August was a very mixed bag of a month for me. In the positive corner, Sebastian and I got married and had a lovely day. In the not-so-positive corner, Sebastian got Covid two weeks before the wedding, there was a heatwave, I massively overdid it socially and work-wise, my Hashimoto’s treatment is turning out to be more difficult than I expected, and my PoTS symptoms got re-triggered after a bath with new salts and over two weeks later they haven’t calmed down. I think that was maybe the straw that broke the camel’s back.
After a hopeful few months where my health was on the upswing, I’m feeling a bit dejected, frustrated and sad because I’ve been feeling rather bloody rubbish once again.
That being said, given everything that has been going on, it probably shouldn’t be a surprise. I have an appointment with my OT in a few weeks to talk about trying to find a better balance with things and get some support for some tangible things I can do to, and then we’re off on honeymoon to the south of France. I cannot put into words how much I am looking forward to that.
For today’s conversation thread, I wanted to discuss something that has been on my mind a lot recently: creativity when you live with chronic illness.
One of the loveliest things about reading through the comments on our last two threads has been seeing how many talented, creative, interesting people are here (thank you <3) and how you’ve all been learning to reconceptualise creative practice in a way that is accessible and manageable with your chronic illnesses.
In a recent interview I did with the Substack team, they asked me: “How do you balance running your Substack alongside your own illness?”
I answered: “It’s hard. You want to get into the flow of things and just write and write because you have so many ideas, but your brain and body is screaming at you to stop. I’m trying to learn a different way of being creative, one that enables me to be more mindful of taking breaks and not pushing myself too far. It’s … a work in progress.”
Finding ways to write and make and do whilst still staying in that flow state is something I have not quite cracked. It’s always “just a little bit more” because that stuff is LITERALLY THERE AND WHAT IF I FORGET IF I DON’T JUST DO IT NOW? Or I can’t get back in the zone? But that “just a little bit more” is what can push you over the edge.
Writing, for me, is how I process things in my life. Whether it’s published or not, I’ve always used writing as a way to work through my thoughts and feelings on things. It gets it out of my head and helps me make sense of the world. I have fragments of essays, of thoughts, littered in all different places across my devices. Most of it never gets used, but when something needs to be written, it just…needs to be written. And enforcing a break, even if I know that I can come back to it later, kind of ruins the moment.
With that in mind, that’s what I’d love to hear from you about today. Here are some prompts, in case that’s helpful:
What does creativity mean to you?
How do you incorporate creative practice into your life?
Do you feel like creativity and your creative practice helps you manage your chronic illness?
What challenges do you come up against when trying to be creative with your chronic illness?
How do you navigate those challenges? Have you learned a new way of being creative? What does that look like?
What has been the biggest lesson you’ve learned about creativity?
Over to you! But first, a quick disclaimer:
This a place to share and discuss topics that can be personal and challenging. We all have different experiences, and that’s ok! Please refrain from offering unsolicited medical advice. Make sure to treat everyone with kindness and respect. Basically, don’t be an internet arsehole.
I look forward to chatting with you in the comments!
August sounds like a lot! Summer and repeated heatwaves have been really rough on me too. I really hope that the next few months will be an improvement for you and that you have a wonderful honeymoon.
Creativity keeps me sane. I have lots of different things that I can pick up, do a little bit and put down again depending on how I feel and there's a definite correlation between feeling good and how creative I've been in a day. With the endless heatwaves I really struggled with having to spend so much time lying down in the dark not being able to do much and it's so nice to be doing more again. I try to do a little of at least one fibre thing (crochet, weaving, cross-stitch) and one arty thing (drawing, colouring, painting) each day. I tidy but don't fully put stuff away to make it easier to get started and to stop. It's also really nice to have that pleased feeling of "I did that!" seeing my open sketchbook on the table when I walk past it.
My big challenge is stopping before my brain and body force me to. I'm trying to remember that doing too much will stop me doing everything for longer and that it sucks to cause myself so much pain that I'm forced to go and lie down with my heat pad and think about what I've done!
Finding natural stopping points for microbreaks and longer breaks helps but that's easier with some things than others. Crochet is the easiest, writing is the hardest. I started a blog a while back and can't manage writing often but when I can I want to write every thought in my head all at once without stopping, which is a recipe for a headache. I'm trying to put thoughts in bullet points to come back to later so I don't forget them and that's going a little better.
Sep 5, 2022·edited Sep 5, 2022Liked by Natasha Lipman
I don’t suffer from a chronic physical illness like you, but I suffer from some mental health disorders - PTSD, depression, anxiety, that typically accompany physical and chronic illnesses and I am struck by your newsletter. I’m glad I found you, through the On Substack post, because it’s difficult for me to balance creativity, motivation, mental health, and exterior life.
My energy stores get tapped out pretty rapidly (and if I’m spending time with negative or toxic people or energy sources, that can surely wreck my creative fertility for the present moment) and I often feel guilty or even some shame about my inability to do all the things I want to do, especially creatively.
My creativty spins like a wheel - I’ve learned that by keeping my hands busy, I’m able to keep my brain demons at bay. I don’t always have the mental energy to expend on writing my newsletter or my novel, so I switch it up by doing more hand-laborious things like building small scale war dioramas (I’ve been working on my current one for nearly 15 years!), playing my guitar, or painting (I’m no artist, though) which I find all help build my creative “stock”, allowing me to vacillate between projects.
Enjoy your honeymoon, the time passe so quickly! And thank you, again, for doing this newsletter - for pouring your sleepless nights, hazy mornings, and sometimes painful, sometimes joyous days and experiences with us. SO GLAD I FOUND YOU! <3`
So sorry to hear of your setback. So many chronic symptoms seem to be exacerbated by stress, don't they?
[Synchronously, I too have been writing about "straws that break the camels" back this week.].
I am with you on the writing. It really helps me to get things out of my system and work through things, and ultimately understand myself. It also gives me a feelgood factor, when readers reply that it has helped them. According to Prof. Andrew Huberman, it is not just being grateful for other people, it is actually being on the receiving end of gratitude which is the real powerhouse of healing.
Interesting, for me, if I can get into the flow state of creative writing, I find I can go longer without the Parkinson's meds wearing off, so I think there is something dopamine generating with this state. Then I will suddenly crash once the piece of writing is finished.
Leah, you are not the only one late to the party. I read this post when it first came out, but never had time to respond. But I definitely wanted to. I really recognized myself in this post-- I have the same problem of not being able to stop. I will start to write music or poetry and always think to myself oh just a little bit more and a little bit more and a little bit more translates to staying up all night. Then I’m thrown off balance for the next two days. I need to find my balance. And it sounds like others have similar problems ,which is a help to know. Thank you for this group.
P. S. I am writing on my phone using a voice conversion program because I have a tremor and phone keyboards don’t work very well for me. So please excuse any roughness in this comment of mine. I’m literally talking from the top of my head. :-)
I’m a bit late to the discussion but it’s great to read about everyone’s creative processes! I’ve been a multidisciplinary artist my entire life so when I became disabled with ME/CFS in my mid-40s I knew I had to continue making meaning in that way.
I’ve focused on embroidery since I got sick but have been able to add writing back into my practice and a bit of music via piano and some composing. I use a modified pomodoro method to make sure I don’t overdo it. Stitching is a restorative activity for me so I use it as my breaks between writing and music.
For me, creativity is a way of interpreting the world and making meaning from my experience. Creativity is a way of taking the information and sensation I receive and processing it into something to share, hopefully something that connects with others. (you can see and listen here: hollismickey.com).This can be food, textiles, music, performance. My art practice has always been quite physical: chopping, tons of tiny stitches (which looks not physical but is!), playing instruments, using my body as a sculpture. And, often I make things that take a long time to make, and/or share them in long duration (ex performances lasting hours, elaborate meals). I have had a diagnosis of dysautonomia which comes with orthostatic intolerance, me/cfs, chronic pain, hEDS, GI distress etc etc since 2015 but I believe the onset was in 2010 after I got h1N1. Recently, my orthostatic intolerance, pain and all symptoms have escalated to extremes. I really stopped making things like textiles and music and performance that felt like they involved more of my body for a bit. I was actually already enrolled in a low residency MFA in poetry, so I just focused on that. Poetry allowed for me to think visually (how it looks on the page), sonically (how it sounds), and through connection (meaning). I could pace myself more, stop, return, revise and much of it rather reclined. Still, I was waiting to be 'better' to return to my other activities. After over a year of doctors visits I realized that 'better' was no longer a word I wanted to use. I would see improvements, but I needed to let go of that waiting for some body of before. I started learning how to play music again, now entirely seated, cross legged, in short stints (as sometimes sitting up bothers me too). I wanted to share but I cannot perform out (covid, stamina, etc) so I decided to share on Instagram live-- you can catch me there sometimes and in my reels (@apronon). I play now in ways that feel healing and restorative. And, I am working on an album of improvisations since compositions is more than I can take on. I determined that plating my food, which my body does not always willingly consume would be a practice I was proud of, and I post dinner in my stories. I have other little daily practices I have written of before in these threads also. Anyways, this is long, but all this is to say I struggle with creativity as it is such a part of my identity, and often long for 'before' but I also am finding that discovering new ways to make can bring new meaning to me and to others.
Sorry to hear you're not having such a great time - although congrats on the wedding! I hope you have a lovely Honeymoon when it comes
I've always enjoyed being creative but it was never that important until I became ill. Suddenly it shifted from being something nice to do in leisure time to a priority activity that still made me feel like 'me'. It feels so good to do something meaningful, and you can look back at what you have made.
I initially wrote a lot of poetry when I first became ill to try to express how I was feeling - as I felt so alone. It was a really good way to get my feelings out. I've now moved onto knitting and sewing, although I'm having to be super strict when learning new things as it is so cognitively draining, and when using a sewing machine you have to sit upright. Knitting is easier as you can lay on the sofa and do that, plus it is more familiar to me so more like relearning an old skill rather than a completely new one.
I'm loving reading other people's thoughts on this topic!
Love this post Natasha! And thank you for your podcasts on pacing as when I was first taught about pacing it was really hurried and did mot make much sense to me and I was essentially told to only do 20mins of art a day. this more than any other part of treatment or even symptoms had me spiralling into despair as it placed an arbitrary block on something I truly loved doing. And I had no idea how rest either!
Overtime I found that my creativity wasn't just this one activity 'at a desk' and that reading or listening to audiobooks/radio/podcasts that related to what I was making were also part of the whole process. I've built up a library of books which helps me as a visual reference that I am learning more about making art + stories even if I haven't put a mark on paper or picked up drawing styles that day or days or weeks.
I also decided to embrace technology which I felt was a bit taboo in the art world as a 'cheat' approach but I started to wonder why this was? Especially as technology isn't a problem with writing as much?! I've been starting to research different art movements throughout history and around the world to understand more about which ideas I have absorbed and which I want to keep hold of about the ways to make art or tell stories.
I love your multi-disciplinary approach Natasha and also hearing your actual voice as well as your writing voice too!
I really hope you have a lovely time on honeymoon and that you are able to enjoy all the patisserie you can find! And I'm so sorry to hear you've been through such a rubbish time. I hope that changes soon too x
My heart aches to hear that you’re having such a hard time. I just have to say that I especially love this piece, as you are one of the most creative people I know. You have wonderful ideas and you make terrific connections and you bring them into the world and articulate them beautifully. You are also quite amazing at creating solutions to problems. Honeymoon in the south of France sounds like just what the schrayber ordered ♥️
I relate so much to others’ thoughts on fiber as a chronic illness friendly thing to do. Sometimes I can’t follow the threads of my thoughts, but I can always come back to a line of rope because it’s physically there.
You can take it so slow. With macrame, you can take a break almost any time as each knot tends to secure itself. I will sometimes set timers to remind myself to stop - that really is the difficult part!
This is timely for me, as this week my brain suddenly went into creative overdrive mode (which is also a big danger, because that often happens as a distraction technique for me, and because I tend to fall into the 'trap' of jumping into a new creative endeavor, get overwhelmed and exhausted, and end up dropping it and feeling guilty for years afterward).
Creativity used to be big ideas, but since the recent change in my ME/CFS (to be constant, rather than cyclical/manageable) it's morphed to encompass anything from "oh, I have this funny story idea that can exist without me actually writing it down or writing said story" to "I'm going to use a shimmery gold ink to journal my thoughts and symptoms today". Creativity has always been, for me, very hope-affirming, empowering, and strengthening. When I'm able to be creative, I feel 'tapped in' to the magic of wonder in the world. And I've always valued creativity in people (and wit/cleverness) so when I have it I feel capable and worthy in ways I do not, without it.
All that said, my expressions of creativity in terms of projects are absolutely antithetical to managing my chronic illnesses. I've had to learn to be satisfied with using interesting colors of fountain pen ink as my only daily creative practice, because taking a creative idea and running with it (baking something, cooking a new dish, sewing an outfit for my dog, hosting a readathon on my blog, etc.) require *so* much energy management, always more than I anticipate. And while ideally I'd give myself plenty of run-up time to accomplish said creative task, once the newness of a creative idea wears off, the whole thing feels stale and pointless, so I'm always trying to prioritize that creative project once it's in my head.
Right now I'm struggling a lot with needing to consider ways to earn money (I don't qualify for disability, but I'm not capable of working even a part-time job right now), and my brain keeps latching onto ideas for creative new hobbies. Perhaps there's an intersection there, where a creative hobby could make me money, but I did that once (for 5 years) and it wasn't an income *and* it soured me on the creative hobby itself because I was obligated to do it. Yet this hyperfixation continues.
August sounds like a lot! Summer and repeated heatwaves have been really rough on me too. I really hope that the next few months will be an improvement for you and that you have a wonderful honeymoon.
Creativity keeps me sane. I have lots of different things that I can pick up, do a little bit and put down again depending on how I feel and there's a definite correlation between feeling good and how creative I've been in a day. With the endless heatwaves I really struggled with having to spend so much time lying down in the dark not being able to do much and it's so nice to be doing more again. I try to do a little of at least one fibre thing (crochet, weaving, cross-stitch) and one arty thing (drawing, colouring, painting) each day. I tidy but don't fully put stuff away to make it easier to get started and to stop. It's also really nice to have that pleased feeling of "I did that!" seeing my open sketchbook on the table when I walk past it.
My big challenge is stopping before my brain and body force me to. I'm trying to remember that doing too much will stop me doing everything for longer and that it sucks to cause myself so much pain that I'm forced to go and lie down with my heat pad and think about what I've done!
Finding natural stopping points for microbreaks and longer breaks helps but that's easier with some things than others. Crochet is the easiest, writing is the hardest. I started a blog a while back and can't manage writing often but when I can I want to write every thought in my head all at once without stopping, which is a recipe for a headache. I'm trying to put thoughts in bullet points to come back to later so I don't forget them and that's going a little better.
I don’t suffer from a chronic physical illness like you, but I suffer from some mental health disorders - PTSD, depression, anxiety, that typically accompany physical and chronic illnesses and I am struck by your newsletter. I’m glad I found you, through the On Substack post, because it’s difficult for me to balance creativity, motivation, mental health, and exterior life.
My energy stores get tapped out pretty rapidly (and if I’m spending time with negative or toxic people or energy sources, that can surely wreck my creative fertility for the present moment) and I often feel guilty or even some shame about my inability to do all the things I want to do, especially creatively.
My creativty spins like a wheel - I’ve learned that by keeping my hands busy, I’m able to keep my brain demons at bay. I don’t always have the mental energy to expend on writing my newsletter or my novel, so I switch it up by doing more hand-laborious things like building small scale war dioramas (I’ve been working on my current one for nearly 15 years!), playing my guitar, or painting (I’m no artist, though) which I find all help build my creative “stock”, allowing me to vacillate between projects.
Enjoy your honeymoon, the time passe so quickly! And thank you, again, for doing this newsletter - for pouring your sleepless nights, hazy mornings, and sometimes painful, sometimes joyous days and experiences with us. SO GLAD I FOUND YOU! <3`
So sorry to hear of your setback. So many chronic symptoms seem to be exacerbated by stress, don't they?
[Synchronously, I too have been writing about "straws that break the camels" back this week.].
I am with you on the writing. It really helps me to get things out of my system and work through things, and ultimately understand myself. It also gives me a feelgood factor, when readers reply that it has helped them. According to Prof. Andrew Huberman, it is not just being grateful for other people, it is actually being on the receiving end of gratitude which is the real powerhouse of healing.
Interesting, for me, if I can get into the flow state of creative writing, I find I can go longer without the Parkinson's meds wearing off, so I think there is something dopamine generating with this state. Then I will suddenly crash once the piece of writing is finished.
I am grateful to have found your substack.
Leah, you are not the only one late to the party. I read this post when it first came out, but never had time to respond. But I definitely wanted to. I really recognized myself in this post-- I have the same problem of not being able to stop. I will start to write music or poetry and always think to myself oh just a little bit more and a little bit more and a little bit more translates to staying up all night. Then I’m thrown off balance for the next two days. I need to find my balance. And it sounds like others have similar problems ,which is a help to know. Thank you for this group.
P. S. I am writing on my phone using a voice conversion program because I have a tremor and phone keyboards don’t work very well for me. So please excuse any roughness in this comment of mine. I’m literally talking from the top of my head. :-)
I’m a bit late to the discussion but it’s great to read about everyone’s creative processes! I’ve been a multidisciplinary artist my entire life so when I became disabled with ME/CFS in my mid-40s I knew I had to continue making meaning in that way.
I’ve focused on embroidery since I got sick but have been able to add writing back into my practice and a bit of music via piano and some composing. I use a modified pomodoro method to make sure I don’t overdo it. Stitching is a restorative activity for me so I use it as my breaks between writing and music.
For me, creativity is a way of interpreting the world and making meaning from my experience. Creativity is a way of taking the information and sensation I receive and processing it into something to share, hopefully something that connects with others. (you can see and listen here: hollismickey.com).This can be food, textiles, music, performance. My art practice has always been quite physical: chopping, tons of tiny stitches (which looks not physical but is!), playing instruments, using my body as a sculpture. And, often I make things that take a long time to make, and/or share them in long duration (ex performances lasting hours, elaborate meals). I have had a diagnosis of dysautonomia which comes with orthostatic intolerance, me/cfs, chronic pain, hEDS, GI distress etc etc since 2015 but I believe the onset was in 2010 after I got h1N1. Recently, my orthostatic intolerance, pain and all symptoms have escalated to extremes. I really stopped making things like textiles and music and performance that felt like they involved more of my body for a bit. I was actually already enrolled in a low residency MFA in poetry, so I just focused on that. Poetry allowed for me to think visually (how it looks on the page), sonically (how it sounds), and through connection (meaning). I could pace myself more, stop, return, revise and much of it rather reclined. Still, I was waiting to be 'better' to return to my other activities. After over a year of doctors visits I realized that 'better' was no longer a word I wanted to use. I would see improvements, but I needed to let go of that waiting for some body of before. I started learning how to play music again, now entirely seated, cross legged, in short stints (as sometimes sitting up bothers me too). I wanted to share but I cannot perform out (covid, stamina, etc) so I decided to share on Instagram live-- you can catch me there sometimes and in my reels (@apronon). I play now in ways that feel healing and restorative. And, I am working on an album of improvisations since compositions is more than I can take on. I determined that plating my food, which my body does not always willingly consume would be a practice I was proud of, and I post dinner in my stories. I have other little daily practices I have written of before in these threads also. Anyways, this is long, but all this is to say I struggle with creativity as it is such a part of my identity, and often long for 'before' but I also am finding that discovering new ways to make can bring new meaning to me and to others.
Sorry to hear you're not having such a great time - although congrats on the wedding! I hope you have a lovely Honeymoon when it comes
I've always enjoyed being creative but it was never that important until I became ill. Suddenly it shifted from being something nice to do in leisure time to a priority activity that still made me feel like 'me'. It feels so good to do something meaningful, and you can look back at what you have made.
I initially wrote a lot of poetry when I first became ill to try to express how I was feeling - as I felt so alone. It was a really good way to get my feelings out. I've now moved onto knitting and sewing, although I'm having to be super strict when learning new things as it is so cognitively draining, and when using a sewing machine you have to sit upright. Knitting is easier as you can lay on the sofa and do that, plus it is more familiar to me so more like relearning an old skill rather than a completely new one.
I'm loving reading other people's thoughts on this topic!
Love this post Natasha! And thank you for your podcasts on pacing as when I was first taught about pacing it was really hurried and did mot make much sense to me and I was essentially told to only do 20mins of art a day. this more than any other part of treatment or even symptoms had me spiralling into despair as it placed an arbitrary block on something I truly loved doing. And I had no idea how rest either!
Overtime I found that my creativity wasn't just this one activity 'at a desk' and that reading or listening to audiobooks/radio/podcasts that related to what I was making were also part of the whole process. I've built up a library of books which helps me as a visual reference that I am learning more about making art + stories even if I haven't put a mark on paper or picked up drawing styles that day or days or weeks.
I also decided to embrace technology which I felt was a bit taboo in the art world as a 'cheat' approach but I started to wonder why this was? Especially as technology isn't a problem with writing as much?! I've been starting to research different art movements throughout history and around the world to understand more about which ideas I have absorbed and which I want to keep hold of about the ways to make art or tell stories.
I love your multi-disciplinary approach Natasha and also hearing your actual voice as well as your writing voice too!
I really hope you have a lovely time on honeymoon and that you are able to enjoy all the patisserie you can find! And I'm so sorry to hear you've been through such a rubbish time. I hope that changes soon too x
My heart aches to hear that you’re having such a hard time. I just have to say that I especially love this piece, as you are one of the most creative people I know. You have wonderful ideas and you make terrific connections and you bring them into the world and articulate them beautifully. You are also quite amazing at creating solutions to problems. Honeymoon in the south of France sounds like just what the schrayber ordered ♥️
I just wanted to circle back and (finally) share some of the fiber stuff I’ve been making.
My little Etsy: longmorestudioco.etsy.com
The first wall hanging I actually finished: https://www.instagram.com/p/Cjd21BQplgN7pfkmCM9-cRFPgvBbhsHC2qrLc00/?igshid=MDJmNzVkMjY=
A fun fringey plant hanger: https://share.icloud.com/photos/00bIb36E4G-wP_ZoLr1QIxwVg
I relate so much to others’ thoughts on fiber as a chronic illness friendly thing to do. Sometimes I can’t follow the threads of my thoughts, but I can always come back to a line of rope because it’s physically there.
You can take it so slow. With macrame, you can take a break almost any time as each knot tends to secure itself. I will sometimes set timers to remind myself to stop - that really is the difficult part!
This is timely for me, as this week my brain suddenly went into creative overdrive mode (which is also a big danger, because that often happens as a distraction technique for me, and because I tend to fall into the 'trap' of jumping into a new creative endeavor, get overwhelmed and exhausted, and end up dropping it and feeling guilty for years afterward).
Creativity used to be big ideas, but since the recent change in my ME/CFS (to be constant, rather than cyclical/manageable) it's morphed to encompass anything from "oh, I have this funny story idea that can exist without me actually writing it down or writing said story" to "I'm going to use a shimmery gold ink to journal my thoughts and symptoms today". Creativity has always been, for me, very hope-affirming, empowering, and strengthening. When I'm able to be creative, I feel 'tapped in' to the magic of wonder in the world. And I've always valued creativity in people (and wit/cleverness) so when I have it I feel capable and worthy in ways I do not, without it.
All that said, my expressions of creativity in terms of projects are absolutely antithetical to managing my chronic illnesses. I've had to learn to be satisfied with using interesting colors of fountain pen ink as my only daily creative practice, because taking a creative idea and running with it (baking something, cooking a new dish, sewing an outfit for my dog, hosting a readathon on my blog, etc.) require *so* much energy management, always more than I anticipate. And while ideally I'd give myself plenty of run-up time to accomplish said creative task, once the newness of a creative idea wears off, the whole thing feels stale and pointless, so I'm always trying to prioritize that creative project once it's in my head.
Right now I'm struggling a lot with needing to consider ways to earn money (I don't qualify for disability, but I'm not capable of working even a part-time job right now), and my brain keeps latching onto ideas for creative new hobbies. Perhaps there's an intersection there, where a creative hobby could make me money, but I did that once (for 5 years) and it wasn't an income *and* it soured me on the creative hobby itself because I was obligated to do it. Yet this hyperfixation continues.