few meds, I want to understand why!
You know, one of the things I found most frustrating about the name change to hEDS was that misunderstanding that in order to be significantly impacted by hypermobility you need to be super bendy. I wonder if there are different 'strains' of it - in the sense that some of us are rock solid as our muscles have massively overcompensated to make up for the hypermobility in an attempt to protect our joints. And the fact that that often isn't represented or recognised is really frustrating.
Thank you so much for sharing your story, and I'm sorry you've had that "pushing through" experience that made things worse. I could also relate to getting through degrees on adrenaline - even now I still rely on it and breaking that habit is SO hard.
How are you finding the care with the fatigue services? I'm so glad you've been finding the Rest Room helpful among the other things you're doing - and I really hope you're able to learn how to rest. It's something I still struggle with a lot - my mum literally yelled at me about it on Friday :D
I just looked at your shop and can see from the reviews - the earrings are lovely!!!!
Thank you again for your comment, it's so lovely to have you here.
Haha drug discovery biophysics is the short way of summarizing a very specialised PhD that bores most people to death, but since you ask! I was developing what’s called a platform technology to help discover more effective drugs with fewer side effects. I was using a machine called Biacore to measure molecular interactions between drugs and their intended drug target. You can also check whether they interact with other targets that would lead to side effects and ‘deselect’ those in the process. So a bit like this platform is for all spoonies with different medical conditions, the same platform could be applied to any disease really. The day they find the molecules responsible for EDS or ME/CFS I’ll be right on it! But for now academic research is too inaccessible to me. Now I work for the company who supply this technology.
But getting back to your question about the brain… I am not an neuroscientist so I really have no idea. But most likely the drugs are binding to some other receptors in the brain to cause these side effects. In theory the drug could be designed to avoid that, but identifying the mechanism can be really tricky and requires a lot of people smarter than me 😂
And yes totally agree with the new classification. I don’t actually know what to call my condition anymore because I haven’t seen a rheumatologist since the classifications all changed. I’m 8/9 on the Beighton score but my back was rock solid for overcompensating and still tends to scare most physios how tense it is!
I have to say that the fatigue services care has been impressive so far. It’s refreshing to speak to medical professionals who get it and believe me about my symptoms. Going through it at the same time as listening to your podcasts has helped me see how it can work in ‘real life’ and set some expectations. As a scientist I have a lot of perfectionist tendencies and like data, so I’d be likely to try to design the most perfect unrealistic energy management plan to try to stick to. I’m still too early in the process to say if it’s helped and I got covid immediately after completing the course too 🤦🏻♀️ But the process of having an occupational therapist guide me through some of this stuff has helped reframe the way I feel about it all.
K'm so glad to hear that the care you've got from the fatigue service has been good - and I love that you can use the podcast in combination! That's so awesome. And yes, I totally get the perfectionistic tendencies and data thing :D
and just on the Beighton score, I have a supppper interesting podcast ep coming out very soon about EDS that I think you'll really enjoy.
That's exciting! My knees bend backward regularly and I have some other hypermobility, but was told I "couldn't" have EDS because I can't touch my toes and I can't touch my thumb to my forearm. I had no idea there was a scale, and other symptoms that could be used to determine diagnosis, nor that the body would try to protect itself by stiffening (my back, and especially my neck and shoulders, have always been rock hard to the point of painful, despite regular massage...hrmmmm....) I look forward to hearing this upcoming episode!
I’m another one who missed out on an EDS diagnosis because I can’t touch my toes, even though I have the characteristic skin scarring and almost every single joint in my body is hypermobile (thankfully my knees are the most stable of the lot which is a real saving grace).
The most perfect unrealistic energy plan also really rings a bell with me, I saw the fatigue service in edinburgh who called me out on designing perfect plans rather than actually liveable ones (funnily enough my undergrad is in neuroscience but I was unsure if I should do a phd so took a year off to see if I missed it, then never went back)
Haha, neuropathic pain pathways and the neurotransmitters used for signalling in them were my focus and what I’d planned to do a phd in. We could have had a beautiful partnership 😂
Hi Claire, from another Claire, I also have a diagnose of ME/CFS and can relate to much of what you said. I have heard good things about the Bath Fatigue service, mainly after coming across the work of Ian, who created a cook book for those with brain fog as a result of brain. Not sure if cooking if your bag, but worth having a look at https://www.bbc.co.uk/news/disability-56536589
what a spooky coincidence ...I found his work really important as someone who put mustard in a crumble once when cooking .... But I find cooking so therapeutic and love bringing people to the table
Yes! I've been building up doing things around the house and I now am the part-time sous chef and it feels really lovely being able to contribute to a meal by pacing the prep throughout the day to help my partner make the meal in the evening!
Oh definitely this looks great! I love to cook but recently my spoons have been going to other things and I basically live off mindful chef ready meals and deliveroo 😂 Maybe this can be the inspiration I need to start again!
Aww yes! There are lots of lovely tiny steps to the kitchen too. Lydia Wilkins has written a book coming out later this year about cooking with tips for autistic people but there's a lot of overlap for people who generally struggle in the kitchen with fatigue and brain fog. And Ian Tavener at Cookfulness does a lot for people who struggle in the kitchen too!
Thanks for sharing this! Cooking and baking were the last things I've been forced to give up due to my illnesses (I stubbornly attempt to cook once/week, regardless of how I'm feeling, because I love it so). I've been relying on pressure cooker and air fryer recipes to reduce the amount of time I have to be upright and cognizant, and I had no idea there was a cookbook out there for people like myself. I'm buying this one ASAP.
I'm Claire and I have a diagnosis of ME/ CFS. it was only since Long Covid came to light did I feel compelled to share my experience publicly. I do that now on my own sub stack page, I joined in July, as a way to find other people who would be interested in sharing how to navigate the softer aspects of life of chronic illness, not prescriptions and pacing, but rather relationships, romantic, friendship, familial, sense of self, work, isolation, mental health. All that secondary suffering that remains unsaid. Previously I worked as Creative and Researcher in London in creative agencies, but since resigning from my job in 2016 due to health reasons, I have floated about trying to work out how to make work, work for me. Creativity has been hugely important to me, drawing, learning to sew my own clothes, reupholstery and now writing. I see a big link between creating and making sense of the world. Glad to be here and perhaps we can collaborate in the future.
Thanks so much for being here! I've been reading some of your articles this morning and enjoying your Substack. I'm so glad you felt able to share. What was it about Long Covid that made you feel compelled to share about your experiences?
And yes, I totally agree, that "secondary suffering" side of things is such a challenge. When I talk about things I wish docs would have talked to me about it was about all of that stuff - the stuff that makes a life. I totally feel the same way about creating and making sense of the world - writing is how I do that.
Feel free to email me if you have any ideas for collaborations :)
Yes I love this, I spent so much time believing that the "softer" parts of life didn't matter, or that I didn't deserve them and I had to just toughen up and go without.
Claire, your substack has the BEST name! Looking forward to reading more of it. Creativity has made a huge difference for me too. A bit morbid, but I learned to sew so that I could make a shroud for my dog, Bella, when she died of cancer. It was one of my most meaningful experiences since my life was broken by CFS/POTS.
I subscribed to your substack, Claire, and looking forward to reading more! If you'd ever like to chat for my podcast, it sounds like you would be a great guest!
I'm Ed. I have had Long Covid for a few years and this is how I discovered Natasha's work.
Prior to getting Long Covid I worked as an Assistant Principal in an Academy in Ladbroke Grove W. London. However Long Covid has meant I have had to undertake a career change and I am currently working on the content/community aspect of a platform to support people living with energy-limiting conditions called Visible which is very exciting.
As soon as I listened to a few of Natasha's podcasts and read some of her articles I knew that she was someone we would like to get involved with content at Visible. It has been great to get to know her and see her take the lead on content.
My Long Covid means that some of my older hobbies have had to take a backseat but I am still music obsessed and when energy permits love digging for records.
Thanks for commenting - it's been such a pleasure getting to be part of Visible. I'm really excited about what's to come.
Something I've thought about a lot is the experience of kids with chronic illness (not sure if you heard my latest podcast ep) and what things could be implemented at an institutional level to help them. Since getting Long Covid, have you thought about this at all? Would be super interesting to think about.
And ooh - love the record digging! Got anything good recently?
Hi, I'm Emily and I've had long covid for two years. I wish I'd known in the beginning how to pace properly, that using mobility aids and adaptive equipment would make me feel more able to do things, not less, and that it's possible to live a good life with a lot of joy even with a malfunctioning body and a ton of really annoying limitations.
The Rest Room has been a big help in figuring out to live well with long covid. It also prompted me to finally try learning Spanish even though I have brain fog. I'm not aiming for fluency, just to have fun with it and learn something new. I'm really enjoying it and though there's some days where it makes no sense at all (usually the ones where I could say the same about English) I'm amazed at how much I've learnt in the last few months.
I'm mainly using Duolingo, which is surprisingly brain fog-friendly. I also follow a few Spanish accounts on twitter and try deciphering them when I have the brain for it. I'd like to use Spanish books and TV to learn eventually too. Duolingo's already taught me the most useful sentence it ever will, estoy muy cansada y quiero dormir ahora - I'm very tired and I want to sleep now!
Hi, I’m Kelly and I’m so happy you’re doing this! I’m in Scotland and have always had bouts of pain and fatigue as well as various autoimmune issues but would push through them and not understand why I couldn’t keep up with others, till 3 or 4 years ago when it all came to a head and I was diagnosed with hypermobility and ME/CFS. I went down to 4 hours a day of work from home and was doing ok then caught something that was likely covid in late 2020 and apart from a couple of failed attempts to go back have been signed off work pretty much ever since. I’m a corporate librarian for a huge global company and they’ve been very flexible with me, but it’s hard to get my head round not even being able to do an hour or so from home because my brain fog is so intense. I used to volunteer for a helpline, was a charity trustee, sewed my own clothes, worked long hours, went to the gym… I don’t sew anymore, I tend to dip into knitting over the winter but put it away in summer. I do have lots of indoor plants that I love looking after and propagating, and 2 cats that really help me day to day (including a young one that is mostly responsible for the plant propagation, every time she breaks something off a plant I stick it in fresh soil 😂). I’ve been thinking about getting into embroidery but the same cat can’t really be trusted with thread lying around. And I’m just starting to be able to read books again which I really, really love and missed being able to do.
Thank you so much for being here and sharing your story!
Gosh, this pushing through only to get diagnosed with hypermobility seems super common in this comment section today! I'm really glad your company has been so supportive, but brain fog is le worst :( I'm so rry you're having to go through this.
I'm so glad you've been able to get back into reading books - did you see an old episode that I did all about how to read more with chronic illness? http://natashalipman.com/how-to-read-more-when-you-live-with-chronic-illness/ - that's the blog post version from before i moved to Substack and there's also a podcast to listen to if that's easier. Lots of tips and ideas that might make it easier.
I hope your cats are looking after you, even if they're being cheeky! ;)
Yes! I did see that and listened to the podcast, it was one of the first things that made me really feel I was going to learn a lot from you! Obviously I then completely ignored all your excellent advice, continued to comfort listen to audiobooks where I knew the story and it didn’t mind if I drifted away, then a month or so ago read an entire book in a day and had bad PEM (every time I took a pacing break I just had to go back to it because I was enjoying both the book and the sense of being lost in a book again so much...I’ve been more sensible since)
My name is Ren and I'm outside Philadelphia, in the United States. My chronic illness journey was only explained recently (in 2018) after a particularly bad concussion. I had to do Occupational, Physical, and Speech Therapy to recover from it, but the actual injury led to a final diagnosis of PoTS and hEDS, which explain my entire childhood in all its injuries and pain. I originally trained as a classical musician playing viola, and had to drop out of a music conservatory due to repeated dislocations and fainting. I also live with anxiety, and was just diagnosed with ADHD which is a little bewildering but also makes SO MUCH sense.
I haven't been able to hold down a job, even at 28, and this frequently makes me feel like a completely ineffective human (which I know I'm not- you aren't ineffective, either!). I am still trying to finish my bachelor's degree in Art History, though I've fallen out of love with academia because the fight for a place is sometimes too much work for the limited energy I have. (Writing this out is making me realize that I may have adjusted my dreams based on the world that is not designed specifically with me in mind, and now I'm having a mini existential moment, so that's something.) Even though I'm unemployed, I'm incredibly privileged to live at home with my parents and slightly demonic cat, Ru. I would love to be able to support myself, and hold a job, and have a home of my own, and, and, and... so my goal is to eventually work for an LGBTQ+ youth mental health support website based in LA, since it is remote and has brilliant healthcare (yay USA...). Point being, I have many goals, and not much energy. I think that's the thing I wish I knew about chronic illness growing up: it's okay to feel fatigue All The Time and take things at your own pace. The "pace" is not calculated for anyone with Disabilities or chronic health issues, so of COURSE it would not fit everyone!
Anyway, I spend my days consuming audiobooks and knitting when the energy allows. I am currently working on a sweater I started in 2020 and abandoned with just a sleeve left. I have an instagram which I use to show off my fiber projects (I also dye wool and briefly had a very mini business surrounding that) and use it just to process the whole being-human-right-now thing. If anyone feels like connecting over there, here's my link :) https://www.instagram.com/chronicallyknitting/
Thank you to Natasha for creating such a supportive community where I can see I am not alone. Sending love and spoons to you all!
So lovely to have you here and thank you so much for sharing your story with us!
First of all, can I just say that your knitting is beautiful - what a lovely project to slowly work on. What kind of audiobooks do you enjoy listening to while you knit?
I cannot tell you the number of people I know who have fallen out of love with academia - chronically ill, yes, but also totally healthy people who were completely burnt out by it (so navigating it while sick is a whole other bloody layer!) I really hope you're able to work for that amazing sounding website! I think your message about taking things at your own pace is so important. Over the years I've started and stopped so many things. I learned not to view that as a failure, I learned and grew every time. Finding ways to meet your goals, readjust your goals, or have goals at all with chronic health conditions can be a real challenge. All we can do is our best on any given day.
I'm Sophie, I live in Geneva (Switzerland) and Porto (Portugal). I am an Environmental Scientist by training and spent 5 years working in the aviation industry helping airlines tackle different environmental problems.
I was diagnosed with Hypermobility Ehlers Danlos Syndrome in 2019 and suffered greatly with chronic pain in my lower legs. I had a hip surgery this year which has provided a lot of relief and after being made redundant due to my long sick leave, I've decided to set up my own business. I've loved listening to the podcasts, particularly those around pacing as this is an area I am terrible at (aren't we all?!)!
I am upcycling bottles (gin, champagne, wine etc.) into soap dispensers, candles and more. I'm in the process of setting it up so website, shop etc. to come soon. I will eventually expand to include bespoke furniture using wine barrels and more.
Hi Sophie, lovely to meet you! And thank you for your kind words about the podcast - I'm so glad I'm not the only one that's so terrible at pacing!
I'm really glad to hear your hip surgery has given you a lot of relief from your pain! Leg stuff is awful - my knees have been one of my biggest issues since I was a child. How are you finding setting up your own business and balancing the pacing with all of that? When you work for yourself (and I guess when you work for someone else (😅) it can be so easy to overdo it!
Thanks so much for being here! Can you share a link on this thread when your website is live - I'd love to be able to see what you're making!
I would like to say I'm managing the pacing from the business perspective fine, but that is because I have a 5-month old Retriever puppy and a 5-bedroom house to renovate which distract me quite a lot from the business haha. So really, I am not doing a very good job at pacing at all, I probably need to re-listen to the podcasts! I do try and use the puppy for pacing i.e. when she is sleeping she reminds me to do non-physical activities etc.
I will definitely share a link when the website is live, thanks for asking!
I'm sorry to hear about your knees, I'm guessing you've had a lifetime's worth of physio like I have?
I love the idea of puppy pacing! Also my Osteopath literally told me to listen to my own podcast today to remind myself about pacing, so I'm right there with you :D
Yeah, my knee first came out when I was very very young and I spent a huge amount of time in physio growing up. Finally got a PT (not a physio) who is an injury prevention specialist and she changed everything for me. Still terrified of my knees though - wrote a whole essay about trying to learn to feel safe with them - doing much better!
Oops haha. Maybe I'll try listening to the podcast in my sleep to really drill the pacing in!
I know how you feel about being scared, I'm always worried I'm going to have an accident when things start to improve. I'm also unintentionally doing puppy PT sessions where she pushes me to make my isometric exercises more challenging - they're a lot less predictable than my physio's nudges. Your PT sounds great and far more conventional!
Hello! I’m Lucy, a designer and Natasha’s ancient friend! I have mild hypermobility with a penchant for overdoing it, so I have greatly benefitted from Natasha yelling at me to pace over the years haha <3
Since Natasha is such a good writer her internetting has been vital to me to know in great detail how I can support her as a friend in her life.
I also have to say how much she helped me when I was recovering from Covid. The long Covid overlap with chronic illness appears to be uncanny and I’m hoping the chronic illness community will be better valued in future!!
Hello Ancient Friend! Lol I just remembered when you went to the GP and he was like, "you have mild hypermobility. I have a patient who has a more..." "Yes, I know, it's Natasha" :D
I'm so glad that you've been able to learn from my thingies and benefitted many a-time from my wagging finger.
Also, thanks for being the best of pals a tired tashy could ever want <3
Hi, I'm Amelia! I'm from New Zealand. So wonderful that space has been created for everyone to share, it's so interesting how much parallel there is within everyone's experiences. I have been following Natasha on instagram for years, I actually can't remember when I started. It feels like her content has been apart of my life for so long. It was there for me when I really needed another perspective to cut through. Thank you so much Natasha, I've felt so seen as a fellow perfectionistic writer! This post is also going to be quite long!
I was diagnosed with hEDS in 2019, looking back over my childhood and the many injuries, appointments and pain it makes sense. But it was never connected then, and I was the perfect patient. I would do all the exercises, recover from my injuries and bound back into life, compensating for what I felt I had missed out on. When I was 14 I got glandular fever, which triggered me to become very ill. I had severe pain in every bone in my body, horrible fatigue and many other symptoms. No doctors knew what was wrong with me. Eventually I was given a vague diagnoses of post-viral fatigue/post-viral pain syndrome and POTS. The sense from medical professionals was that I was young and would overtime get better. I took on all of the self management while I was still basically a child and put so much of my energy into pushing through and getting better. I grew up very quickly, strangely at this time I also started my own business teaching drama to children and working as a nanny. I worked for most of my teen years, constantly pushing myself beyond my limits. I was also training as an actor and auditioning professionally. Looking back, I should have just allowed myself to rest and be young. I didn't yet have a language of disability and acceptance. I felt I needed to be 'fixed' and often denied the reality of my symptoms. Both my siblings struggled with their physical and mental health, EDS was floated as a possibility because my brother was diagnosed. But I was in denial, I didn't believe I was 'bad enough' to have EDS. In 2018 I began a degree in screenwriting and directing. This was an intense practical program, and I studied full time. The film industry is inherently ablest due to its industrialised nature, and at times my program was a challenging environment. My symptoms began impacting my mobility more, and I began to see things differently. At uni, I discovered disability theory and ended up writing many essays about disability representation in film, media and narrative. It wasn't until the end of my second year that I was diagnosed with EDS and I probably didn't have space to fully process it at the time. But my understanding of the rights model of disability did help me to began to accept disability has part of my identity and how I see the world.
My classes took place in the buildings of an old psychiatric Hospital, this really struck me and sparked an interest in research the hidden histories of disability and the impacts of institutionalisation. My graduate short film Hysteria was a narrative exploration of that history and I was able to film on location. You can watch it here https://vimeo.com/484270788 the password is hysteriafilm
By the time I made this film (I made others) I was more aware of my access needs and although I definitely still pushed myself, I am proud that I explored what accessible/sustainable practice could like like within the film industry. I ended up graduating as senior scholar, which meant a lot to me, as a teenager with a lot of brain fog, I'd never written an essay before going to uni.
In New Zealand we've had long strict lockdowns during the pandemic, which actually forced me to slow down and confront things. My whole life I felt too delicate, too soft, too fragile in my physicality, so I hardened, sharpened my interiority to compensate. Not allowing myself the emotionality of my experience. Ten years of emotions hit me all at once, and I began psychotherapy. It has been one of the best things I've ever done. A lot of this was unpacking the complex dynamic of a family shaped by chronic illness. My brother, sister and I all have hEDS. They both lived with OCD/ADHD and complex mental health. I always filled the role of the 'capable and functional one'. Proactive, when they were passive. I think the roles we develop to cope with chronic illness should be discussed more.
I currently work for a small non-profit leading the development of an integrative support service for people with chronic illness. This service will be entirely free and focus on a lot of what has come up in the podcast and these comments. The softer aspects, the secondary suffering and the complexity that comes with living with conditions like this. So others don't need to feel as alone as I did when I was 14. I remember in a podcast episode, Natasha mentioned the dream of place that people with chronic illness could come for rest and relaxation, to be supported in the isolation of self-management. It's incredible that I have the privilege to create something like that.
I still have writing/film projects in development, but like many have said I struggle with the fact that I want to be so many things. I am drafting a feature film version of Hysteria and exploring the possibility of writing a creative non-fiction memoir that can link my experience of my body to disability theory, history and the pandemic. But I am re-exploring my expectations on output and that it could be okay if I spend years on these things. That perhaps I don't have to approach my creative practice in an 'industry' way.
Thanks so much for being here and for your support on Instagram over the years. It has helped me so much to know I'm not alone with my perfectionistic vibes too :D
Thank you so much for sharing your story, and for sharing your film - I'm looking forward to watching it today! And also can I just say: " I always filled the role of the 'capable and functional one'. Proactive, when they were passive. I think the roles we develop to cope with chronic illness should be discussed more." - bloody hell this is me too - I've been thinking a lot about these roles, what does it come down to? Personality? When people have access to the same level of care and support - what is the thing that makes the difference when it comes to proactivity?
The non-profit sounds absolutely brilliant - can you please share some more information about it please? I'd love to follow along.
It's so difficult when thinking about trying to work in creative industries and how we conceptualise "output" - it's something I struggle with a lot too. Writing for me is something I love to do, but it's also my job. So at what point do I inevitably start pushing myself?
Hi Natasha, thanks for your response! Yes, the roles of coping//adapting are so interesting to me. I think it must be partially personality, but definitely family or group dynamics also come into to it. Something my therapist said to me was that being proactive and constantly busy, even if it's being busy with 'health management' can also be a form of avoidance. It seems that people to tend to fall into either extreme though, so I am interested in why that is and what actually shapes it. Why some people keep pushing, while others get so paralysed . Could be an interesting podcast topic?
We are in the process of updating a new website, but once it's launched i'll let you know! The space you are creating for the rest room is so helpful for shaping what this service could like and what the needs of our community are. It's also an opportunity for me to build a job that suits me and my needs.
It's definitely such a challenge, especially because of what is normalised in creative industries. It's so hard to go against that. I am at a point of questioning if there is a space for me within film, which is why I'm exploring other forms of writing. But I already have a full time job, so I have to be careful not to put able-bodied expectations on myself.
I'm Beth and I've had ME/CFS for the past 20 years, dysautonomia for probably longer than that, and endometriosis for the past 30 years. Of course, diagnosis for those didn't happen until 5-8 years ago. My ME/CFS was cyclical and manageable, though frustrating, for a very long time, but in early 2021 I had a bad bout of COVID-19 and since then my ME/CFS symptoms have been constant (and the cognitive dysfunction bits have been worsening to the point of fully disabling me). I discovered this podcast a few months ago, thanks to a friend with ME/CFS, and it's been a godsend. In particular, I wish someone had told me how to effectively pace things years ago. I've been very boom and bust, and didn't realize I could alternate between primarily physical, primarily cognitive, and primarily rest activities and actually enjoy relatively stable (low) stamina. Had I known that before, maybe I would've lasted longer before being burned down to the ground by this illness and corporate America. :D
I don't really feel I can claim any of the productive, creative things I used to be anymore (I used to be a novelist, a seamstress, a cosplayer, an historical reenactment gal, a hobby chef/baker, an avid reader, a dabbler in hobbies, a tech writer/editor, and a small business owner with a penchant for volunteerism and environmental activism). I suppose my one interesting thing now is that I'm raising and training a medical alert service dog (for chronic migraine and dysautonomia attacks). And I try to alleviate isolation by participating in play-by-mail LARPs and Discord communities.
Thanks so much for being here and for sharing your experience - and I'm so sorry you've been struggling. The effective pacing by activity alternating was HUGE for me - I wish I knew this too! How does play-by-mail LARPing work!?
Thanks! Basically you make a character and then exchange letters in character, with other players. Like a game version of being pen pals, though usually there are game-wide plots to give you letter topics to write about. Through a Regency one, I got into fountain pens (which require *much* less pressure to write with, so I'm able to hand-write things with less pain) and it's a nice, slow activity that helps foster a sense of inclusion. Honestly, finding slow, go-at-your-own-pace, inexpensive/free hobbies has been difficult, but necessary for me to retain any sanity. :D
Hi Beth, I wanted to say that I was also curious about play-by-mail LARPs and thank you for your explanation- that sounds wonderful ! I'm a big fan of writing letters but can worry about what to say, so that sounds fabulous :)) I agree with fountain pens too- they're much easier on my hand joints and I get a bit of joy from writing with one and feeling very fancy
I hope you get a chance to join one someday! I'm currently in one called Mosswood, which is set in a sort of Wind in the Willows fantastical setting, very whimsical and sweet and low-stress (everyone playing anthropomorphic animals), so I can recommend that. :D And yay for more fountain pen fans! Yes- they do make you feel fancy, don't they? I also feel artistic, even though I'm not, when I write with a really pretty fountain pen ink.
Hi, I'm Lucas ! I'm really appreciative of this space as well as everyone sharing some of their stories and how they've ended up here. I've found The Rest Room very useful both to learn from and to feel validated by- as a chronically ill medical student who was always know for being busy, it seems my brain's natural resting place is that I am making up all ailments, or could be fine if I just tried harder :(
I have chronic fatigue diagnosed as long covid which means I can feel thankful for the increased visibility of long-covid like conditions (which led to me receiving any support at all!) but can also feel my experience is minimised by those focussing solely on long-covid. (Not that long-COVID doesn't deserve attention and support!)
I'm also hypermobile (HSD if that's a thing still?) and have POTS like symptoms but no diagnosis. I wrestle with pacing a lot and definitely get caught in boom and bust cycles, but have made some improvements in the last year or so.
When I'm managing okay I also like to knit, crochet, play music and write poetry - I definitely agree with those mentioning the power of creative outputs!
Thanks so much for your kind words and for being here!
I think HSD is still a thing (for now anyway!) and that combination is super common in the comment section here today! I wrestle with pacing a lot too and still struggle with those boom and bust cycles, so you're definitely not alone. How do you find medical school with your health? Are they supportive?
Yes, I've seen lots of people with the cfs and hypermobility combo about :) I sometimes wonder if there may be a link via neurodiversity but never quite have the spoons to adequately wade through the papers!
In the last year I've been on a different (related) degree which was much more similar to a 'standard' uni arts degree with fewer contact hours and much more flexibility (but still intense and difficult!) and adjusting back to long days in hospital is quite hard, especially with attendance requirements and very variable schedules which complicate pacing.
I think the main thing for me is the harmful attitudes I encounter in medical settings and can internalise. I am still very hesitant to be visibly disabled or ill around medical students/doctors that are teaching me, and can find that people feel more entitled to medical/personal information than usual. Medical school can be okay, but I have found it quite hard to have fluctuating conditions understood, or to explain that whilst I might be able to do something it may have knock on consequences in the rest of my time or health, like managing to meet some uni requirements but then having to spend the rest of my time in bed and without energy to cook or eat etc.
Overall it's a mixed bag but I'm gradually finding pockets of understanding and shared experience, and hope to continue this. If I have the spoons. One day!
Can totally relate to the whole 'making it up' thing. Sometimes it is so tempting just to push through and think we can do things if we try hard enough. When i've done a more effortful activity, i often question why i've avoided it for so long... then the PEM hits to remind me why!
Yes! I think I can have quite a variable severity of fatigue too, which compounds the feeling of doubt about 'fakery'. And I definitely feel you on questioning the avoidance of activities - I recently had covid and whilst I was quite ill I dreamt and dreamt of running, completely removed from my reality where that was a) never a good idea and b) completely impossible for me at that point. I know I like to plan things, so i think it can be a bit of a coping mechanism to plan and think about all the activities I'd like to do, or how hard I'd like to work at a physical thing - I often need a reminder that my baseline and what's hard work for me is different to many other people
I totally identify with the imposter syndrome! My thoughts range from “you’re a total malingerer” to “if you just did more research you’d find a cure for this disabling illness.” It’s tough!
I miss running! So tempting to try to exercise our way out (terrible idea). I've tried to think of rest as training, even though it is so counter intuitive to what we've learnt our whole lives. Have you ever tried an e-bike at all?
Ooh I haven't thought about rest like that - I try to stay away from ideas of rest being productive (because it lets you work more) because of how it can reinforce an idea that rest is only valid if it leads to more work, but I think rest as personalised training feels quite different to that and is definitely something for me to mull over - thank you!
And I haven't ever tried one! There are cycle hire schemes around the city and some of them are electric - I want to try them out and there's a discount on at the moment too. How about you?
The local environmental group where I live lends out ebikes to encourage people to switch from driving to cycling, so managed to borrow one for a couple of months. It's a bit different from cycling a normal bike but just being able to get out and about in nature and feel the wind in my hair made a huge difference - although had to be careful not to push too hard or go too far. We've also got a hire scheme and it's a great way to do activities with friends as everyone is on the same level. Would highly recommend!
Hi! I am Hollis. I live in Anchorage, Alaska and I am 34. I was diagnosed with dysautonomia in 2015. Until that point, I had lived with pain, digestive issues, circulatory issues, and a variety of other 'weird' things that as a high achieving person who loved learning and making art I had powered through. I moved to Alaska in 2016 to be outside-- my body always felt best (and still does) when moving and I never stopped going because of the crashes I would hit. But, that meant persistent pain, and autonomic symptoms. I continued to power through until a series of viral and bacterial infections in 2020 and 2021 set me into a terrible spiral. This led to some new diagnoses: hEDS, chronic fatigue, complex regional pain syndrome, cervical distonia, amongst other things, and suspected MCAS. I deal with persistent pain, disgestive issues, orthostatic intolerance, joint slips, fatigue, brain fog... y'all know-- all the things. I have pushed through many of these things at lower levels for years, but recent escalation means a whole new way of being. The new baseline is much, much lower than earlier in my life. I am no longer able to 'power through' and upright activities (and thus my job managing a staff of 10 and 1 million dollars as the head of Education at the Anchorage Museum ) are no longer accessible to me. I am, after 7 years of diagnosed chronic illness, still learning to live with it (generously) and not inspite of it (fighting it). Day to day I am sometimes full of grief, sometimes full of hope, sometimes full of rage, sometimes exquisitely happy finding pleasure in less. I am still working but on reduced hours as I try to chart my path. While not able to wrap their heads around my shift from someone in cute heels managing 13 hour days to someone who cannot stand, my job has been as accommodating as possible, though perhaps has a long way to go in understanding access. My partner is a doctor, which can be helpful, but as he said to me-- he never learned about dysautonomia in med school, and we're learning, and have been, together. He's incredibly supportive, but as a doctor always wants to fix it-- when sometimes I just need someone to listen (as chronic illness is no miracle pill fix, no matter how many I try I have found!)
I make textiles, write poems, make music cook food. You can see my art here: http://www.hollismickey.com/ and listen here: https://shollismickey.bandcamp.com/ I really have been wrestling with malabsorption, early satiety, slow motility, and nausea which has caused me to dramatically loose weight and challenged dramatically my relationship to food, but I do write about food: https://ediblealaska.ediblecommunities.com/s-hollis-mickey I am hoping to launch a patreon this fall of food zines. I have an instagram where I hide behind ingredients and sometimes talk about making invisible disability more visible: https://www.instagram.com/apronon/ I really have been challenged to find support networks, so this podcast has been a place of solace, and I am eager to connect with others who listen.
Alaska, wow! Thank you so much for your kind words and thank you for being here. I recognise you from Instagram! Hi :)
Thank you so much for sharing your experiences - I'm so glad you've got someone to support you but it's not a surprise he didn't learn about dysautonomia in med school1 I'm looking forward to digging into the links you shared!
Honestly, as someone with 20 years of chronic illness under my belt, the process of grief and acceptance feels like a journey with no end. I'm so sorry to hear about your digestive issues, and thanks for sharing your writings about your changing relationship to food! I'm digging into that content today.
Thank you, Beth! I am 5'3" and have dropped to barely holding 80lbs, which as someone who loves to eat and make food, is hard. Especially as all food exacerbates my autonomic symptoms. And, being too thin leads to lots of assumptions about my mental health when their are physiological reasons for what's happening-- so much assumption about eating disorder and body image issues when I just desperately want to eat and feel strong in my body. Finding others who have been on the journey a long time means so much. Feel free to DM!
That sounds terrifying! And so very frustrating. People do love to judge, don't they? (I suffer from disordered eating, but because I'm overweight there's an assumption in the other direction). I'm loving your shared articles on foraging and veg-based recipes (that rose hip and cranberry ketchup sounds delightful, and I love the idea of sorrel frosting)! Thanks for sharing your skill and creativity there, even though you're struggling personally with your body's treatment of food.
Beth: I appreciate your kind words and support. It’s exhausting to have to defend your body and your symptoms against assumptions. I am in such deep solidarity with you!! Thank YOU for the work you do on behalf of your own well-being, which brings wellness to others. That’s certainly what I hope we can each do: support others in a sustainable way, while pacing so we can care for ourselves.
Hi, I’m Colin, friend of the podcast and sometime collaborator. I’ve really enjoyed seeing this project develop over the years! I’ve found the deep dives into topics like pacing extraordinarily helpful. Really, no one else is doing what you do and I think the size and engagement of this community is a testament to that. I've been learning Yiddish along with Natasha for about 18 months now! Otherwise, these days I'm mainly working on pop linguistics stuff over on youtube (for anyone interested, it's at https://youtube.com/colingorrie ) Both of these things are marathons rather than sprints, so I’ve been trying to keep your pacing advice in mind as I go!
Thanks Colin! I've learned so much from you when it comes to language learning (and honestly, who knew you could learn a language with brain fog!) and I HIGHLY recommend his language learning and linguistics content for anyone who's interested!
I really identify with bits of everyone’s stories, which is just so comforting.
I’m Bea - my dx are POTS/dysautonomia, post-viral fatigue (ie CFS), migraine, TMJ, sleep disorder, and myalgia. I *just* had Covid and am paying attention to how recovery is going.
I’ve only been super ill for about 18 months, so I’m still figuring out my narrative. I’ve always had (what I now know were) mild POTS symptoms but last year they became extreme, accompanied by fatigue, migraines, pins and needles, etc.
I’m a Brit in the USA, having moved here for my partner in 2011. I was very active physically (running, swimming, looong walks); professionally (full-time writing job at University of Pennsylvania, freelance writer for international art magazines, creative grants recipient); and academically (working on a grad degree in ancient languages and art history part time). I have a wonderful group of close friends in Philadelphia and in the UK, and a dog and a cat. I feel proud of myself to have built such a great life in my chosen country, but I also feel so sad writing this because so much of it has been stripped away by POTS/CFS. I alternate between feeling angry, accepting, and beaten at the moment.
My initial reaction to being ill was to work harder and do more. I wrote a paper on emotional orientation in the epic of Gilgamesh while recovering from my awful tilt table experience, and had a job interview wearing my holter heart monitor disguised under an elegant turtleneck. I got a new job writing speeches for the director of a brilliant museum, and powered through with a lot of (prescribed) stimulant meds. I just worked and slept and went to PT/OT, and my poor partner did his best to get me to slow down.
In January of this year, I couldn’t keep up the madness any longer. I was bed bound for a few weeks in a huge crash, and since then, I’ve had awful brain fog on top of everything else. I valiantly tried to keep working even when my partner and doctor warned against it and just got more ill and more behind in my work. On March 18, I finally gave in and went on medical leave. I feel glad that I decided to take care of myself, but also I still have that lingering sense of shame of being unproductive and not valuable because so much of my self-worth is tied to work.
Since then, I’ve come to realize that I won’t be going back to work full time at the moment. This is so hard to accept. I’ve been able to vomit out this post, but generally my ability to write is limited. My brain fog can get so bad that I can’t follow a recipe, I can’t remember why I opened a page, I can’t remember how to plug a phone charger into my phone, and once I got terrified as I momentarily forgot how to get home while walking my dog a couple of blocks. My cognitive difficulties were so bad once at a Dr apt that she immediately scheduled me for an MRI to look for tumor or dementia. …but it’s just the POTS and the fatigue.
On the positive side, being off work has allowed me to explore making art when I have the energy (will find a way to share photos). I’ve learned to listen to my body. I’ve learned what an amazing group of friends I have, and how kind my partner is. I’m excited as I finally found an OT who understands POTS (why did I get assigned a hand specialist at first who had to Google POTS?!?) — and I just got into a POTS study at Vanderbilt Autonomics Research Center.
I’m so so grateful for Natasha’s work — I’ve learned more from your expert interviews and life experience than I have from any doctor or OT so far. You have helped me start to “self manage” (oh that phrase).
Given my energy limitations, my plan to fix my old freelance website is on the back burner. However, you can see some of my art writing on it (just beware not all the links work): https://beahh.net/writing
Thanks so much for being here, for your support, and for sharing your story! Sending all the best of luck for your Covid recovery. Oh, and thank you so much for the incredibly kind words about my work!
You know the biggest thing that has been pulled out of most of these comments on the thread today has been people talking about how much they pushed themselves until they couldn't anymore. It's so sad. And those feelings you talk about, anger, acceptance and beaten is something I can relate to a lot. Even though I've been living with this for a long time, I go through phases where just sometimes it still gets on top of me.
I'm looking forward to reading some of your art writing!
Hi Bea, what you said about sense of self-worth being tied to work and feeling shame for not being able to has resonated so strongly with me! I felt exactly the same, right down to deciding that working harder instead of slowing down once the illness started to bite was somehow the right way to approach things. I feel like I’m in a bit of limbo now, I don’t feel quite so strongly that I only have value in the world if I can work/volunteer/be of use in some way, but I’ve also not totally broken free from it. As you say, it’s so comforting to know others feel the same way.
Absolutely. I've been thinking about this a lot recently. My doctor told me I need to take time to convalesce and my mum yelled at me for pushing myself too much the other day. And it's one of those things where it's like...difficult...because I understand not pushing myself but also just I love doing stuff, and I know a lot of that is tied up to how long I spent not being able to do things, but at the same time, it's ok to want to do stuff and find it hard when you can't. Not sure if that makes sense, but it's been something I've been thinking about a lot!
Kelly and Natasha, my partner yells at me (in a nice supportive way haha) for doing too much. Kelly, I totally get that feeling of being in limbo-- and, Natasha, I too just love doing stuff. In my teens and 20s, I had severe OCD and was recovering from a sexual assault, both of which limited my ability to participate in life. And so in my 30s (now) I felt like I had so much lost time to make up, and I threw myself wholeheartedly into lots of wonderful activities.
So having a chronic illness brings up that feeling of helplessness and lack of control that I felt so much as a younger person. So then I want to do loads to have a sense of agency, and then crash ... etc etc.
I feel like the sensible answer is that pacing and slowing down will help you do more, and more sustainably, in the longer term. But it’s so hard! I definitely get into something (listening to a book, puppy training, macrame, folding laundry...) and then forget to take breaks. It’s nice that none of us are perfect!
All of this is so relatable - I'm glad it's not just me! Society seems so focused on productive outputs, and it can feel like you have to work to prove you are a valuable member of society. Definitely felt like that when I was signed off work. Even when asked what you did at the weekend, it's not really socially acceptable to say nothing - even if that was what was best for you in terms of health.
There's ALSO the thing where if I'm not distracting myself by doing something, then I'm acutely aware of the pain and discomfort in my body and basically have no escape from that. So sometimes pushing myself/overdoing it feels like the lesser of two evils (maybe that's instant gratification talking, but still).
Hi, Bea! I quit work in December (they were unwilling to make any accommodations) and I also have struggled with the sense of shame, being a grown professional adult with a degree, 20 years' work experience under my belt, and having been really ambitious and effective in my field to now being unable to parse auditory language, struggling with reading comprehension, having little recall ability, etc. It's rough, and I wish I had a magic fix to negate those unhelpful feelings, but I can at least tell you that you're not alone there. And funnily enough, my doc also sent me for a brain MRI when my cognitive function started rapidly declining (sad to say, I was hoping for some physical representation to explain the issues but nope). My doc is starting me on memantin, which is used for Alzheimer's patients, in the hopes that it will knock some of that cognitive dysfunction down. I hope your OT is able to really help you make progress in managing your symptoms to a place you're at peace with.
Thank you for The Rest Room and for this lovely social get together. So great reading people’s stories. I am Jane and I live in Australia. I have been enjoying your informative, well presented and friendly podcasts and have been surprised how many times your topics have timed in well with my own queries and wonderings. I also like how you express the difficulties that come with pacing, managing new hope and the complexity of real-life stuff. For me, you have created something valuable in that space between what is said/not said at a doctor’s clinic and how life happens.
I have ME/CFS with Orthostatic Intolerance, Multiple Chemical Sensitivity and fibromyalgia, plus hypermobility and, more recently, a diagnosis of Functional Neurological Disorder plus the effects of a past traumatic head injury and some other stuff.
I previously worked in Biophysics research and taught Pilates in my own small business. I was single parenting with two young kids ME/CFS began. Now life is slower and my kids are grown and they try to help me -tho really they always did. I am not working due to health circs, but I am gradually developing a series of online sessions “Gentle Movement, Meditation and Management Strategies for living with ME/CFS”. I am excited about this project (although trying to pace how I work on it – I see the irony there) as it is in conjunction with an OT (who has ME/CFS), a meditation teacher and a physio with hypermobility awareness/Feldenkrais teacher. I would like to do postgraduate study but not sure if this is feasible given the unpredictability and changeability of my symptoms.
I am trying (on the good weeks) to play Petanque – my version of sport while sitting down a lot, chatting and doing a little bit of standing and aiming.
Hello from London, thanks so much for being here and for your incredibly kind words about the podcast! That's exactly where I wanted it to sit, so thank you.
A second biophysicist here! Your online series sound lovely - good luck with building that. I'm sure they'll help a lot of people. And yes, totally get the irony of pacing things like this - it's something I come up against a lot.
Not heard of Petanque before, but just googled and it looks like a great way of getting some movement and socialising in!
That sounds like such an interesting project! Pilates was the most effective thing I had to manage my hypermobility (not that I knew that’s what it was at the time) and I’d love to be able to get back to it but also have ME/CFS and am very limited in what I can do these days, what you’re working on sounds really interesting
Hi Kelly and thank you so much for your positive response to the idea. It means a lot while I am in the development stage. Hypermobility and ME/CFS co-occur quite a lot so am hoping this could keep the benefits that pilates can bring but also tone it down to a level that minimises PEM triggers.
Seconding this! Before my illness worsened, pilates was the only exercise I could do (well, 3x/week) that didn't knock me flat with PEM. And it helped me feel stronger and better, even if I wasn't making visible progress. I miss it, and I'm excited to see your series when it comes out, given you have that background.
Hi Beth I really appreciate your kind words and enthusiasm. I really hope to help people move again and build awareness of how that personally best works for them. It will be fabulous to have your interest when it is out thank you.
Hi, my name is Rachel! Thank you for creating this - online communities have definitely made me feel less alone this year and provided invaluable information about pacing and managing expectations. Just before New Year i fell ill with fatigue and a headache, and have suffered from fatigue and brain fog ever since, which is about 7 months. For about three months I was too ill to work, but am now working reduced hours in my job as a speech and language therapist. In a way it’s almost harder now as people see me out and about and assume I’m well, whereas most evenings and weekends I’m resting on the sofa, and having to plan out everything in detail to ensure I get enough rest. I also don’t have a diagnosis to help explain it to them, although I know that’s not the answer to everything!
I’ve been trying to figure out how to actually live with my symptoms rather than waiting to get better. I used to do a lot of outdoor sports so I’m trying to work out how to still enjoy the outdoors and stay within my energy limits. I’m also learning to sew as something I have always wanted to learn but never quite found the time for! Looking forward to connecting with other people :)
So nice to meet you and thank you for being here! It's amazing that you're already learning how to stay within your energy limits whilst finding ways to enjoy the things that are important to you - that's a lesson many of us (myself included!!!) take years and years to learn!
It is very definitely a learning curve and I by no means have it nailed! It's also only because lots of people including yourself have spent time sharing information about pacing that I've been able to do it - so thank you :)
Absolutely - it's ten times harder when the goalposts constantly move, and everything interacts with each other. Also being objective about what we are able to do when it conflicts with what we want to do
Hi everyone, I got my diagnosis about 3 years ago, of hypermobility, this was due to a friend who has it also and recognised it in me. So I went to the doctors and finally got diagnosed, but the pain i was getting and still get I couldn't get a doctor to tell me why, I just getting sent off to physio, which I tried to do but felt fatigued even more so. My friend I've known since senior school said I had E.D.S , I told I thought I had as I had done a lot of research . I was frustrated with my doctors I just carried on regardless working as carer with the elderly, pain was getting worse , still I carried on cos the usual thing , pay bills and keep a roof over your head. I have worked for years as carer, support worker and s[special needs support worker. I started this line of work in 2004. With pain and fatigue I still kept working , but ...... I had an appointment at the doctors for a smear test, I had no money so had to walk there. When I arrived at the doctors to see the nurse , I was in a lot of pain, ankles swollen, knees swollen and feet burning , back, neck and hip pain. I sat with the nurse and started telling how my body was > I even showed her my wonky looking (inside out elbows) by tht time I was crying so much , she asked what I did for a living , and she no wonder why you are in so much pain !! She also said it sounds like I have what her daughter has , I said in my mind E.D.S and she did. She told me she'll go and speak to my doctor straight away , I felt so relieved , and even more so when she came back to her office and told me my doctor will call me later today. The doctor called me and I went on sick leave , during that time I had to give my work place my sick notes , which I happily did, I went for a hospital appointment, was checked over by a nurse , she said my knees are too far back and checked my elbows, asked me to do few movements, which I did. She then made an hospital appointment , I was I was very disheartened and pissed off !! I phoned my doctor, and let her know. Finally I got a letter from the hospital that I did have H.E.D.S level 3. But No hospital has ever to bother to check me out , no mmri scans or X-rays, which I cant understand why. After that I went to a work capability assessment and got asked a load of questions . About a month later I finally received a letter saying I am no longer fit for work and I no longer have to look for a work or give them any sick notes. So now I'm on universal credit and Employment support allowance and I had a video consultation with P.I.P (personal independent payment), hopefully I'll get that too. I still keep my self busy , and now I know that I can rest up and not worry about working in a job that made my condition worse . I am now 51 , so you can imagine the relief I felt ,when finally got my diagnosis that I was born with.
Oh wow, I'm so glad to hear you've finally got that relief of a diagnosis and recognition. What a wonderful nurse - it really can be one person that starts to turn things around. But I'm so sorry to hear of everything you've been through. Thank you so much for sharing your story, and I hope you're able to get the rest you deserve now.
I’m Steph. Medically retired teacher and fundraising/Comms manager for learning disabilities and mental health charity.
I was diagnosed with Ehlers Danlos Syndrome aged 38 after a lifetime of wondering what on Earth was wrong with me.
Also have Endometriosis, PCOS, Gastroparesis, Slow Colon transit, multiple prolapse, CFS, NAFL, GERD, Asthma, Osteoarthritis, Osteoporosis, OSA, MCAS, Fibromyalgia, D&A, intertrigo, Hyper Lipidaemia, possible POTS / a tachycardia problem, cervical stenosis the list feels endless I’m sure there are things I’m forgetting.
I find the best ‘trick’ is learning as much as possible about what your body is doing so you can not only be your best advocate but also how best to help yourself especially where diet is concerned.
Keep ongoing food/meds/symptoms diary and include your fluid intake, weather conditions, stresses, activity and medication so you can spot patterns in your symptoms. What causes flares, what helps etc. it also means you can take it to your appointments because it really is beneficial for those treating you. It seems obvious for Gastro issues but you’d be surprised what else it can help with too.
I was first tipped off by a pre op nurse about EDS. Now I volunteer for Nai’s House a mental health charity for young people under 30
Hi Steph, thanks so much for being here and for sharing your story. I can't believe how long it takes people to get diagnosed with EDS. My old physio told me she knew some people who were diagnosed in their 60s. I've only heard this anecdotally, but I've heard of a lot of people getting dx only after getting Long Covid and hearing about it in clinics.
Thanks for sharing what helps you, and I'm so glad your nurse tipped you off about EDS. Nai's house looks like they do great work!
Nai’s House are amazing! Their approach to mental health and suicide prevention is so refreshing. Very holistic and trauma focused.
I’m also creating a sign posting project to give people ideas on how and where to get help for SEN, mental health, cater support and various other things too but it’s not ready yet x
Hi there. I have HEDS and I was not diagnosed until 23 , and since then nothing else has changed. My condition is worsening and the ligament reconstruction surgery I had has failed. I’m super frustrated and in a lot of pain.
- ME/CFS since 2016. Mostly housebound. Varied btwn moderate to severe to moderate-severe.
- Service designer, entrepreneur, management consultant, professional events. Do-gooder, thinker & doer, visionary (LOL can hardly believe that was me). Haven't been able to work since 2017. Loved my career - made a difference, built community of special creative kind people.
- learning ukulele. Have filled out 18 and a quarter sketchbook/journals in the last 6 years. Make zines. One day hope to make book from best bits of sk/ournals. Will probably be something deep about chronic illness and trauma healing.
- play ONE song a day, do only ONE drawing a week (or whatever is too small to have an impact on your health). Means you can have a regular practice of it. So you CAN sing, it's part of your daily identity. If it means an artwork takes months, so be it. You still end up having done it. It's not all or nothing.
- use mediums that don't require clean up (get into pens, forget lino printing). Put ukulele within arm's reach.
- caco nibs/hot chocolate/dark chocolate give me emergency energy
- acyclovir fixed my viral symptoms
- LDN allowed my brain fog to lift enough to have ideas again, to feel more myself
- 5 mins yoga daily prevents aches more than 2x 20 min walks a week.
- cocktail of supplements... luteolin and selenium are undersung
- radically accept limitations and oneself. Then the right people will come to you. You show them how to respect you by how you respect yourself. Have dates that are radically accessible to you. I will only have dates in my garden.
- learn to ask for help by starting with small things you don't really NEED to test if a particular person is not going to be weird about it
- live somewhere quiet where you can rest. If not, get Loop earplugs. Comfortable for side sleeping, effective.
- lots more tips, hence the one-day book
I am so sorry to anyone that got long covid. Governments have failed you.
More rambling, incoming! Hello, I'm Britt in the USA! I started experiencing profound fatigue after an EBV infection wayyy back in 2004ish, when I was only 15. My mom somewhat believed me because she had experienced similar symptoms ever since she was about 30, but she had been completely and utterly ignored by her doctors so she told me that "it's normal for an adult to feel sick and miserable all the time, and you just have to get over it and toughen up". My father, however, told me that it was "all in my head" and that he'd throw me in a mental institution if I didn't start "acting normally". So I acted normal, and proceeded to constantly push-crash for almost two decades with little help or support.
I did manage to graduate college, but it was rough. Lots of failed classes, and I spent most of the time locked up alone in my dorm room. I also didn't have proper health insurance so I couldn't really seek medical care, and my family wouldn't help me get insurance. But that's okay, because one time when I went to the emergency room a doctor advised me to never mention chronic fatigue again and keep it out of my medical record, otherwise my doctors will think I'm a malingerer and refuse to help me. So I stopped going to the doctor entirely!
After college I married right away and with the financial support of my husband I was able to survive on my own, even though I struggled to maintain employment for more than a year or so at a time because I kept having health crises (which of course I managed alone). I first worked at homeless shelters, and then learned how to code and became a web developer. I also practiced a lot of yoga and got into endurance cycling. Riding my bike made my energy crash afterwards, but since I didn't experience flu symptoms I wasn't sure that I had post-exertional malaise, so I wasn't sure if I would qualify for an ME/CFS diagnosis or not. And I thought I was supposed to exercise in order to maintain my health. I also came down with EBV virus relapses at least once a year if not more, which would leave me feeling oppressively fatigued and with a very increased need for sleep for months at a time.
Fast forward to 2017...my husband and I acquired a strange infection that kept coming back for several years. We both had weird symptoms like chronic hives, periods of exhaustion, and cramping in the back of our calves. I tried to get help, but hundreds of lab tests and visits with over a dozen different doctors didn't yield any results. Eventually in 2019 I developed numbness/tingling in my extremities, joint pain, relapsing fevers, very severe muscle pain, sore lymph nodes, horrendous nausea and dizziness. I completely crashed and became unable to exercise, and unable to work. We couldn't pin down a source of the infection, so I tried experimental antibiotics with a lyme disease doctor which helped me with most of the acute infection symptoms. However, afterwards I was left with a more obvious case of ME/CFS.
After 18 years of hell, I'm finally about to visit an ME/CFS specialist for the first time ever. I've never, ever worked with a doctor who knew anything about my illness. Ever.
All I want right now, more than anything in the world, is to have a baby. So I want to find enough support and resources to make that happen. After that, I'd like to get a master's degree and become a mental health counselor, specializing in working with folks who have disabilities. Almost certainly just part time. I'm also the co-founder of a mutual aid project in my local city which aims to connect folks who live with disability so that we can create support networks and all help each other out. While I'm out of work, I've been learning the banjo and starting a garden. But mostly, I've just been resting and doing a LOT of therapy. I've realized that most of the hardship in my life has come not from my illness, but rather the complete and utter lack of support, accommodations, and love. I'm just getting into reading again for the first time as an adult...I had no idea that my auditory memory was less impaired than my visual, and it turns out audiobooks are a great help to me!
Hi Britt, thank you so much for being here and sharing your story. I’m so sorry you’ve been through such. Hard time and haven’t had the love and care that you deserve.
I love that you’re working to support others in your community and getting support through therapy. And I’m so glad you’ve discovered audiobooks - and banjo?! How cool is that!
I’m Lia. I got sick with ME/CFS in 2015 and had to switch from being a multidisciplinary composer/performer to focusing on writing and fibre arts. I’ve been working on a series of embroidery pieces exploring my various symptoms.
I became disabled in my mid-40s and have been so in awe of how supportive the chronic illness and disability communities are.
Oh wow, I just quickly scrolled through the essay (have added to my Instapaper to read tomorrow!) and the embroidery is beautiful. I can't wait to read your essay. Thank you so much for sharing!
Hi everyone! I’m Madelleine. I just started writing on Substack. I write about living and writing with a chronic illness — on creativity, feminist personal development and observations from my bed of this uncertain world. I think it will suit my broken body and mushy brain, not having to be a slave to algorithms and being able to write what I love, not on demand. I’ve been ill with ME since 2011 and mostly bedbound since 2018. I wish I had known about pacing when I became ill — like for real pacing, not just ‘stay within your envelope’, but wearing a heart rate monitor and knowing that I should only be doing 70% of what I can do, and not near 100%. Thank you for your work, Natasha!
Hi Madelleine! Thanks so much for being here. I can definitely relate to the benefits of writing on somewhere like Substack, compared to feeling like you have to constantly feed an algorithm. It helps a lot! Good luck with your Substack - I've made a note to check it out when I'm back from Germany :)
Thank you so much, Natasha! Tomorrow my second post is going out and I’m loving it so far. It’s so much easier and ‘brainfriendlier’ to write when I ask: what do I want to share today? rather than ‘what can I say that will give me the most likes’. Good luck on your trip to Germany — I’m in neighbouring Denmark.
I'm so glad you're loving it! I also find it's so nice, as you said, to not have to think about likes and focus more on actually having the time to think and explore!
I’m pretty new to Substack but saw you had created a space for this community in your welcome email and wanted to check it out. My name is Julia, and I was diagnosed with uveitis, a rare autoimmune disease that can cause you to lose your vision, nine years ago. I spent the first seven of those years not really telling anyone about it. My mom came with me to doctor’s appointments, but that was about it. I think I was afraid no one would understand, or start seeing me differently, so I went through it all alone and… it was awful. Then my condition started getting a lot worse right as Covid began. I was living in LA at the time, writing for TV shows, but decided to come home to New York to be closer to family and focus on my health.
I’ve now been here in NY for a little over two years, and while my condition has gotten a lot worse, it’s pushed me to finally open up to people and share what I’m going through (here I am, writing a public newsletter!) Essentially, it turned out none of the immunosuppressants they tried would help me, and so I’ve had five eye surgeries this year alone to try and save my vision. I’ve essentially been either in my bed or a doctor’s office/ hospital this entire summer, and I’m still not out of the woods. But I recently found that in my desire to try and update friends about what I was going through so I wouldn’t feel so alone, I thought of trying out this newsletter. I only published my first post last week, so I am very new to all this, but I am so happy I did. It felt incredibly therapeutic to channel all of this into a piece I could share instead of just having these thoughts stay in my notes app, and it’s a great creative outlet as well. I also had no idea there was such an incredible community on here, and have really loved checking out all these other newsletters on chronic illness.
A bit about me: I work as a comedy writer for animated shows and The New Yorker. While I’ve worked as a writer my whole life, this newsletter is the first time I’ve ever publicly written about my chronic illness and it’s been great but terrifying. I also really love listening to/ playing music and painting. I’m excited to be here and to keep reading all of your amazing work. ❤️
Thanks so much for being here and sharing your story. First of all, can I just say wow a cool job you have!
I'm so glad you feel that writing about your experience has been therapeutic - I can relate to how lonely it can feel to hide, or to not be understood. I definitely can relate to it being a creative outlet - and for me it almost helps to like...i don't know the best way to put this...externalise what's been going on and turn it into something that could potentially be helpful to others. It takes it outside of me and that helps a lot.
Hi Natasha! Thanks so much! I actually checked out Visible after reading your intro and it looks incredible.
Yes, I think there’s just always that fear of your illness because misunderstood when it’s hard to comprehend or relate to. But ultimately, it’s always worth it to try, and see who makes the effort to learn about it and inform themselves. And I relate to this feeling of externalizing a lot. It feels so nice to have these thoughts out in the world, and being able to connect with others, rather than keeping it all in. Anyway, thank you for creating this space! And if you have newsletter tips since you seem like a pro at this, I would really appreciate it :)
Hi Natasha. It's always nice to meet a fellow Spoonie. And I love to see people getting the word out on what life is like, battling the ins and outs of your body.
My name's Andria (Andi), and I've wrestled with primary diagnoses of fibromyalgia, migraines, and IBD since my early 20s (actually, the fibro didn't receive a confirmation until later). I've also struggled with Lyme, and I'm trying to get SOMEONE to figure out what's going on with my thyroid levels. (Good times)
I spent a solid 10 years in a funk over not getting answers before realizing I had two options: Continue on that path or take the opposite fork and at least find the humor in the situation. So now I use my writing to poke fun at the situation whenever I can (Invisible Inks is my Substack and weekly satirical outlet for invisible illness). But I also try to work the topic into as many of my essays as possible, to raise awareness and call attention to everyone fighting for the same answers I do.
And people respond to humor. So I figure it's a win-win. And, luckily, writing is at-home kind of job, so I don't have to fight with managers any more when my body decides it's had enough.
Thanks so much for being here and for sharing your stories! I can HARD relate to trying to get someone to figure out the thyroid stuff. I've been trying for over a decade and only FINALLY am getting it looked into now. I really hope you can get some help with it - it's shockingly bad how often that's ignored.
I love that you've found a way through this with humour - I definitely think it's one of the most underrated things. I look forward to checking out your Substack!
hi! i am kenzie. i am 16 years old and i was diagnosed with fibromyalgia, ME/CFS (myalgia encephalomyalitis/chronic fatigue syndrome), POTS (postural orthostatic tachycardia syndrome), and SFPN (small fiber polyneuropathy). i was in 8th grade when i got sick for about 3 weeks with coughing, ear infections, nausea, not being able to keep food down, headaches... basically all the symptoms you can think of. after the worst was over, i never fully recovered. my older brother has POTS as well and it took us a while to think that maybe i could have the same illness he has. i was finally diagnosed when i was 14. it’s hard to believe i’ve lived with this chronic illness and pain for 2 years already because it seems like it hasn’t been that long. i had to drop out of 8th grade because it was too much for me, tried to go back for 9th grade, dropped out, tried again for 10th grade and had to drop out again. it’s just so frustrating for me to have to make decisions about my future with high school and everything at such a young age. my parents have been amazing and understanding but it’s just hard. i’m definitely better than i used to be a year ago! still just trying to do my best & i love this idea, thank you for making this!!
Hi Kenzie, thank you so much for being here and for sharing your story. I'm so glad to hear your parents have been so supportive, but I'm so sorry you're having to experience this at such a young age. Doing our best is all that any of us can do!
I don't know if you saw, but I interviewed one of my childhood best friends about her experience of becoming sick at 12 and reflecting on that experience at 33. It may be of interest? https://natashalipman.substack.com/p/chronic-illess-me-child
Hi Im Amerdeep. I was diagnosed with fibromyalgia a few years ago and work full-time. I'm currently working on balance In my life as working full time us not possible anymore. My life consists of working and then resting to recover. I write and set up my own website blogging last year. Thus had taken a pause out of fatigue.
Feel kind of stuck. I had a plan to get out of work and perhaps work for myself but pain and fatigue has stopped that. I don't have the energy to build anything new after work.
Thanks so much for sharing your story and for being here. I can relate to the working and all my spare time is recovery for that. What kind of support do you feel like you need in order to make that progress that you want?
Gosh... That's a good question I'm not even sure. I know I need more space and time in my life to not be working so I can create and write. Support... Hmm honestly don't know.
Hi everyone! Arriving here a few days late and am overwhelmed (in a good way) by all the replies; really looking forward to reading through more of the posts later.
I'm Zsofi, an art historian/writer/artist from Chicago, currently living in Berlin, about to move back to the US (Washington, DC). I travel a lot for my research and so was diagnosed with HSD via Zoom by a wonderful physical therapist in Chicago while I was living in Paris, in early 2021. I had been dealing with chronic joint pain and fatigue for 5+ years, but none of the doctors I saw in Chicago ever suggested HSD. It was my psychotherapist who had a cousin with EDS who suggested I research those diagnoses myself.
Then I got a formal diagnosis at an EDS/HSD-specialized clinic in Paris later that year––probably the greatest foreign language practice I've ever had. I was one tickbox away from an hEDS diagnosis but couldn't prove family history (a bit of a chicken-or-egg situation). I moved to Berlin in January 2022 and quickly found there were exactly zero healthcare providers in this city specializing in EDS or hypermobility, and was promptly gaslit by several doctors. Osteopathy has been the most healing and validating thing, but of course not covered by health insurance. Thanks to an osteopath in Paris, I cut gluten from my diet a year ago and the pain has drastically subsided. I've also self-diagnosed IBS but am still looking for a good healthcare team to help me navigate and manage my constellation of symptoms.
I've been searching for an online community like this for so long, and Natasha's podcast has been the most wonderful thing. I felt super emotional the first time I listened to it, and honestly want to move to the UK so I can have an OT like Jo!
My friend Emily and I are in the process of making a zine called High Functioning that explores, through art and humor, the gray area of being chronically ill and/or in pain, while appearing "not sick enough" to be taken seriously by doctors, mentors, partners, loved ones, etc. Submissions are still open if anyone wants to share art, writing, rants, comics, anything: https://www.instagram.com/highfunctioningzine/
Thanks so much for your kind words and for being here and sharing your story! So interesting you say that about osteopathy - anecdotally, it's something that has helped a LOT of people (myself included). It's a shame, my osteopath used to work in GP offices, but they stopped her funding so now works privately. Getting my body realigned is such a gamechanger for me. I honestly said I don't want to move from my area literally just because of my osteopath!
Good luck with your Zine - I can't wait to see what you do!!!
Hey! I'm Bryony. In 2018 I was diagnosed with severe stage 4 endometriosis. One of the hardest things was that GPs were largely interested in focusing on my pain experience as the result of my mental health. I also live with PTSD but my pelvic pain was no less real and should never have been dismissed this way. I know a lot of people with chronic illness struggle to be heard. The impact of a diagnosis with a condition that was so far advanced was really difficult and I have now developed persistant pain which is there everyday now. I will always wonder if I had been listened too sooner that this may have been different?
My experience has made me want to use my love of cartoons and graphic novels to convey the reality of living with a chronic illness to others and I hope that it will break down misconceptions surrounding long term illnesses too. Recently I made a short comic that mimics an alphabet book. It's called: My First Endometriosis Alphabet (https://bryonyattenburrow.com/my-endometriosis-alphabet/). If it raises awareness of the impact of endometriosis as well as a wry chuckle or two I would be so happy!
Thank you Natasha for your podcasts and writing around chronic illness. Your research and informations as been so helpful!!!
I really love how you use your art to convey this reality, I always enjoy seeing what you post. A wry chuckle with awareness is always a good combination in my book!
Love this idea Natasha thank you! I'm Dolly! I graduated in 2016 in Forensic Chemistry & since then things went downhill quite quick. I had symptoms of food poisoning for 18 months, lost 5 stone, had various tests & procedures, & ended up being in constant pain, unable to get out of bed. A while later was diagnosed with fibromyalgia and have never been able to get back to myself since. (Fibro is something I don't think I have due to the nature I've got worse). I'm Unable to work or do most daily tasks, & if I get out of bed I usually call it a good day. It's been a constant battle from the start of my symptoms to this very moment. Managing chronic illness takes over your life & I just can't push through stuff anymore, left empty. Fighting doctors for help is a common theme, especially when I'm at my lowest & nothing seems to help. (doctors say just go for a walk like its that easy now). I keep myself busy crocheting but find I'm even a bit burnt out from that. Hoping one day I'll get a proper diagnosis & treatment so I can get back to work, but even then worry it would be too long a gap of unemployment. I didn't pay £9k in Uni fees for 4 years to live life indoors, skint, starving & fighting for daily life😂😭😭
So, I was thinking about starting a home makeover/konmari-style Instagram spoof for chronic illness where I show that today I folded ten shirts and then napped for an hour. Or like, before and after of a coffee table that I spent 5 min tidying.
I feel like I need something to express myself right now, and sort of like my great sense of loss of my former life, but also that I’m still a person and can be silly. What do you guys think?
Hello, I’m Tamsin living in the south west UK. I have lived with chronic pain and fatigue after having glandular fever in my late teens. In my 20s I was diagnosed with auto-immune hypothyroidism and, subsequently, fibromyalgia. I’m now in my 40s and in the last five/six years I have discovered I have a congenital neurological condition called Chiari malformation and syringomyelia. This was discovered on an MRI I had to investigate chronic migraine. So I’ve had a lot to get my head around this last few years!
Over time I have gradually learnt to pace, properly rest, say no when needed and most importantly enjoy the good times when I have energy for doing things. Actually, I’m still learning to do most of those things...
I work for a learning disability charity, part time from home, and when energy and my kids allow, I love to sew - patchwork, quilting, textile art.
Thanks so much for sharing and for being here! I'm so glad you've started the process of learning these things...I think it's a long process for so many of us. I'm still learning every day too :)
Hi friends! I'm Nita, and I'm passionate about reducing sentient suffering through chronic disease prevention. I identify with consilience, minimalism, effective altruism, and intentional living.
I have been sick for half my life with various conditions including chronic cystitis, dysautonomia, inflammatory bowel disease, polyneuropathy, seizures, and Ehlers-Danlos syndrome.
My goal is to translate my experiences into educational resources in order to effect positive change and encourage patient advocacy. Towards that end, I host a health podcast aimed at advancing scientific literacy on topics like longevity, metabolism, and the gut microbiome.
Thanks for creating this forum, Natasha! Looking forward to connecting with all of you!
Hi Nita, thanks so much for being here and it was lovely to meet you at Substack Grow last week! Didn't realise we have EDS in common. Hope to see you later!
My name is Elizabeth and I'm an artist/theatre director/actor, producer of plays, and TEFL teacher in training based in Los Angeles.
I have EDS, POTS, and MCAS, and was finally diagnosed in 2020 after fifteen years of active searching and a lifetime of weird symptoms (iykyk).
I'm currently working as director and background artist for a 9 short-episode animated series (think DnD meets Dark Souls meets really stupid). Keep updated on that release @h3rmart on Instagram.
I am really enjoying reading everyone's introductions and stories! Thanks so much for providing the opportunity, Natasha! I am a yoga therapist in Portland, Oregon, in the upper left corner of the US. I'm one of those people who hasn't been diagnosed with anything beyond IBS, anxiety/panic disorder, multiple food allergies and eczema...but who is always very vigilant about my health and I often feel like I'm just one illness or injury away from some sort of autoimmune disease diagnosis. I'm a former librarian and love to read uplifting memoirs about women living with chronic illness, so I'd love to hear your suggestions! I started a podcast this summer called, Swimming & Singing: a podcast for spoonies and the people who love them, where I chat with folks who have chronic illness (or work with folks with chronic illness,) and we dive into the ways we can find joy in life amidst the pain, exhaustion and overwhelm. Check the podcast out here: https://www.sarahnelsenyoga.com/podcast and if you've got something you'd like to share on the podcast, I'm always looking for guests! Speaking of podcasts, I'm a huge fan of The Rest Room and often recommend it to clients!
Thanks so much for your lovey words, Sarah! I’m looking forward to checking out your podcast! Have you read an invisible kingdom by Meghan o’rourke? It’s excellent!
Yes! I really liked Invisible Kingdom! And I'm slowly working my way through A Still Life by Josie George, it's a book that feels like it needs to be savored! Highly recommended!!
Hey Sarah, I'm in Seattle! I'm definitely going to sign up for your email list, I've been trying to get back into yoga at home recently and even though I have my yoga certification from a decade ago, starting a practice back up with my body has felt somewhat overwhelming. Thank you for sharing!
Yea, we are neighbors! I'm a huge fan of practicing yoga in bed...kind of a combo of restorative and super gentle movement/stretching. That's great that you are a certified yoga teacher! Teaching has changed a lot in the past few years, (Covid,) and there are so many different sorts of online opportunities. Let me know if you ever want to chat yoga! :)
Hello! I'm Stacey! Thank you Natasha for all the work and advocacy you do for the chronic illness community, especially those with ME/CFS.
I too have ME/CFS and am a writer. I am fortunate to work as a Spiritual Teacher / Director, which means I get to do work I love with amazing people from around the world on a schedule that allows for strict pacing and rest. It can be a lot to juggle, but I've found a way to make meaning in it all and enjoy the more physically limited life I now have.
Hello Natasha! Thank you for providing this space to let people share their stories. I've been enjoying the posts from your readers. Their perspectives have been helpful to understand my own struggles and in developing empathy for fellow humans. Here is my contribution.
I'm Eve! I'm a mother, spouse, daughter, member of an extended chosen family, retired educator, VFX artist, and filmmaker, residing in North America. Finally, I've been properly diagnosed with mental and physical illness that I've been struggling with since birth. Symptoms from these disorders include - chronic fatigue, trouble keeping focus, memory loss, severe mood shifts, narcolepsy, slurred speech, and vertigo. I'm able to manage my conditions with strict diet, daily exercise, and work/life balance protocols. If I don't maintain a very specific routine, I'm rendered immobile for days. (I've chosen to keep my diagnosis private :)
Receiving a proper diagnosis has been very empowering for me. Many of my symptoms were misdiagnosed throughout the years because of my gender. Medical professionals would blame hormones during my teenage years and into my adulthood. I was prescribed medicine that was ineffective in treating my symptoms or would cause new ones. When I complained about this to my doctors, they would dismiss my experience and encouraged me to continue with the treatment plan. In art school, my peers assumed I had substance abuse problems, which caused further alienation. In my mid thirties, I was properly diagnosed with a series of metabolic disorders by my mother who observed me eating at a family party. (My mom is a nurse, but it took her 30+ years to figure out my issue...) Because I had an "ideal" body type, no one ever thought any of my symptoms were caused by the food I was eating. After I got control of my energy issues, I realized that I continued to have issues in my professional life - failure to finish projects, stick to deadlines, and focusing on task. My therapist suggested to read several books regarding my metabolic disorder. In reading, patients who had these disorders also struggled with mental health issues. The mental health issues had similar symptoms to what I was experiencing. I talked to my doctor and got tested. I was then diagnosed as neurodivergent. Identifying my issues has been so liberating! I finally have the means to communicate with others what my needs are and why. I'm glad that our culture is at a turning point where more people are willing to listen and support patients with chronic illness. There is a long way to go, but I feel so much progress has been made in my lifetime, so far. Instead of surviving, I'm beginning to thrive in my personal and professional life by knowing and respecting my limitations.
Thanks again for maintaining this community and producing important work!
In September 1989, I started my dream job; teaching high school physical education. But, five months later, before the end of my first year of teaching, I was diagnosed with multiple sclerosis. Ten years later, I left the only job I ever wanted due to worsening symptoms of MS.
In 2001, I returned to university to pursue graduate studies at the University of Toronto. My ultimate professional goal was to teach and supervise others keen to enter the teaching profession. In 2005 I graduated with a Ph.D. in Teacher Development. My research focused on the impact of chronic disease on teacher identity. I never secured a tenured position as a teacher educator and went on long-term disability in 2007.
Fourteen years later, I discovered my life was richer when I focused on living with MS as my best self. This shift in mindset opened the door to a newfound purpose in life; to help other women with MS to do the same.
Hello! I'm so happy to be here as I've been following your work for years, Natasha!
I have classical EDS and was lucky enough to be diagnosed at age 10. But the only thing doctors did for me then was to say "be careful," so I didn't seek any kind of treatment until I was 30. I wish I'd known earlier that no cure does NOT mean no treatment. It still shocks me how much having appropriate medical care improved my quality of life.
Things changed for me in 2020, when I had a vertebral artery dissection and series of strokes. As I healed, I felt deeply called to help more disabled writers tell their stories.
So after years as a professional editor, I'm now an editor and book coach who works exclusively with chronically ill and disabled writers! It has been so rewarding. The creativity of this community is incredible.
My memoir, Floppy: Tales of a Genetic Freak of Nature at the End of the World, won the Red Hen Nonfiction Book Award (a literary nonprofit in California) and comes out in May 2023.
I live in the States with my partner and two postural support kitties (i.e., they insist that I lie down to provide a lap OFTEN). I also draw comics and make greeting cards for people with EDS.
Thanks again for creating the space. Looking forward to getting to know you all!
Hi, I’m Claire! What a fantastic idea to create a community space. Glad it includes the word ramble as I tend to write long rambling posts.
I’m a scientist by training with a BSc in Biochemistry and a PhD in drug discovery biophysics. I’m now a product manager role for a global life sciences company, a role that enables me to work from home. Luckily I have a VERY understanding manager, I’m off sick in bed as I write this.
So here’s my story. I was diagnosed with Joint Hypermobility Syndrome in 2012 towards the end of my first degree. I was struggling to walk due to ankle pain and my cousin had recently been diagnosed. When I heard about the condition and her symptoms, all the daily aches and pains, clumsiness, bruising, fatigue etc.. made sense. At my first assessment I was told I couldn’t possibly by hypermobile because I couldn’t touch my toes! But that was “good” because there are “no treatments for it” and I would be “better to have something like Lupus” 😱 It was a podiatrist who said my ankles were crazy hypermobile and referred me for my diagnosis. I managed to complete two degrees on pure adrenaline and lots of boom and bust cycles.
Fast forward a few years, with various physio referrals, pain meds, a couple of city moves and lots of “self management” found via Instagram. Also an amazing pilates teacher who understood hypermobility and built me back ‘piece by piece’ in a gentle way over years. I was coping “ok” and considered my fatigue and joint pain mild compared to others.
In 2019 I was diagnosed with quite advanced acute myeloid leukaemia after being ignored and having my symptoms dismissed for two months. The symptoms include fatigue, joint pain, easy bruising, sound similar to any other chronic condition? After a year of very aggressive chemo, mainly in hospital in isolation, to knock out my immune system I was finally in remission. Then enter covid. 18 months of shielding until it was deemed ‘safe’ for me to re-enter society.
Of course I did what any good cancer patient does and followed the advice to exercise to improve my fatigue, following a graded exercise programme, going out and socializing, throwing myself into work, setting myself walking challenges to raise money for leukaemia charities. I focussed on Pilates to get the muscle strength and stability back that I’d fought so hard to improve in the heads before. Trying to get back to normal old me. I nearly died, so of course I wanted to live my life.
Initially my fitness and post-cancer fatigue improved but then got a nasty viral infection and crashed. The more exercise I did the worse I got. Fatigue levels almost as bad as when I was on super strong chemo. My cancer doctors told me this was not cancer related as I was so far out of chemo and kept ‘prescribing’ exercise and pushing through. Enter an ME/CFS diagnosis at the end of 2021. In recent months I may also be looking at a ‘long covid’ diagnosis on top of that.
So after this long ramble, I’m currently undergoing an energy management course with Bath Centre for Fatigue Services (thank you virtual appointments). Learning how to pace, and being bad at truly resting, while listening to your amazing podcasts Natasha that put it all into perspective and give me hope that I will manage this. My current aim is to find some kind of baseline activity over the next 6 months and also allow myself to rest, recover and recharge.
Trying to explain to people why I’m not ‘better yet’, and navigate some emotions around the support I had from friend and family when I had a tangible (hopefully curable) illness vs. an ongoing saga of never feeling well and the relationships being lost along the way. Looking to meet people who understand these feelings.
The creative part: I started an online handmade jewellery business (NatureInTreasures) but Etsy shut down my page because I wasn’t able to manage it during the Leukaemia year and now I think I’m blacklisted. Perhaps I should find some time and energy to reopen it! It was quite therapeutic at the time.
Looking forward to getting to know everyone in this community and hearing their stories. If you made it this far, thank you!
Hi Claire, thank you so much for sharing your story! I too, love a good ramble so I'm glad someone else enjoys the name.
First of all, what is drug discovery biophysics? That sounds fascinating! I know this probably isn't what you do, but I'm really interested in learning more about medication interactions with the brain - having gone psychotic on a few meds, I want to understand why!
You know, one of the things I found most frustrating about the name change to hEDS was that misunderstanding that in order to be significantly impacted by hypermobility you need to be super bendy. I wonder if there are different 'strains' of it - in the sense that some of us are rock solid as our muscles have massively overcompensated to make up for the hypermobility in an attempt to protect our joints. And the fact that that often isn't represented or recognised is really frustrating.
Thank you so much for sharing your story, and I'm sorry you've had that "pushing through" experience that made things worse. I could also relate to getting through degrees on adrenaline - even now I still rely on it and breaking that habit is SO hard.
How are you finding the care with the fatigue services? I'm so glad you've been finding the Rest Room helpful among the other things you're doing - and I really hope you're able to learn how to rest. It's something I still struggle with a lot - my mum literally yelled at me about it on Friday :D
I just looked at your shop and can see from the reviews - the earrings are lovely!!!!
Thank you again for your comment, it's so lovely to have you here.
Haha drug discovery biophysics is the short way of summarizing a very specialised PhD that bores most people to death, but since you ask! I was developing what’s called a platform technology to help discover more effective drugs with fewer side effects. I was using a machine called Biacore to measure molecular interactions between drugs and their intended drug target. You can also check whether they interact with other targets that would lead to side effects and ‘deselect’ those in the process. So a bit like this platform is for all spoonies with different medical conditions, the same platform could be applied to any disease really. The day they find the molecules responsible for EDS or ME/CFS I’ll be right on it! But for now academic research is too inaccessible to me. Now I work for the company who supply this technology.
But getting back to your question about the brain… I am not an neuroscientist so I really have no idea. But most likely the drugs are binding to some other receptors in the brain to cause these side effects. In theory the drug could be designed to avoid that, but identifying the mechanism can be really tricky and requires a lot of people smarter than me 😂
Woah - honestly doesn't bore me AT ALL - that sounds fascinating! I'd love to learn more about it!
And yes totally agree with the new classification. I don’t actually know what to call my condition anymore because I haven’t seen a rheumatologist since the classifications all changed. I’m 8/9 on the Beighton score but my back was rock solid for overcompensating and still tends to scare most physios how tense it is!
I have to say that the fatigue services care has been impressive so far. It’s refreshing to speak to medical professionals who get it and believe me about my symptoms. Going through it at the same time as listening to your podcasts has helped me see how it can work in ‘real life’ and set some expectations. As a scientist I have a lot of perfectionist tendencies and like data, so I’d be likely to try to design the most perfect unrealistic energy management plan to try to stick to. I’m still too early in the process to say if it’s helped and I got covid immediately after completing the course too 🤦🏻♀️ But the process of having an occupational therapist guide me through some of this stuff has helped reframe the way I feel about it all.
K'm so glad to hear that the care you've got from the fatigue service has been good - and I love that you can use the podcast in combination! That's so awesome. And yes, I totally get the perfectionistic tendencies and data thing :D
and just on the Beighton score, I have a supppper interesting podcast ep coming out very soon about EDS that I think you'll really enjoy.
That's exciting! My knees bend backward regularly and I have some other hypermobility, but was told I "couldn't" have EDS because I can't touch my toes and I can't touch my thumb to my forearm. I had no idea there was a scale, and other symptoms that could be used to determine diagnosis, nor that the body would try to protect itself by stiffening (my back, and especially my neck and shoulders, have always been rock hard to the point of painful, despite regular massage...hrmmmm....) I look forward to hearing this upcoming episode!
I’m another one who missed out on an EDS diagnosis because I can’t touch my toes, even though I have the characteristic skin scarring and almost every single joint in my body is hypermobile (thankfully my knees are the most stable of the lot which is a real saving grace).
The most perfect unrealistic energy plan also really rings a bell with me, I saw the fatigue service in edinburgh who called me out on designing perfect plans rather than actually liveable ones (funnily enough my undergrad is in neuroscience but I was unsure if I should do a phd so took a year off to see if I missed it, then never went back)
I totally get this! And maybe we should team up to answer Natasha’s question then 😂
Haha, neuropathic pain pathways and the neurotransmitters used for signalling in them were my focus and what I’d planned to do a phd in. We could have had a beautiful partnership 😂
oh well that's bloody interesting!
Yes!
Hi Claire, from another Claire, I also have a diagnose of ME/CFS and can relate to much of what you said. I have heard good things about the Bath Fatigue service, mainly after coming across the work of Ian, who created a cook book for those with brain fog as a result of brain. Not sure if cooking if your bag, but worth having a look at https://www.bbc.co.uk/news/disability-56536589
Hi Claire! Thanks for being here :)
Ah I'm meeting with Ian on Zoom today!
what a spooky coincidence ...I found his work really important as someone who put mustard in a crumble once when cooking .... But I find cooking so therapeutic and love bringing people to the table
Yes! I've been building up doing things around the house and I now am the part-time sous chef and it feels really lovely being able to contribute to a meal by pacing the prep throughout the day to help my partner make the meal in the evening!
Oh definitely this looks great! I love to cook but recently my spoons have been going to other things and I basically live off mindful chef ready meals and deliveroo 😂 Maybe this can be the inspiration I need to start again!
Aww yes! There are lots of lovely tiny steps to the kitchen too. Lydia Wilkins has written a book coming out later this year about cooking with tips for autistic people but there's a lot of overlap for people who generally struggle in the kitchen with fatigue and brain fog. And Ian Tavener at Cookfulness does a lot for people who struggle in the kitchen too!
Thanks for sharing this! Cooking and baking were the last things I've been forced to give up due to my illnesses (I stubbornly attempt to cook once/week, regardless of how I'm feeling, because I love it so). I've been relying on pressure cooker and air fryer recipes to reduce the amount of time I have to be upright and cognizant, and I had no idea there was a cookbook out there for people like myself. I'm buying this one ASAP.
You're welcome!
As everyone else has said, I had to give up cooking and I can’t wait to see this book!
Hi Natasha
I'm Claire and I have a diagnosis of ME/ CFS. it was only since Long Covid came to light did I feel compelled to share my experience publicly. I do that now on my own sub stack page, I joined in July, as a way to find other people who would be interested in sharing how to navigate the softer aspects of life of chronic illness, not prescriptions and pacing, but rather relationships, romantic, friendship, familial, sense of self, work, isolation, mental health. All that secondary suffering that remains unsaid. Previously I worked as Creative and Researcher in London in creative agencies, but since resigning from my job in 2016 due to health reasons, I have floated about trying to work out how to make work, work for me. Creativity has been hugely important to me, drawing, learning to sew my own clothes, reupholstery and now writing. I see a big link between creating and making sense of the world. Glad to be here and perhaps we can collaborate in the future.
Hi Claire,
Thanks so much for being here! I've been reading some of your articles this morning and enjoying your Substack. I'm so glad you felt able to share. What was it about Long Covid that made you feel compelled to share about your experiences?
And yes, I totally agree, that "secondary suffering" side of things is such a challenge. When I talk about things I wish docs would have talked to me about it was about all of that stuff - the stuff that makes a life. I totally feel the same way about creating and making sense of the world - writing is how I do that.
Feel free to email me if you have any ideas for collaborations :)
Seconded on the “softer” parts of life. I’d love to hear more on this.
Thirded!
Yes I love this, I spent so much time believing that the "softer" parts of life didn't matter, or that I didn't deserve them and I had to just toughen up and go without.
Claire, your substack has the BEST name! Looking forward to reading more of it. Creativity has made a huge difference for me too. A bit morbid, but I learned to sew so that I could make a shroud for my dog, Bella, when she died of cancer. It was one of my most meaningful experiences since my life was broken by CFS/POTS.
Oh that is so beautiful <3
I subscribed to your substack, Claire, and looking forward to reading more! If you'd ever like to chat for my podcast, it sounds like you would be a great guest!
Hi Sarah, Thanks so much for your message and subscribing I would love to be part of your podcast, i'll send you a message thank you
Hello,
I'm Ed. I have had Long Covid for a few years and this is how I discovered Natasha's work.
Prior to getting Long Covid I worked as an Assistant Principal in an Academy in Ladbroke Grove W. London. However Long Covid has meant I have had to undertake a career change and I am currently working on the content/community aspect of a platform to support people living with energy-limiting conditions called Visible which is very exciting.
As soon as I listened to a few of Natasha's podcasts and read some of her articles I knew that she was someone we would like to get involved with content at Visible. It has been great to get to know her and see her take the lead on content.
My Long Covid means that some of my older hobbies have had to take a backseat but I am still music obsessed and when energy permits love digging for records.
Hi Ed,
Thanks for commenting - it's been such a pleasure getting to be part of Visible. I'm really excited about what's to come.
Something I've thought about a lot is the experience of kids with chronic illness (not sure if you heard my latest podcast ep) and what things could be implemented at an institutional level to help them. Since getting Long Covid, have you thought about this at all? Would be super interesting to think about.
And ooh - love the record digging! Got anything good recently?
We have thousands of records— literally!! Bandcamp has been a favorite way for me to dig from supine lately!!
Hi, I'm Emily and I've had long covid for two years. I wish I'd known in the beginning how to pace properly, that using mobility aids and adaptive equipment would make me feel more able to do things, not less, and that it's possible to live a good life with a lot of joy even with a malfunctioning body and a ton of really annoying limitations.
The Rest Room has been a big help in figuring out to live well with long covid. It also prompted me to finally try learning Spanish even though I have brain fog. I'm not aiming for fluency, just to have fun with it and learn something new. I'm really enjoying it and though there's some days where it makes no sense at all (usually the ones where I could say the same about English) I'm amazed at how much I've learnt in the last few months.
Hi Emily, oh gosh yes those are things I wish I'd known at the start too. I genuinely believe it would have made such a difference.
I'm SO glad The Rest Room has helped you! And that you're learning Spanish! Literally delighted! How are you going about learning?
I'm mainly using Duolingo, which is surprisingly brain fog-friendly. I also follow a few Spanish accounts on twitter and try deciphering them when I have the brain for it. I'd like to use Spanish books and TV to learn eventually too. Duolingo's already taught me the most useful sentence it ever will, estoy muy cansada y quiero dormir ahora - I'm very tired and I want to sleep now!
Well that's the most important sentence! I'm so glad you've found duolingo helpful!
Hi, I’m Kelly and I’m so happy you’re doing this! I’m in Scotland and have always had bouts of pain and fatigue as well as various autoimmune issues but would push through them and not understand why I couldn’t keep up with others, till 3 or 4 years ago when it all came to a head and I was diagnosed with hypermobility and ME/CFS. I went down to 4 hours a day of work from home and was doing ok then caught something that was likely covid in late 2020 and apart from a couple of failed attempts to go back have been signed off work pretty much ever since. I’m a corporate librarian for a huge global company and they’ve been very flexible with me, but it’s hard to get my head round not even being able to do an hour or so from home because my brain fog is so intense. I used to volunteer for a helpline, was a charity trustee, sewed my own clothes, worked long hours, went to the gym… I don’t sew anymore, I tend to dip into knitting over the winter but put it away in summer. I do have lots of indoor plants that I love looking after and propagating, and 2 cats that really help me day to day (including a young one that is mostly responsible for the plant propagation, every time she breaks something off a plant I stick it in fresh soil 😂). I’ve been thinking about getting into embroidery but the same cat can’t really be trusted with thread lying around. And I’m just starting to be able to read books again which I really, really love and missed being able to do.
Hi Kelly,
Thank you so much for being here and sharing your story!
Gosh, this pushing through only to get diagnosed with hypermobility seems super common in this comment section today! I'm really glad your company has been so supportive, but brain fog is le worst :( I'm so rry you're having to go through this.
I'm so glad you've been able to get back into reading books - did you see an old episode that I did all about how to read more with chronic illness? http://natashalipman.com/how-to-read-more-when-you-live-with-chronic-illness/ - that's the blog post version from before i moved to Substack and there's also a podcast to listen to if that's easier. Lots of tips and ideas that might make it easier.
I hope your cats are looking after you, even if they're being cheeky! ;)
Yes! I did see that and listened to the podcast, it was one of the first things that made me really feel I was going to learn a lot from you! Obviously I then completely ignored all your excellent advice, continued to comfort listen to audiobooks where I knew the story and it didn’t mind if I drifted away, then a month or so ago read an entire book in a day and had bad PEM (every time I took a pacing break I just had to go back to it because I was enjoying both the book and the sense of being lost in a book again so much...I’ve been more sensible since)
Aww thank you! And oh I TOTALLY do that too :D
Hello pals!
My name is Ren and I'm outside Philadelphia, in the United States. My chronic illness journey was only explained recently (in 2018) after a particularly bad concussion. I had to do Occupational, Physical, and Speech Therapy to recover from it, but the actual injury led to a final diagnosis of PoTS and hEDS, which explain my entire childhood in all its injuries and pain. I originally trained as a classical musician playing viola, and had to drop out of a music conservatory due to repeated dislocations and fainting. I also live with anxiety, and was just diagnosed with ADHD which is a little bewildering but also makes SO MUCH sense.
I haven't been able to hold down a job, even at 28, and this frequently makes me feel like a completely ineffective human (which I know I'm not- you aren't ineffective, either!). I am still trying to finish my bachelor's degree in Art History, though I've fallen out of love with academia because the fight for a place is sometimes too much work for the limited energy I have. (Writing this out is making me realize that I may have adjusted my dreams based on the world that is not designed specifically with me in mind, and now I'm having a mini existential moment, so that's something.) Even though I'm unemployed, I'm incredibly privileged to live at home with my parents and slightly demonic cat, Ru. I would love to be able to support myself, and hold a job, and have a home of my own, and, and, and... so my goal is to eventually work for an LGBTQ+ youth mental health support website based in LA, since it is remote and has brilliant healthcare (yay USA...). Point being, I have many goals, and not much energy. I think that's the thing I wish I knew about chronic illness growing up: it's okay to feel fatigue All The Time and take things at your own pace. The "pace" is not calculated for anyone with Disabilities or chronic health issues, so of COURSE it would not fit everyone!
Anyway, I spend my days consuming audiobooks and knitting when the energy allows. I am currently working on a sweater I started in 2020 and abandoned with just a sleeve left. I have an instagram which I use to show off my fiber projects (I also dye wool and briefly had a very mini business surrounding that) and use it just to process the whole being-human-right-now thing. If anyone feels like connecting over there, here's my link :) https://www.instagram.com/chronicallyknitting/
Thank you to Natasha for creating such a supportive community where I can see I am not alone. Sending love and spoons to you all!
Hi Ren,
So lovely to have you here and thank you so much for sharing your story with us!
First of all, can I just say that your knitting is beautiful - what a lovely project to slowly work on. What kind of audiobooks do you enjoy listening to while you knit?
I cannot tell you the number of people I know who have fallen out of love with academia - chronically ill, yes, but also totally healthy people who were completely burnt out by it (so navigating it while sick is a whole other bloody layer!) I really hope you're able to work for that amazing sounding website! I think your message about taking things at your own pace is so important. Over the years I've started and stopped so many things. I learned not to view that as a failure, I learned and grew every time. Finding ways to meet your goals, readjust your goals, or have goals at all with chronic health conditions can be a real challenge. All we can do is our best on any given day.
Thank you again for being here!
Hello Ren! I’m also in Philadelphia (West Philly, near UPenn) so I had to say hello! Your knitting is truly amazing! Bea
Hi Natasha & everyone else,
This is a great idea!
I'm Sophie, I live in Geneva (Switzerland) and Porto (Portugal). I am an Environmental Scientist by training and spent 5 years working in the aviation industry helping airlines tackle different environmental problems.
I was diagnosed with Hypermobility Ehlers Danlos Syndrome in 2019 and suffered greatly with chronic pain in my lower legs. I had a hip surgery this year which has provided a lot of relief and after being made redundant due to my long sick leave, I've decided to set up my own business. I've loved listening to the podcasts, particularly those around pacing as this is an area I am terrible at (aren't we all?!)!
I am upcycling bottles (gin, champagne, wine etc.) into soap dispensers, candles and more. I'm in the process of setting it up so website, shop etc. to come soon. I will eventually expand to include bespoke furniture using wine barrels and more.
Hi Sophie, lovely to meet you! And thank you for your kind words about the podcast - I'm so glad I'm not the only one that's so terrible at pacing!
I'm really glad to hear your hip surgery has given you a lot of relief from your pain! Leg stuff is awful - my knees have been one of my biggest issues since I was a child. How are you finding setting up your own business and balancing the pacing with all of that? When you work for yourself (and I guess when you work for someone else (😅) it can be so easy to overdo it!
Thanks so much for being here! Can you share a link on this thread when your website is live - I'd love to be able to see what you're making!
I would like to say I'm managing the pacing from the business perspective fine, but that is because I have a 5-month old Retriever puppy and a 5-bedroom house to renovate which distract me quite a lot from the business haha. So really, I am not doing a very good job at pacing at all, I probably need to re-listen to the podcasts! I do try and use the puppy for pacing i.e. when she is sleeping she reminds me to do non-physical activities etc.
I will definitely share a link when the website is live, thanks for asking!
I'm sorry to hear about your knees, I'm guessing you've had a lifetime's worth of physio like I have?
I love the idea of puppy pacing! Also my Osteopath literally told me to listen to my own podcast today to remind myself about pacing, so I'm right there with you :D
Yeah, my knee first came out when I was very very young and I spent a huge amount of time in physio growing up. Finally got a PT (not a physio) who is an injury prevention specialist and she changed everything for me. Still terrified of my knees though - wrote a whole essay about trying to learn to feel safe with them - doing much better!
Oops haha. Maybe I'll try listening to the podcast in my sleep to really drill the pacing in!
I know how you feel about being scared, I'm always worried I'm going to have an accident when things start to improve. I'm also unintentionally doing puppy PT sessions where she pushes me to make my isometric exercises more challenging - they're a lot less predictable than my physio's nudges. Your PT sounds great and far more conventional!
Pacing is so hard!! I hear you on that. Looking forward to seeing some of your artwork.
I can't wait to see your shop! I adore upcycled bottles, so expect a sale as soon as you open for business. :D
Thank you Beth! I will share as soon as it is up and ready, I'm excited to hear that you are interested x
Hello! I’m Lucy, a designer and Natasha’s ancient friend! I have mild hypermobility with a penchant for overdoing it, so I have greatly benefitted from Natasha yelling at me to pace over the years haha <3
Since Natasha is such a good writer her internetting has been vital to me to know in great detail how I can support her as a friend in her life.
I also have to say how much she helped me when I was recovering from Covid. The long Covid overlap with chronic illness appears to be uncanny and I’m hoping the chronic illness community will be better valued in future!!
Hello Ancient Friend! Lol I just remembered when you went to the GP and he was like, "you have mild hypermobility. I have a patient who has a more..." "Yes, I know, it's Natasha" :D
I'm so glad that you've been able to learn from my thingies and benefitted many a-time from my wagging finger.
Also, thanks for being the best of pals a tired tashy could ever want <3
Ahahaha poor bloke was bound by confidentiality and struggling to hold it in!
And any time homie, it is YOU who is the best. Thank you for decades of gentle finger wagging! Xxx
Ahahahaha really?!
Yeup! He kept trying to ignore me saying that I knew you and be all profesh haha - ‘but that’s literally Natasha tho…’ poor guy XD
lollll
Hi, I'm Amelia! I'm from New Zealand. So wonderful that space has been created for everyone to share, it's so interesting how much parallel there is within everyone's experiences. I have been following Natasha on instagram for years, I actually can't remember when I started. It feels like her content has been apart of my life for so long. It was there for me when I really needed another perspective to cut through. Thank you so much Natasha, I've felt so seen as a fellow perfectionistic writer! This post is also going to be quite long!
I was diagnosed with hEDS in 2019, looking back over my childhood and the many injuries, appointments and pain it makes sense. But it was never connected then, and I was the perfect patient. I would do all the exercises, recover from my injuries and bound back into life, compensating for what I felt I had missed out on. When I was 14 I got glandular fever, which triggered me to become very ill. I had severe pain in every bone in my body, horrible fatigue and many other symptoms. No doctors knew what was wrong with me. Eventually I was given a vague diagnoses of post-viral fatigue/post-viral pain syndrome and POTS. The sense from medical professionals was that I was young and would overtime get better. I took on all of the self management while I was still basically a child and put so much of my energy into pushing through and getting better. I grew up very quickly, strangely at this time I also started my own business teaching drama to children and working as a nanny. I worked for most of my teen years, constantly pushing myself beyond my limits. I was also training as an actor and auditioning professionally. Looking back, I should have just allowed myself to rest and be young. I didn't yet have a language of disability and acceptance. I felt I needed to be 'fixed' and often denied the reality of my symptoms. Both my siblings struggled with their physical and mental health, EDS was floated as a possibility because my brother was diagnosed. But I was in denial, I didn't believe I was 'bad enough' to have EDS. In 2018 I began a degree in screenwriting and directing. This was an intense practical program, and I studied full time. The film industry is inherently ablest due to its industrialised nature, and at times my program was a challenging environment. My symptoms began impacting my mobility more, and I began to see things differently. At uni, I discovered disability theory and ended up writing many essays about disability representation in film, media and narrative. It wasn't until the end of my second year that I was diagnosed with EDS and I probably didn't have space to fully process it at the time. But my understanding of the rights model of disability did help me to began to accept disability has part of my identity and how I see the world.
My classes took place in the buildings of an old psychiatric Hospital, this really struck me and sparked an interest in research the hidden histories of disability and the impacts of institutionalisation. My graduate short film Hysteria was a narrative exploration of that history and I was able to film on location. You can watch it here https://vimeo.com/484270788 the password is hysteriafilm
By the time I made this film (I made others) I was more aware of my access needs and although I definitely still pushed myself, I am proud that I explored what accessible/sustainable practice could like like within the film industry. I ended up graduating as senior scholar, which meant a lot to me, as a teenager with a lot of brain fog, I'd never written an essay before going to uni.
In New Zealand we've had long strict lockdowns during the pandemic, which actually forced me to slow down and confront things. My whole life I felt too delicate, too soft, too fragile in my physicality, so I hardened, sharpened my interiority to compensate. Not allowing myself the emotionality of my experience. Ten years of emotions hit me all at once, and I began psychotherapy. It has been one of the best things I've ever done. A lot of this was unpacking the complex dynamic of a family shaped by chronic illness. My brother, sister and I all have hEDS. They both lived with OCD/ADHD and complex mental health. I always filled the role of the 'capable and functional one'. Proactive, when they were passive. I think the roles we develop to cope with chronic illness should be discussed more.
I currently work for a small non-profit leading the development of an integrative support service for people with chronic illness. This service will be entirely free and focus on a lot of what has come up in the podcast and these comments. The softer aspects, the secondary suffering and the complexity that comes with living with conditions like this. So others don't need to feel as alone as I did when I was 14. I remember in a podcast episode, Natasha mentioned the dream of place that people with chronic illness could come for rest and relaxation, to be supported in the isolation of self-management. It's incredible that I have the privilege to create something like that.
I still have writing/film projects in development, but like many have said I struggle with the fact that I want to be so many things. I am drafting a feature film version of Hysteria and exploring the possibility of writing a creative non-fiction memoir that can link my experience of my body to disability theory, history and the pandemic. But I am re-exploring my expectations on output and that it could be okay if I spend years on these things. That perhaps I don't have to approach my creative practice in an 'industry' way.
Hi Amelia,
Thanks so much for being here and for your support on Instagram over the years. It has helped me so much to know I'm not alone with my perfectionistic vibes too :D
Thank you so much for sharing your story, and for sharing your film - I'm looking forward to watching it today! And also can I just say: " I always filled the role of the 'capable and functional one'. Proactive, when they were passive. I think the roles we develop to cope with chronic illness should be discussed more." - bloody hell this is me too - I've been thinking a lot about these roles, what does it come down to? Personality? When people have access to the same level of care and support - what is the thing that makes the difference when it comes to proactivity?
The non-profit sounds absolutely brilliant - can you please share some more information about it please? I'd love to follow along.
It's so difficult when thinking about trying to work in creative industries and how we conceptualise "output" - it's something I struggle with a lot too. Writing for me is something I love to do, but it's also my job. So at what point do I inevitably start pushing myself?
Thanks again for being here, Amelia!
Hi Natasha, thanks for your response! Yes, the roles of coping//adapting are so interesting to me. I think it must be partially personality, but definitely family or group dynamics also come into to it. Something my therapist said to me was that being proactive and constantly busy, even if it's being busy with 'health management' can also be a form of avoidance. It seems that people to tend to fall into either extreme though, so I am interested in why that is and what actually shapes it. Why some people keep pushing, while others get so paralysed . Could be an interesting podcast topic?
We are in the process of updating a new website, but once it's launched i'll let you know! The space you are creating for the rest room is so helpful for shaping what this service could like and what the needs of our community are. It's also an opportunity for me to build a job that suits me and my needs.
It's definitely such a challenge, especially because of what is normalised in creative industries. It's so hard to go against that. I am at a point of questioning if there is a space for me within film, which is why I'm exploring other forms of writing. But I already have a full time job, so I have to be careful not to put able-bodied expectations on myself.
Ooh that is a very interesting idea - thank you. And hmmm never thought about it as a form of avoidance...will noodle away on that too!
Oh wow - that's so lovely to hear, thank you. I really can't wait to see what you're building!
I'm Beth and I've had ME/CFS for the past 20 years, dysautonomia for probably longer than that, and endometriosis for the past 30 years. Of course, diagnosis for those didn't happen until 5-8 years ago. My ME/CFS was cyclical and manageable, though frustrating, for a very long time, but in early 2021 I had a bad bout of COVID-19 and since then my ME/CFS symptoms have been constant (and the cognitive dysfunction bits have been worsening to the point of fully disabling me). I discovered this podcast a few months ago, thanks to a friend with ME/CFS, and it's been a godsend. In particular, I wish someone had told me how to effectively pace things years ago. I've been very boom and bust, and didn't realize I could alternate between primarily physical, primarily cognitive, and primarily rest activities and actually enjoy relatively stable (low) stamina. Had I known that before, maybe I would've lasted longer before being burned down to the ground by this illness and corporate America. :D
I don't really feel I can claim any of the productive, creative things I used to be anymore (I used to be a novelist, a seamstress, a cosplayer, an historical reenactment gal, a hobby chef/baker, an avid reader, a dabbler in hobbies, a tech writer/editor, and a small business owner with a penchant for volunteerism and environmental activism). I suppose my one interesting thing now is that I'm raising and training a medical alert service dog (for chronic migraine and dysautonomia attacks). And I try to alleviate isolation by participating in play-by-mail LARPs and Discord communities.
Hi Beth,
Thanks so much for being here and for sharing your experience - and I'm so sorry you've been struggling. The effective pacing by activity alternating was HUGE for me - I wish I knew this too! How does play-by-mail LARPing work!?
Thanks! Basically you make a character and then exchange letters in character, with other players. Like a game version of being pen pals, though usually there are game-wide plots to give you letter topics to write about. Through a Regency one, I got into fountain pens (which require *much* less pressure to write with, so I'm able to hand-write things with less pain) and it's a nice, slow activity that helps foster a sense of inclusion. Honestly, finding slow, go-at-your-own-pace, inexpensive/free hobbies has been difficult, but necessary for me to retain any sanity. :D
Oh my gosh honestly that sounds so fun!
Hi Beth, I wanted to say that I was also curious about play-by-mail LARPs and thank you for your explanation- that sounds wonderful ! I'm a big fan of writing letters but can worry about what to say, so that sounds fabulous :)) I agree with fountain pens too- they're much easier on my hand joints and I get a bit of joy from writing with one and feeling very fancy
I hope you get a chance to join one someday! I'm currently in one called Mosswood, which is set in a sort of Wind in the Willows fantastical setting, very whimsical and sweet and low-stress (everyone playing anthropomorphic animals), so I can recommend that. :D And yay for more fountain pen fans! Yes- they do make you feel fancy, don't they? I also feel artistic, even though I'm not, when I write with a really pretty fountain pen ink.
Hi, I'm Lucas ! I'm really appreciative of this space as well as everyone sharing some of their stories and how they've ended up here. I've found The Rest Room very useful both to learn from and to feel validated by- as a chronically ill medical student who was always know for being busy, it seems my brain's natural resting place is that I am making up all ailments, or could be fine if I just tried harder :(
I have chronic fatigue diagnosed as long covid which means I can feel thankful for the increased visibility of long-covid like conditions (which led to me receiving any support at all!) but can also feel my experience is minimised by those focussing solely on long-covid. (Not that long-COVID doesn't deserve attention and support!)
I'm also hypermobile (HSD if that's a thing still?) and have POTS like symptoms but no diagnosis. I wrestle with pacing a lot and definitely get caught in boom and bust cycles, but have made some improvements in the last year or so.
When I'm managing okay I also like to knit, crochet, play music and write poetry - I definitely agree with those mentioning the power of creative outputs!
Hi Lucas,
Thanks so much for your kind words and for being here!
I think HSD is still a thing (for now anyway!) and that combination is super common in the comment section here today! I wrestle with pacing a lot too and still struggle with those boom and bust cycles, so you're definitely not alone. How do you find medical school with your health? Are they supportive?
Yes, I've seen lots of people with the cfs and hypermobility combo about :) I sometimes wonder if there may be a link via neurodiversity but never quite have the spoons to adequately wade through the papers!
In the last year I've been on a different (related) degree which was much more similar to a 'standard' uni arts degree with fewer contact hours and much more flexibility (but still intense and difficult!) and adjusting back to long days in hospital is quite hard, especially with attendance requirements and very variable schedules which complicate pacing.
I think the main thing for me is the harmful attitudes I encounter in medical settings and can internalise. I am still very hesitant to be visibly disabled or ill around medical students/doctors that are teaching me, and can find that people feel more entitled to medical/personal information than usual. Medical school can be okay, but I have found it quite hard to have fluctuating conditions understood, or to explain that whilst I might be able to do something it may have knock on consequences in the rest of my time or health, like managing to meet some uni requirements but then having to spend the rest of my time in bed and without energy to cook or eat etc.
Overall it's a mixed bag but I'm gradually finding pockets of understanding and shared experience, and hope to continue this. If I have the spoons. One day!
One day!
Can totally relate to the whole 'making it up' thing. Sometimes it is so tempting just to push through and think we can do things if we try hard enough. When i've done a more effortful activity, i often question why i've avoided it for so long... then the PEM hits to remind me why!
Yes! I think I can have quite a variable severity of fatigue too, which compounds the feeling of doubt about 'fakery'. And I definitely feel you on questioning the avoidance of activities - I recently had covid and whilst I was quite ill I dreamt and dreamt of running, completely removed from my reality where that was a) never a good idea and b) completely impossible for me at that point. I know I like to plan things, so i think it can be a bit of a coping mechanism to plan and think about all the activities I'd like to do, or how hard I'd like to work at a physical thing - I often need a reminder that my baseline and what's hard work for me is different to many other people
I totally identify with the imposter syndrome! My thoughts range from “you’re a total malingerer” to “if you just did more research you’d find a cure for this disabling illness.” It’s tough!
I miss running! So tempting to try to exercise our way out (terrible idea). I've tried to think of rest as training, even though it is so counter intuitive to what we've learnt our whole lives. Have you ever tried an e-bike at all?
Ooh I haven't thought about rest like that - I try to stay away from ideas of rest being productive (because it lets you work more) because of how it can reinforce an idea that rest is only valid if it leads to more work, but I think rest as personalised training feels quite different to that and is definitely something for me to mull over - thank you!
And I haven't ever tried one! There are cycle hire schemes around the city and some of them are electric - I want to try them out and there's a discount on at the moment too. How about you?
Oh I definitely need to think about that as personalised training too - I am SO bloody bad at letting myself rest!
The local environmental group where I live lends out ebikes to encourage people to switch from driving to cycling, so managed to borrow one for a couple of months. It's a bit different from cycling a normal bike but just being able to get out and about in nature and feel the wind in my hair made a huge difference - although had to be careful not to push too hard or go too far. We've also got a hire scheme and it's a great way to do activities with friends as everyone is on the same level. Would highly recommend!
Hi! I am Hollis. I live in Anchorage, Alaska and I am 34. I was diagnosed with dysautonomia in 2015. Until that point, I had lived with pain, digestive issues, circulatory issues, and a variety of other 'weird' things that as a high achieving person who loved learning and making art I had powered through. I moved to Alaska in 2016 to be outside-- my body always felt best (and still does) when moving and I never stopped going because of the crashes I would hit. But, that meant persistent pain, and autonomic symptoms. I continued to power through until a series of viral and bacterial infections in 2020 and 2021 set me into a terrible spiral. This led to some new diagnoses: hEDS, chronic fatigue, complex regional pain syndrome, cervical distonia, amongst other things, and suspected MCAS. I deal with persistent pain, disgestive issues, orthostatic intolerance, joint slips, fatigue, brain fog... y'all know-- all the things. I have pushed through many of these things at lower levels for years, but recent escalation means a whole new way of being. The new baseline is much, much lower than earlier in my life. I am no longer able to 'power through' and upright activities (and thus my job managing a staff of 10 and 1 million dollars as the head of Education at the Anchorage Museum ) are no longer accessible to me. I am, after 7 years of diagnosed chronic illness, still learning to live with it (generously) and not inspite of it (fighting it). Day to day I am sometimes full of grief, sometimes full of hope, sometimes full of rage, sometimes exquisitely happy finding pleasure in less. I am still working but on reduced hours as I try to chart my path. While not able to wrap their heads around my shift from someone in cute heels managing 13 hour days to someone who cannot stand, my job has been as accommodating as possible, though perhaps has a long way to go in understanding access. My partner is a doctor, which can be helpful, but as he said to me-- he never learned about dysautonomia in med school, and we're learning, and have been, together. He's incredibly supportive, but as a doctor always wants to fix it-- when sometimes I just need someone to listen (as chronic illness is no miracle pill fix, no matter how many I try I have found!)
I make textiles, write poems, make music cook food. You can see my art here: http://www.hollismickey.com/ and listen here: https://shollismickey.bandcamp.com/ I really have been wrestling with malabsorption, early satiety, slow motility, and nausea which has caused me to dramatically loose weight and challenged dramatically my relationship to food, but I do write about food: https://ediblealaska.ediblecommunities.com/s-hollis-mickey I am hoping to launch a patreon this fall of food zines. I have an instagram where I hide behind ingredients and sometimes talk about making invisible disability more visible: https://www.instagram.com/apronon/ I really have been challenged to find support networks, so this podcast has been a place of solace, and I am eager to connect with others who listen.
Thank you for creating that space.
Hi Hollis,
Alaska, wow! Thank you so much for your kind words and thank you for being here. I recognise you from Instagram! Hi :)
Thank you so much for sharing your experiences - I'm so glad you've got someone to support you but it's not a surprise he didn't learn about dysautonomia in med school1 I'm looking forward to digging into the links you shared!
Honestly, as someone with 20 years of chronic illness under my belt, the process of grief and acceptance feels like a journey with no end. I'm so sorry to hear about your digestive issues, and thanks for sharing your writings about your changing relationship to food! I'm digging into that content today.
Thank you, Beth! I am 5'3" and have dropped to barely holding 80lbs, which as someone who loves to eat and make food, is hard. Especially as all food exacerbates my autonomic symptoms. And, being too thin leads to lots of assumptions about my mental health when their are physiological reasons for what's happening-- so much assumption about eating disorder and body image issues when I just desperately want to eat and feel strong in my body. Finding others who have been on the journey a long time means so much. Feel free to DM!
That sounds terrifying! And so very frustrating. People do love to judge, don't they? (I suffer from disordered eating, but because I'm overweight there's an assumption in the other direction). I'm loving your shared articles on foraging and veg-based recipes (that rose hip and cranberry ketchup sounds delightful, and I love the idea of sorrel frosting)! Thanks for sharing your skill and creativity there, even though you're struggling personally with your body's treatment of food.
Beth: I appreciate your kind words and support. It’s exhausting to have to defend your body and your symptoms against assumptions. I am in such deep solidarity with you!! Thank YOU for the work you do on behalf of your own well-being, which brings wellness to others. That’s certainly what I hope we can each do: support others in a sustainable way, while pacing so we can care for ourselves.
Hi, I’m Colin, friend of the podcast and sometime collaborator. I’ve really enjoyed seeing this project develop over the years! I’ve found the deep dives into topics like pacing extraordinarily helpful. Really, no one else is doing what you do and I think the size and engagement of this community is a testament to that. I've been learning Yiddish along with Natasha for about 18 months now! Otherwise, these days I'm mainly working on pop linguistics stuff over on youtube (for anyone interested, it's at https://youtube.com/colingorrie ) Both of these things are marathons rather than sprints, so I’ve been trying to keep your pacing advice in mind as I go!
Thanks Colin! I've learned so much from you when it comes to language learning (and honestly, who knew you could learn a language with brain fog!) and I HIGHLY recommend his language learning and linguistics content for anyone who's interested!
Hello everyone,
I really identify with bits of everyone’s stories, which is just so comforting.
I’m Bea - my dx are POTS/dysautonomia, post-viral fatigue (ie CFS), migraine, TMJ, sleep disorder, and myalgia. I *just* had Covid and am paying attention to how recovery is going.
I’ve only been super ill for about 18 months, so I’m still figuring out my narrative. I’ve always had (what I now know were) mild POTS symptoms but last year they became extreme, accompanied by fatigue, migraines, pins and needles, etc.
I’m a Brit in the USA, having moved here for my partner in 2011. I was very active physically (running, swimming, looong walks); professionally (full-time writing job at University of Pennsylvania, freelance writer for international art magazines, creative grants recipient); and academically (working on a grad degree in ancient languages and art history part time). I have a wonderful group of close friends in Philadelphia and in the UK, and a dog and a cat. I feel proud of myself to have built such a great life in my chosen country, but I also feel so sad writing this because so much of it has been stripped away by POTS/CFS. I alternate between feeling angry, accepting, and beaten at the moment.
My initial reaction to being ill was to work harder and do more. I wrote a paper on emotional orientation in the epic of Gilgamesh while recovering from my awful tilt table experience, and had a job interview wearing my holter heart monitor disguised under an elegant turtleneck. I got a new job writing speeches for the director of a brilliant museum, and powered through with a lot of (prescribed) stimulant meds. I just worked and slept and went to PT/OT, and my poor partner did his best to get me to slow down.
In January of this year, I couldn’t keep up the madness any longer. I was bed bound for a few weeks in a huge crash, and since then, I’ve had awful brain fog on top of everything else. I valiantly tried to keep working even when my partner and doctor warned against it and just got more ill and more behind in my work. On March 18, I finally gave in and went on medical leave. I feel glad that I decided to take care of myself, but also I still have that lingering sense of shame of being unproductive and not valuable because so much of my self-worth is tied to work.
Since then, I’ve come to realize that I won’t be going back to work full time at the moment. This is so hard to accept. I’ve been able to vomit out this post, but generally my ability to write is limited. My brain fog can get so bad that I can’t follow a recipe, I can’t remember why I opened a page, I can’t remember how to plug a phone charger into my phone, and once I got terrified as I momentarily forgot how to get home while walking my dog a couple of blocks. My cognitive difficulties were so bad once at a Dr apt that she immediately scheduled me for an MRI to look for tumor or dementia. …but it’s just the POTS and the fatigue.
On the positive side, being off work has allowed me to explore making art when I have the energy (will find a way to share photos). I’ve learned to listen to my body. I’ve learned what an amazing group of friends I have, and how kind my partner is. I’m excited as I finally found an OT who understands POTS (why did I get assigned a hand specialist at first who had to Google POTS?!?) — and I just got into a POTS study at Vanderbilt Autonomics Research Center.
I’m so so grateful for Natasha’s work — I’ve learned more from your expert interviews and life experience than I have from any doctor or OT so far. You have helped me start to “self manage” (oh that phrase).
Given my energy limitations, my plan to fix my old freelance website is on the back burner. However, you can see some of my art writing on it (just beware not all the links work): https://beahh.net/writing
So happy that this is a potential community.
Bea xo
Hi Bea,
Thanks so much for being here, for your support, and for sharing your story! Sending all the best of luck for your Covid recovery. Oh, and thank you so much for the incredibly kind words about my work!
You know the biggest thing that has been pulled out of most of these comments on the thread today has been people talking about how much they pushed themselves until they couldn't anymore. It's so sad. And those feelings you talk about, anger, acceptance and beaten is something I can relate to a lot. Even though I've been living with this for a long time, I go through phases where just sometimes it still gets on top of me.
I'm looking forward to reading some of your art writing!
Hi Bea, what you said about sense of self-worth being tied to work and feeling shame for not being able to has resonated so strongly with me! I felt exactly the same, right down to deciding that working harder instead of slowing down once the illness started to bite was somehow the right way to approach things. I feel like I’m in a bit of limbo now, I don’t feel quite so strongly that I only have value in the world if I can work/volunteer/be of use in some way, but I’ve also not totally broken free from it. As you say, it’s so comforting to know others feel the same way.
Absolutely. I've been thinking about this a lot recently. My doctor told me I need to take time to convalesce and my mum yelled at me for pushing myself too much the other day. And it's one of those things where it's like...difficult...because I understand not pushing myself but also just I love doing stuff, and I know a lot of that is tied up to how long I spent not being able to do things, but at the same time, it's ok to want to do stuff and find it hard when you can't. Not sure if that makes sense, but it's been something I've been thinking about a lot!
Kelly and Natasha, my partner yells at me (in a nice supportive way haha) for doing too much. Kelly, I totally get that feeling of being in limbo-- and, Natasha, I too just love doing stuff. In my teens and 20s, I had severe OCD and was recovering from a sexual assault, both of which limited my ability to participate in life. And so in my 30s (now) I felt like I had so much lost time to make up, and I threw myself wholeheartedly into lots of wonderful activities.
So having a chronic illness brings up that feeling of helplessness and lack of control that I felt so much as a younger person. So then I want to do loads to have a sense of agency, and then crash ... etc etc.
I feel like the sensible answer is that pacing and slowing down will help you do more, and more sustainably, in the longer term. But it’s so hard! I definitely get into something (listening to a book, puppy training, macrame, folding laundry...) and then forget to take breaks. It’s nice that none of us are perfect!
Amen
All of this is so relatable - I'm glad it's not just me! Society seems so focused on productive outputs, and it can feel like you have to work to prove you are a valuable member of society. Definitely felt like that when I was signed off work. Even when asked what you did at the weekend, it's not really socially acceptable to say nothing - even if that was what was best for you in terms of health.
Yeah, when I wasn't working when I was younger I literally didn't know what to say and I just felt like shit every single time.
There's ALSO the thing where if I'm not distracting myself by doing something, then I'm acutely aware of the pain and discomfort in my body and basically have no escape from that. So sometimes pushing myself/overdoing it feels like the lesser of two evils (maybe that's instant gratification talking, but still).
Yes you’re so right Beth!
Hi, Bea! I quit work in December (they were unwilling to make any accommodations) and I also have struggled with the sense of shame, being a grown professional adult with a degree, 20 years' work experience under my belt, and having been really ambitious and effective in my field to now being unable to parse auditory language, struggling with reading comprehension, having little recall ability, etc. It's rough, and I wish I had a magic fix to negate those unhelpful feelings, but I can at least tell you that you're not alone there. And funnily enough, my doc also sent me for a brain MRI when my cognitive function started rapidly declining (sad to say, I was hoping for some physical representation to explain the issues but nope). My doc is starting me on memantin, which is used for Alzheimer's patients, in the hopes that it will knock some of that cognitive dysfunction down. I hope your OT is able to really help you make progress in managing your symptoms to a place you're at peace with.
Hello Natasha
Thank you for The Rest Room and for this lovely social get together. So great reading people’s stories. I am Jane and I live in Australia. I have been enjoying your informative, well presented and friendly podcasts and have been surprised how many times your topics have timed in well with my own queries and wonderings. I also like how you express the difficulties that come with pacing, managing new hope and the complexity of real-life stuff. For me, you have created something valuable in that space between what is said/not said at a doctor’s clinic and how life happens.
I have ME/CFS with Orthostatic Intolerance, Multiple Chemical Sensitivity and fibromyalgia, plus hypermobility and, more recently, a diagnosis of Functional Neurological Disorder plus the effects of a past traumatic head injury and some other stuff.
I previously worked in Biophysics research and taught Pilates in my own small business. I was single parenting with two young kids ME/CFS began. Now life is slower and my kids are grown and they try to help me -tho really they always did. I am not working due to health circs, but I am gradually developing a series of online sessions “Gentle Movement, Meditation and Management Strategies for living with ME/CFS”. I am excited about this project (although trying to pace how I work on it – I see the irony there) as it is in conjunction with an OT (who has ME/CFS), a meditation teacher and a physio with hypermobility awareness/Feldenkrais teacher. I would like to do postgraduate study but not sure if this is feasible given the unpredictability and changeability of my symptoms.
I am trying (on the good weeks) to play Petanque – my version of sport while sitting down a lot, chatting and doing a little bit of standing and aiming.
Hi Jane!
Hello from London, thanks so much for being here and for your incredibly kind words about the podcast! That's exactly where I wanted it to sit, so thank you.
A second biophysicist here! Your online series sound lovely - good luck with building that. I'm sure they'll help a lot of people. And yes, totally get the irony of pacing things like this - it's something I come up against a lot.
Not heard of Petanque before, but just googled and it looks like a great way of getting some movement and socialising in!
That sounds like such an interesting project! Pilates was the most effective thing I had to manage my hypermobility (not that I knew that’s what it was at the time) and I’d love to be able to get back to it but also have ME/CFS and am very limited in what I can do these days, what you’re working on sounds really interesting
Hi Kelly and thank you so much for your positive response to the idea. It means a lot while I am in the development stage. Hypermobility and ME/CFS co-occur quite a lot so am hoping this could keep the benefits that pilates can bring but also tone it down to a level that minimises PEM triggers.
Seconding this! Before my illness worsened, pilates was the only exercise I could do (well, 3x/week) that didn't knock me flat with PEM. And it helped me feel stronger and better, even if I wasn't making visible progress. I miss it, and I'm excited to see your series when it comes out, given you have that background.
Hi Beth I really appreciate your kind words and enthusiasm. I really hope to help people move again and build awareness of how that personally best works for them. It will be fabulous to have your interest when it is out thank you.
Hi, my name is Rachel! Thank you for creating this - online communities have definitely made me feel less alone this year and provided invaluable information about pacing and managing expectations. Just before New Year i fell ill with fatigue and a headache, and have suffered from fatigue and brain fog ever since, which is about 7 months. For about three months I was too ill to work, but am now working reduced hours in my job as a speech and language therapist. In a way it’s almost harder now as people see me out and about and assume I’m well, whereas most evenings and weekends I’m resting on the sofa, and having to plan out everything in detail to ensure I get enough rest. I also don’t have a diagnosis to help explain it to them, although I know that’s not the answer to everything!
I’ve been trying to figure out how to actually live with my symptoms rather than waiting to get better. I used to do a lot of outdoor sports so I’m trying to work out how to still enjoy the outdoors and stay within my energy limits. I’m also learning to sew as something I have always wanted to learn but never quite found the time for! Looking forward to connecting with other people :)
Hi Rachel,
So nice to meet you and thank you for being here! It's amazing that you're already learning how to stay within your energy limits whilst finding ways to enjoy the things that are important to you - that's a lesson many of us (myself included!!!) take years and years to learn!
It is very definitely a learning curve and I by no means have it nailed! It's also only because lots of people including yourself have spent time sharing information about pacing that I've been able to do it - so thank you :)
Aww thank you!
Learning new limits especially when dynamic is so hard. Sending solidarity in our ongoing listening and learning processes!
Absolutely - it's ten times harder when the goalposts constantly move, and everything interacts with each other. Also being objective about what we are able to do when it conflicts with what we want to do
Hi everyone, I got my diagnosis about 3 years ago, of hypermobility, this was due to a friend who has it also and recognised it in me. So I went to the doctors and finally got diagnosed, but the pain i was getting and still get I couldn't get a doctor to tell me why, I just getting sent off to physio, which I tried to do but felt fatigued even more so. My friend I've known since senior school said I had E.D.S , I told I thought I had as I had done a lot of research . I was frustrated with my doctors I just carried on regardless working as carer with the elderly, pain was getting worse , still I carried on cos the usual thing , pay bills and keep a roof over your head. I have worked for years as carer, support worker and s[special needs support worker. I started this line of work in 2004. With pain and fatigue I still kept working , but ...... I had an appointment at the doctors for a smear test, I had no money so had to walk there. When I arrived at the doctors to see the nurse , I was in a lot of pain, ankles swollen, knees swollen and feet burning , back, neck and hip pain. I sat with the nurse and started telling how my body was > I even showed her my wonky looking (inside out elbows) by tht time I was crying so much , she asked what I did for a living , and she no wonder why you are in so much pain !! She also said it sounds like I have what her daughter has , I said in my mind E.D.S and she did. She told me she'll go and speak to my doctor straight away , I felt so relieved , and even more so when she came back to her office and told me my doctor will call me later today. The doctor called me and I went on sick leave , during that time I had to give my work place my sick notes , which I happily did, I went for a hospital appointment, was checked over by a nurse , she said my knees are too far back and checked my elbows, asked me to do few movements, which I did. She then made an hospital appointment , I was I was very disheartened and pissed off !! I phoned my doctor, and let her know. Finally I got a letter from the hospital that I did have H.E.D.S level 3. But No hospital has ever to bother to check me out , no mmri scans or X-rays, which I cant understand why. After that I went to a work capability assessment and got asked a load of questions . About a month later I finally received a letter saying I am no longer fit for work and I no longer have to look for a work or give them any sick notes. So now I'm on universal credit and Employment support allowance and I had a video consultation with P.I.P (personal independent payment), hopefully I'll get that too. I still keep my self busy , and now I know that I can rest up and not worry about working in a job that made my condition worse . I am now 51 , so you can imagine the relief I felt ,when finally got my diagnosis that I was born with.
Oh wow, I'm so glad to hear you've finally got that relief of a diagnosis and recognition. What a wonderful nurse - it really can be one person that starts to turn things around. But I'm so sorry to hear of everything you've been through. Thank you so much for sharing your story, and I hope you're able to get the rest you deserve now.
I’m Steph. Medically retired teacher and fundraising/Comms manager for learning disabilities and mental health charity.
I was diagnosed with Ehlers Danlos Syndrome aged 38 after a lifetime of wondering what on Earth was wrong with me.
Also have Endometriosis, PCOS, Gastroparesis, Slow Colon transit, multiple prolapse, CFS, NAFL, GERD, Asthma, Osteoarthritis, Osteoporosis, OSA, MCAS, Fibromyalgia, D&A, intertrigo, Hyper Lipidaemia, possible POTS / a tachycardia problem, cervical stenosis the list feels endless I’m sure there are things I’m forgetting.
I find the best ‘trick’ is learning as much as possible about what your body is doing so you can not only be your best advocate but also how best to help yourself especially where diet is concerned.
Keep ongoing food/meds/symptoms diary and include your fluid intake, weather conditions, stresses, activity and medication so you can spot patterns in your symptoms. What causes flares, what helps etc. it also means you can take it to your appointments because it really is beneficial for those treating you. It seems obvious for Gastro issues but you’d be surprised what else it can help with too.
I was first tipped off by a pre op nurse about EDS. Now I volunteer for Nai’s House a mental health charity for young people under 30
Hi Steph, thanks so much for being here and for sharing your story. I can't believe how long it takes people to get diagnosed with EDS. My old physio told me she knew some people who were diagnosed in their 60s. I've only heard this anecdotally, but I've heard of a lot of people getting dx only after getting Long Covid and hearing about it in clinics.
Thanks for sharing what helps you, and I'm so glad your nurse tipped you off about EDS. Nai's house looks like they do great work!
You’re right it’s shocking how long it can take.
Nai’s House are amazing! Their approach to mental health and suicide prevention is so refreshing. Very holistic and trauma focused.
I’m also creating a sign posting project to give people ideas on how and where to get help for SEN, mental health, cater support and various other things too but it’s not ready yet x
That's great!
Hi there. I have HEDS and I was not diagnosed until 23 , and since then nothing else has changed. My condition is worsening and the ligament reconstruction surgery I had has failed. I’m super frustrated and in a lot of pain.
I'm so sorry to hear that :(
Hello, I'm Lior. Brain foggy so bullet points :)
- ME/CFS since 2016. Mostly housebound. Varied btwn moderate to severe to moderate-severe.
- Service designer, entrepreneur, management consultant, professional events. Do-gooder, thinker & doer, visionary (LOL can hardly believe that was me). Haven't been able to work since 2017. Loved my career - made a difference, built community of special creative kind people.
- learning ukulele. Have filled out 18 and a quarter sketchbook/journals in the last 6 years. Make zines. One day hope to make book from best bits of sk/ournals. Will probably be something deep about chronic illness and trauma healing.
- queer jewish polyamorous mixed ethnicity Londoner, probably autistic
- I miss coffee and bread
Tips
- play ONE song a day, do only ONE drawing a week (or whatever is too small to have an impact on your health). Means you can have a regular practice of it. So you CAN sing, it's part of your daily identity. If it means an artwork takes months, so be it. You still end up having done it. It's not all or nothing.
- use mediums that don't require clean up (get into pens, forget lino printing). Put ukulele within arm's reach.
- caco nibs/hot chocolate/dark chocolate give me emergency energy
- acyclovir fixed my viral symptoms
- LDN allowed my brain fog to lift enough to have ideas again, to feel more myself
- 5 mins yoga daily prevents aches more than 2x 20 min walks a week.
- cocktail of supplements... luteolin and selenium are undersung
- radically accept limitations and oneself. Then the right people will come to you. You show them how to respect you by how you respect yourself. Have dates that are radically accessible to you. I will only have dates in my garden.
- learn to ask for help by starting with small things you don't really NEED to test if a particular person is not going to be weird about it
- live somewhere quiet where you can rest. If not, get Loop earplugs. Comfortable for side sleeping, effective.
- lots more tips, hence the one-day book
I am so sorry to anyone that got long covid. Governments have failed you.
Hi Lior! Thanks so much for being here and sharing your story and creative tips!
More rambling, incoming! Hello, I'm Britt in the USA! I started experiencing profound fatigue after an EBV infection wayyy back in 2004ish, when I was only 15. My mom somewhat believed me because she had experienced similar symptoms ever since she was about 30, but she had been completely and utterly ignored by her doctors so she told me that "it's normal for an adult to feel sick and miserable all the time, and you just have to get over it and toughen up". My father, however, told me that it was "all in my head" and that he'd throw me in a mental institution if I didn't start "acting normally". So I acted normal, and proceeded to constantly push-crash for almost two decades with little help or support.
I did manage to graduate college, but it was rough. Lots of failed classes, and I spent most of the time locked up alone in my dorm room. I also didn't have proper health insurance so I couldn't really seek medical care, and my family wouldn't help me get insurance. But that's okay, because one time when I went to the emergency room a doctor advised me to never mention chronic fatigue again and keep it out of my medical record, otherwise my doctors will think I'm a malingerer and refuse to help me. So I stopped going to the doctor entirely!
After college I married right away and with the financial support of my husband I was able to survive on my own, even though I struggled to maintain employment for more than a year or so at a time because I kept having health crises (which of course I managed alone). I first worked at homeless shelters, and then learned how to code and became a web developer. I also practiced a lot of yoga and got into endurance cycling. Riding my bike made my energy crash afterwards, but since I didn't experience flu symptoms I wasn't sure that I had post-exertional malaise, so I wasn't sure if I would qualify for an ME/CFS diagnosis or not. And I thought I was supposed to exercise in order to maintain my health. I also came down with EBV virus relapses at least once a year if not more, which would leave me feeling oppressively fatigued and with a very increased need for sleep for months at a time.
Fast forward to 2017...my husband and I acquired a strange infection that kept coming back for several years. We both had weird symptoms like chronic hives, periods of exhaustion, and cramping in the back of our calves. I tried to get help, but hundreds of lab tests and visits with over a dozen different doctors didn't yield any results. Eventually in 2019 I developed numbness/tingling in my extremities, joint pain, relapsing fevers, very severe muscle pain, sore lymph nodes, horrendous nausea and dizziness. I completely crashed and became unable to exercise, and unable to work. We couldn't pin down a source of the infection, so I tried experimental antibiotics with a lyme disease doctor which helped me with most of the acute infection symptoms. However, afterwards I was left with a more obvious case of ME/CFS.
After 18 years of hell, I'm finally about to visit an ME/CFS specialist for the first time ever. I've never, ever worked with a doctor who knew anything about my illness. Ever.
All I want right now, more than anything in the world, is to have a baby. So I want to find enough support and resources to make that happen. After that, I'd like to get a master's degree and become a mental health counselor, specializing in working with folks who have disabilities. Almost certainly just part time. I'm also the co-founder of a mutual aid project in my local city which aims to connect folks who live with disability so that we can create support networks and all help each other out. While I'm out of work, I've been learning the banjo and starting a garden. But mostly, I've just been resting and doing a LOT of therapy. I've realized that most of the hardship in my life has come not from my illness, but rather the complete and utter lack of support, accommodations, and love. I'm just getting into reading again for the first time as an adult...I had no idea that my auditory memory was less impaired than my visual, and it turns out audiobooks are a great help to me!
Hi Britt, thank you so much for being here and sharing your story. I’m so sorry you’ve been through such. Hard time and haven’t had the love and care that you deserve.
I love that you’re working to support others in your community and getting support through therapy. And I’m so glad you’ve discovered audiobooks - and banjo?! How cool is that!
I’m Lia. I got sick with ME/CFS in 2015 and had to switch from being a multidisciplinary composer/performer to focusing on writing and fibre arts. I’ve been working on a series of embroidery pieces exploring my various symptoms.
I became disabled in my mid-40s and have been so in awe of how supportive the chronic illness and disability communities are.
Hi Lia! Thanks so much for being here! Do you have a link to any pics of your art?!
Yes! There’s a bunch of things here: https://linktr.ee/lia_pas
I also have an essay about switching art forms with a lot of embroidery pieces interspersed throughout https://medium.com/the-operating-system/meaning-making-making-meaning-in-corpore-sano-presents-lia-pas-f8c0b50fb32d
Oh wow, I just quickly scrolled through the essay (have added to my Instapaper to read tomorrow!) and the embroidery is beautiful. I can't wait to read your essay. Thank you so much for sharing!
Thank you so much! 😊
Oh wow!! I just saw this part of the thread and checked your website!! We have much in common. I so deeply appreciate your work!
Thank you!
Isn’t it wonderful how fiber allows us to pick up and put down our projects? If you have a link I’d love to see also!!
Agreed on textiles!
Hi everyone! I’m Madelleine. I just started writing on Substack. I write about living and writing with a chronic illness — on creativity, feminist personal development and observations from my bed of this uncertain world. I think it will suit my broken body and mushy brain, not having to be a slave to algorithms and being able to write what I love, not on demand. I’ve been ill with ME since 2011 and mostly bedbound since 2018. I wish I had known about pacing when I became ill — like for real pacing, not just ‘stay within your envelope’, but wearing a heart rate monitor and knowing that I should only be doing 70% of what I can do, and not near 100%. Thank you for your work, Natasha!
Hi Madelleine! Thanks so much for being here. I can definitely relate to the benefits of writing on somewhere like Substack, compared to feeling like you have to constantly feed an algorithm. It helps a lot! Good luck with your Substack - I've made a note to check it out when I'm back from Germany :)
Thank you so much, Natasha! Tomorrow my second post is going out and I’m loving it so far. It’s so much easier and ‘brainfriendlier’ to write when I ask: what do I want to share today? rather than ‘what can I say that will give me the most likes’. Good luck on your trip to Germany — I’m in neighbouring Denmark.
I'm so glad you're loving it! I also find it's so nice, as you said, to not have to think about likes and focus more on actually having the time to think and explore!
Hi Natasha/ everyone!
I’m pretty new to Substack but saw you had created a space for this community in your welcome email and wanted to check it out. My name is Julia, and I was diagnosed with uveitis, a rare autoimmune disease that can cause you to lose your vision, nine years ago. I spent the first seven of those years not really telling anyone about it. My mom came with me to doctor’s appointments, but that was about it. I think I was afraid no one would understand, or start seeing me differently, so I went through it all alone and… it was awful. Then my condition started getting a lot worse right as Covid began. I was living in LA at the time, writing for TV shows, but decided to come home to New York to be closer to family and focus on my health.
I’ve now been here in NY for a little over two years, and while my condition has gotten a lot worse, it’s pushed me to finally open up to people and share what I’m going through (here I am, writing a public newsletter!) Essentially, it turned out none of the immunosuppressants they tried would help me, and so I’ve had five eye surgeries this year alone to try and save my vision. I’ve essentially been either in my bed or a doctor’s office/ hospital this entire summer, and I’m still not out of the woods. But I recently found that in my desire to try and update friends about what I was going through so I wouldn’t feel so alone, I thought of trying out this newsletter. I only published my first post last week, so I am very new to all this, but I am so happy I did. It felt incredibly therapeutic to channel all of this into a piece I could share instead of just having these thoughts stay in my notes app, and it’s a great creative outlet as well. I also had no idea there was such an incredible community on here, and have really loved checking out all these other newsletters on chronic illness.
A bit about me: I work as a comedy writer for animated shows and The New Yorker. While I’ve worked as a writer my whole life, this newsletter is the first time I’ve ever publicly written about my chronic illness and it’s been great but terrifying. I also really love listening to/ playing music and painting. I’m excited to be here and to keep reading all of your amazing work. ❤️
Hi Julia!
Thanks so much for being here and sharing your story. First of all, can I just say wow a cool job you have!
I'm so glad you feel that writing about your experience has been therapeutic - I can relate to how lonely it can feel to hide, or to not be understood. I definitely can relate to it being a creative outlet - and for me it almost helps to like...i don't know the best way to put this...externalise what's been going on and turn it into something that could potentially be helpful to others. It takes it outside of me and that helps a lot.
Hi Natasha! Thanks so much! I actually checked out Visible after reading your intro and it looks incredible.
Yes, I think there’s just always that fear of your illness because misunderstood when it’s hard to comprehend or relate to. But ultimately, it’s always worth it to try, and see who makes the effort to learn about it and inform themselves. And I relate to this feeling of externalizing a lot. It feels so nice to have these thoughts out in the world, and being able to connect with others, rather than keeping it all in. Anyway, thank you for creating this space! And if you have newsletter tips since you seem like a pro at this, I would really appreciate it :)
Aww thank you! Feel free to pop over any questions you have and I'll try my best to answer!
Hi Natasha. It's always nice to meet a fellow Spoonie. And I love to see people getting the word out on what life is like, battling the ins and outs of your body.
My name's Andria (Andi), and I've wrestled with primary diagnoses of fibromyalgia, migraines, and IBD since my early 20s (actually, the fibro didn't receive a confirmation until later). I've also struggled with Lyme, and I'm trying to get SOMEONE to figure out what's going on with my thyroid levels. (Good times)
I spent a solid 10 years in a funk over not getting answers before realizing I had two options: Continue on that path or take the opposite fork and at least find the humor in the situation. So now I use my writing to poke fun at the situation whenever I can (Invisible Inks is my Substack and weekly satirical outlet for invisible illness). But I also try to work the topic into as many of my essays as possible, to raise awareness and call attention to everyone fighting for the same answers I do.
And people respond to humor. So I figure it's a win-win. And, luckily, writing is at-home kind of job, so I don't have to fight with managers any more when my body decides it's had enough.
Hi Andi,
Thanks so much for being here and for sharing your stories! I can HARD relate to trying to get someone to figure out the thyroid stuff. I've been trying for over a decade and only FINALLY am getting it looked into now. I really hope you can get some help with it - it's shockingly bad how often that's ignored.
I love that you've found a way through this with humour - I definitely think it's one of the most underrated things. I look forward to checking out your Substack!
hi! i am kenzie. i am 16 years old and i was diagnosed with fibromyalgia, ME/CFS (myalgia encephalomyalitis/chronic fatigue syndrome), POTS (postural orthostatic tachycardia syndrome), and SFPN (small fiber polyneuropathy). i was in 8th grade when i got sick for about 3 weeks with coughing, ear infections, nausea, not being able to keep food down, headaches... basically all the symptoms you can think of. after the worst was over, i never fully recovered. my older brother has POTS as well and it took us a while to think that maybe i could have the same illness he has. i was finally diagnosed when i was 14. it’s hard to believe i’ve lived with this chronic illness and pain for 2 years already because it seems like it hasn’t been that long. i had to drop out of 8th grade because it was too much for me, tried to go back for 9th grade, dropped out, tried again for 10th grade and had to drop out again. it’s just so frustrating for me to have to make decisions about my future with high school and everything at such a young age. my parents have been amazing and understanding but it’s just hard. i’m definitely better than i used to be a year ago! still just trying to do my best & i love this idea, thank you for making this!!
Hi Kenzie, thank you so much for being here and for sharing your story. I'm so glad to hear your parents have been so supportive, but I'm so sorry you're having to experience this at such a young age. Doing our best is all that any of us can do!
I don't know if you saw, but I interviewed one of my childhood best friends about her experience of becoming sick at 12 and reflecting on that experience at 33. It may be of interest? https://natashalipman.substack.com/p/chronic-illess-me-child
thank you! i would love to listen to that, thanks so much!
Hi Im Amerdeep. I was diagnosed with fibromyalgia a few years ago and work full-time. I'm currently working on balance In my life as working full time us not possible anymore. My life consists of working and then resting to recover. I write and set up my own website blogging last year. Thus had taken a pause out of fatigue.
Feel kind of stuck. I had a plan to get out of work and perhaps work for myself but pain and fatigue has stopped that. I don't have the energy to build anything new after work.
Hi Amerdeep,
Thanks so much for sharing your story and for being here. I can relate to the working and all my spare time is recovery for that. What kind of support do you feel like you need in order to make that progress that you want?
Gosh... That's a good question I'm not even sure. I know I need more space and time in my life to not be working so I can create and write. Support... Hmm honestly don't know.
I hope you're able to find a way to make it work!
Hi everyone! Arriving here a few days late and am overwhelmed (in a good way) by all the replies; really looking forward to reading through more of the posts later.
I'm Zsofi, an art historian/writer/artist from Chicago, currently living in Berlin, about to move back to the US (Washington, DC). I travel a lot for my research and so was diagnosed with HSD via Zoom by a wonderful physical therapist in Chicago while I was living in Paris, in early 2021. I had been dealing with chronic joint pain and fatigue for 5+ years, but none of the doctors I saw in Chicago ever suggested HSD. It was my psychotherapist who had a cousin with EDS who suggested I research those diagnoses myself.
Then I got a formal diagnosis at an EDS/HSD-specialized clinic in Paris later that year––probably the greatest foreign language practice I've ever had. I was one tickbox away from an hEDS diagnosis but couldn't prove family history (a bit of a chicken-or-egg situation). I moved to Berlin in January 2022 and quickly found there were exactly zero healthcare providers in this city specializing in EDS or hypermobility, and was promptly gaslit by several doctors. Osteopathy has been the most healing and validating thing, but of course not covered by health insurance. Thanks to an osteopath in Paris, I cut gluten from my diet a year ago and the pain has drastically subsided. I've also self-diagnosed IBS but am still looking for a good healthcare team to help me navigate and manage my constellation of symptoms.
I've been searching for an online community like this for so long, and Natasha's podcast has been the most wonderful thing. I felt super emotional the first time I listened to it, and honestly want to move to the UK so I can have an OT like Jo!
My friend Emily and I are in the process of making a zine called High Functioning that explores, through art and humor, the gray area of being chronically ill and/or in pain, while appearing "not sick enough" to be taken seriously by doctors, mentors, partners, loved ones, etc. Submissions are still open if anyone wants to share art, writing, rants, comics, anything: https://www.instagram.com/highfunctioningzine/
Nice to meet you all :)))
Hi Zsofi,
Thanks so much for your kind words and for being here and sharing your story! So interesting you say that about osteopathy - anecdotally, it's something that has helped a LOT of people (myself included). It's a shame, my osteopath used to work in GP offices, but they stopped her funding so now works privately. Getting my body realigned is such a gamechanger for me. I honestly said I don't want to move from my area literally just because of my osteopath!
Good luck with your Zine - I can't wait to see what you do!!!
Hey! I'm Bryony. In 2018 I was diagnosed with severe stage 4 endometriosis. One of the hardest things was that GPs were largely interested in focusing on my pain experience as the result of my mental health. I also live with PTSD but my pelvic pain was no less real and should never have been dismissed this way. I know a lot of people with chronic illness struggle to be heard. The impact of a diagnosis with a condition that was so far advanced was really difficult and I have now developed persistant pain which is there everyday now. I will always wonder if I had been listened too sooner that this may have been different?
My experience has made me want to use my love of cartoons and graphic novels to convey the reality of living with a chronic illness to others and I hope that it will break down misconceptions surrounding long term illnesses too. Recently I made a short comic that mimics an alphabet book. It's called: My First Endometriosis Alphabet (https://bryonyattenburrow.com/my-endometriosis-alphabet/). If it raises awareness of the impact of endometriosis as well as a wry chuckle or two I would be so happy!
Thank you Natasha for your podcasts and writing around chronic illness. Your research and informations as been so helpful!!!
Hi Bryony,
I really love how you use your art to convey this reality, I always enjoy seeing what you post. A wry chuckle with awareness is always a good combination in my book!
Thank you Natasha! That's so great to hear! 🧡🧡🧡
Love this idea Natasha thank you! I'm Dolly! I graduated in 2016 in Forensic Chemistry & since then things went downhill quite quick. I had symptoms of food poisoning for 18 months, lost 5 stone, had various tests & procedures, & ended up being in constant pain, unable to get out of bed. A while later was diagnosed with fibromyalgia and have never been able to get back to myself since. (Fibro is something I don't think I have due to the nature I've got worse). I'm Unable to work or do most daily tasks, & if I get out of bed I usually call it a good day. It's been a constant battle from the start of my symptoms to this very moment. Managing chronic illness takes over your life & I just can't push through stuff anymore, left empty. Fighting doctors for help is a common theme, especially when I'm at my lowest & nothing seems to help. (doctors say just go for a walk like its that easy now). I keep myself busy crocheting but find I'm even a bit burnt out from that. Hoping one day I'll get a proper diagnosis & treatment so I can get back to work, but even then worry it would be too long a gap of unemployment. I didn't pay £9k in Uni fees for 4 years to live life indoors, skint, starving & fighting for daily life😂😭😭
Hi Dolly, thanks so much for being here and sharing your story - I really hope you're able to get the answers you deserve!
So, I was thinking about starting a home makeover/konmari-style Instagram spoof for chronic illness where I show that today I folded ten shirts and then napped for an hour. Or like, before and after of a coffee table that I spent 5 min tidying.
I feel like I need something to express myself right now, and sort of like my great sense of loss of my former life, but also that I’m still a person and can be silly. What do you guys think?
That sounds great!
“Chron-Mari” ?
Lolllll
Ok I did it. First post here: https://www.instagram.com/p/CgpOfVdOG3p/?igshid=YmMyMTA2M2Y=
Yessss!
Hello, I’m Tamsin living in the south west UK. I have lived with chronic pain and fatigue after having glandular fever in my late teens. In my 20s I was diagnosed with auto-immune hypothyroidism and, subsequently, fibromyalgia. I’m now in my 40s and in the last five/six years I have discovered I have a congenital neurological condition called Chiari malformation and syringomyelia. This was discovered on an MRI I had to investigate chronic migraine. So I’ve had a lot to get my head around this last few years!
Over time I have gradually learnt to pace, properly rest, say no when needed and most importantly enjoy the good times when I have energy for doing things. Actually, I’m still learning to do most of those things...
I work for a learning disability charity, part time from home, and when energy and my kids allow, I love to sew - patchwork, quilting, textile art.
Hi Tamsin,
Thanks so much for sharing and for being here! I'm so glad you've started the process of learning these things...I think it's a long process for so many of us. I'm still learning every day too :)
Hi friends! I'm Nita, and I'm passionate about reducing sentient suffering through chronic disease prevention. I identify with consilience, minimalism, effective altruism, and intentional living.
I have been sick for half my life with various conditions including chronic cystitis, dysautonomia, inflammatory bowel disease, polyneuropathy, seizures, and Ehlers-Danlos syndrome.
My goal is to translate my experiences into educational resources in order to effect positive change and encourage patient advocacy. Towards that end, I host a health podcast aimed at advancing scientific literacy on topics like longevity, metabolism, and the gut microbiome.
Thanks for creating this forum, Natasha! Looking forward to connecting with all of you!
Hi Nita, thanks so much for being here and it was lovely to meet you at Substack Grow last week! Didn't realise we have EDS in common. Hope to see you later!
What a great idea, Natasha!
My name is Elizabeth and I'm an artist/theatre director/actor, producer of plays, and TEFL teacher in training based in Los Angeles.
I have EDS, POTS, and MCAS, and was finally diagnosed in 2020 after fifteen years of active searching and a lifetime of weird symptoms (iykyk).
I'm currently working as director and background artist for a 9 short-episode animated series (think DnD meets Dark Souls meets really stupid). Keep updated on that release @h3rmart on Instagram.
So good to hear from you all!
Thanks so much for being Elizabeth! And how cool does that sound?! Congratulations! Looking forward to checking out!
I am really enjoying reading everyone's introductions and stories! Thanks so much for providing the opportunity, Natasha! I am a yoga therapist in Portland, Oregon, in the upper left corner of the US. I'm one of those people who hasn't been diagnosed with anything beyond IBS, anxiety/panic disorder, multiple food allergies and eczema...but who is always very vigilant about my health and I often feel like I'm just one illness or injury away from some sort of autoimmune disease diagnosis. I'm a former librarian and love to read uplifting memoirs about women living with chronic illness, so I'd love to hear your suggestions! I started a podcast this summer called, Swimming & Singing: a podcast for spoonies and the people who love them, where I chat with folks who have chronic illness (or work with folks with chronic illness,) and we dive into the ways we can find joy in life amidst the pain, exhaustion and overwhelm. Check the podcast out here: https://www.sarahnelsenyoga.com/podcast and if you've got something you'd like to share on the podcast, I'm always looking for guests! Speaking of podcasts, I'm a huge fan of The Rest Room and often recommend it to clients!
Thanks so much for your lovey words, Sarah! I’m looking forward to checking out your podcast! Have you read an invisible kingdom by Meghan o’rourke? It’s excellent!
Yes! I really liked Invisible Kingdom! And I'm slowly working my way through A Still Life by Josie George, it's a book that feels like it needs to be savored! Highly recommended!!
Oh I have that too! I haven't read it yet though.
Hey Sarah, I'm in Seattle! I'm definitely going to sign up for your email list, I've been trying to get back into yoga at home recently and even though I have my yoga certification from a decade ago, starting a practice back up with my body has felt somewhat overwhelming. Thank you for sharing!
Yea, we are neighbors! I'm a huge fan of practicing yoga in bed...kind of a combo of restorative and super gentle movement/stretching. That's great that you are a certified yoga teacher! Teaching has changed a lot in the past few years, (Covid,) and there are so many different sorts of online opportunities. Let me know if you ever want to chat yoga! :)
Hi, I’m Heather, I have chronic illness called Dystonia , I also have scoliosis and hearing impairment
Hello! I'm Stacey! Thank you Natasha for all the work and advocacy you do for the chronic illness community, especially those with ME/CFS.
I too have ME/CFS and am a writer. I am fortunate to work as a Spiritual Teacher / Director, which means I get to do work I love with amazing people from around the world on a schedule that allows for strict pacing and rest. It can be a lot to juggle, but I've found a way to make meaning in it all and enjoy the more physically limited life I now have.
Connecting with writers and creators like you helps immensely, as does connecting with others in the wider chronic illness community. Here is a recent article I wrote about living and working and resting with ME/CFS. https://wildgratitude.substack.com/p/chronic-illness-caring-compassion-mecfs-awareness
Hello Natasha! Thank you for providing this space to let people share their stories. I've been enjoying the posts from your readers. Their perspectives have been helpful to understand my own struggles and in developing empathy for fellow humans. Here is my contribution.
I'm Eve! I'm a mother, spouse, daughter, member of an extended chosen family, retired educator, VFX artist, and filmmaker, residing in North America. Finally, I've been properly diagnosed with mental and physical illness that I've been struggling with since birth. Symptoms from these disorders include - chronic fatigue, trouble keeping focus, memory loss, severe mood shifts, narcolepsy, slurred speech, and vertigo. I'm able to manage my conditions with strict diet, daily exercise, and work/life balance protocols. If I don't maintain a very specific routine, I'm rendered immobile for days. (I've chosen to keep my diagnosis private :)
Receiving a proper diagnosis has been very empowering for me. Many of my symptoms were misdiagnosed throughout the years because of my gender. Medical professionals would blame hormones during my teenage years and into my adulthood. I was prescribed medicine that was ineffective in treating my symptoms or would cause new ones. When I complained about this to my doctors, they would dismiss my experience and encouraged me to continue with the treatment plan. In art school, my peers assumed I had substance abuse problems, which caused further alienation. In my mid thirties, I was properly diagnosed with a series of metabolic disorders by my mother who observed me eating at a family party. (My mom is a nurse, but it took her 30+ years to figure out my issue...) Because I had an "ideal" body type, no one ever thought any of my symptoms were caused by the food I was eating. After I got control of my energy issues, I realized that I continued to have issues in my professional life - failure to finish projects, stick to deadlines, and focusing on task. My therapist suggested to read several books regarding my metabolic disorder. In reading, patients who had these disorders also struggled with mental health issues. The mental health issues had similar symptoms to what I was experiencing. I talked to my doctor and got tested. I was then diagnosed as neurodivergent. Identifying my issues has been so liberating! I finally have the means to communicate with others what my needs are and why. I'm glad that our culture is at a turning point where more people are willing to listen and support patients with chronic illness. There is a long way to go, but I feel so much progress has been made in my lifetime, so far. Instead of surviving, I'm beginning to thrive in my personal and professional life by knowing and respecting my limitations.
Thanks again for maintaining this community and producing important work!
In September 1989, I started my dream job; teaching high school physical education. But, five months later, before the end of my first year of teaching, I was diagnosed with multiple sclerosis. Ten years later, I left the only job I ever wanted due to worsening symptoms of MS.
In 2001, I returned to university to pursue graduate studies at the University of Toronto. My ultimate professional goal was to teach and supervise others keen to enter the teaching profession. In 2005 I graduated with a Ph.D. in Teacher Development. My research focused on the impact of chronic disease on teacher identity. I never secured a tenured position as a teacher educator and went on long-term disability in 2007.
Fourteen years later, I discovered my life was richer when I focused on living with MS as my best self. This shift in mindset opened the door to a newfound purpose in life; to help other women with MS to do the same.
Hello! I'm so happy to be here as I've been following your work for years, Natasha!
I have classical EDS and was lucky enough to be diagnosed at age 10. But the only thing doctors did for me then was to say "be careful," so I didn't seek any kind of treatment until I was 30. I wish I'd known earlier that no cure does NOT mean no treatment. It still shocks me how much having appropriate medical care improved my quality of life.
Things changed for me in 2020, when I had a vertebral artery dissection and series of strokes. As I healed, I felt deeply called to help more disabled writers tell their stories.
So after years as a professional editor, I'm now an editor and book coach who works exclusively with chronically ill and disabled writers! It has been so rewarding. The creativity of this community is incredible.
My memoir, Floppy: Tales of a Genetic Freak of Nature at the End of the World, won the Red Hen Nonfiction Book Award (a literary nonprofit in California) and comes out in May 2023.
I live in the States with my partner and two postural support kitties (i.e., they insist that I lie down to provide a lap OFTEN). I also draw comics and make greeting cards for people with EDS.
Thanks again for creating the space. Looking forward to getting to know you all!
Oh, and for anyone in the U.S., I'm on the Oregon coast. Are we neighbors??
Hi M! Yes, there's a lot of comments here - it definitely requires pacing. Thanks so much for being here and for sharing your story!