Listen now | I spent most of my formative adult years having to leave every job and opportunity that I had because I was too unwell to keep up. I’d push myself until I’d crash for months on end, leave the job, recover, try again somewhere else, and so the cycle would continue. All I wanted to do was work, to “live up to my potential” but I couldn’t figure out how to do it in a sustainable way.
Thank you! I got the gig and I asked for the top end of pay as nonchalantly as possible, and they said yes.
The interview went fairly well. I wasn’t feeling totally on form, but I think sometimes other people don’t notice (perhaps a silver lining of invisible illness on a “good” day).
I was able to talk about my health in a professional way. I’m excited!
I have an interview tomorrow to do remote, contract ghost writing/fundraising writing for a university Dean (similar to what I used to do full time). If anyone has additional tips on negotiating hours and pay while chronically ill, I’d love to hear.
My doctor approved up to 15 hours a week -- which still seems like a lot! But from researching the pay within my network, it seems very much worth trying. It would pay for most of my current wishlist, like a private service dog trainer, functional medicine testing, and porch repairs!
I can’t wait for Visible to let me off the waitlist! (Any chance?) I use my Garmin Lily and Connect app to track the same things that Visible tracks, but I’d love to use something that’s energy-limiting-illness friendly. It’s no fun being told by my watch that I need to “move more” when I’m at capacity and doing well or to “pace yourself” when I’m really ill in bed.
I identify with Beth and Bryony on the quite traumatic experience of working while ill -- and how it takes away your confidence and belief that you can actually accomplish things, and internalizing symptoms as flaws. My last job was actually amazing in terms of accommodations (free accessible transport, special chair, flexible hours and remote work as needed, very understanding about sick time and medical appointments). But it was just impossible for me to keep going with a 40+ hours per week job.
I was able to negotiate all of those accommodations when I accepted the job offer because I knew that without them I couldn’t accept the offer and I really knew my value in my career, so I was very direct. 18 months later, I don’t have the same confidence in my ability to deliver the high level of work I used to. So it’s really nerve-wracking. But I’m determined to negotiate in a similar way.
In higher education, I have found actually many managers who are willing to accommodate disabilities - mental health and physical health related. Perhaps this is a sector to focus on in a job search with chronic illness? Although in the US, the insistence on full-time work is really pervasive.
Sending you all the best of luck for this interview, Bea! I can totally relate to those feelings of losing you confidence - I have definitely had something similar.
One tip Pippa shared in this episode that I think is really important is being really aware and mindful of what is realistic energy-wise for you in terms of how that relates to your hours. For example, if that 15 hour week that your doctor mentions feels like it would be at the edge of your capacity, could you aim for less to see how it goes, and you can always build up if it is feasible. One thing I've definitely learned is that it's better for me to underestimate than overestimate!
I find it really important to be honest about my capacity and how I work - making sure adjustments are in place but also realistic about what I can do. Your skills and abilities are still there and you have so much to offer - it may just be a bit differently than before. For me, it's about workload balance - I can maybe do one or two things at a high level, just not all of it. But I still often feel like I don't live up to my potential.
It's great that you have had positive experiences that you can draw on. Sorry I'm terrible re financial negotiating though so I have no tips there.
A bit of a delayed reply but really wanted to say 'thank you' for this podcast episode. I'm not in a position to work but knowing that there are employers and resources out there that actually value disabled people is so wonderful to hear. When I was in work I was undiagnosed and that was a really difficult combination and to be honest I think I internalised a lot of my symptoms (fatigue, brain fog, pain experience) as character flaws to be corrected. Which I now know they are absolutely not! I wonder if being able to put better safe guarding around my energy could have helped avoid the strain on my body but without a diagnosis it may well have been impossible to arrange? I really hope that employers can become so much better at recognising that we all have strengths, ways of working + thinking that are unique and different from one person to the next and that making adjustments for disability is in keeping with respecting how each person can give the best of themselves.
Thank you so much - and I think the point you made about how easy it is to internalise these symptoms is such an important. I hope employers get better at recognising that too!
Thank you so much for this episode! After quitting last December (employer unwilling to make accommodations, work directly causing flare-ups), I've been stressed about how to financially support myself. It was lovely to hear that there are some resources out there I might be able to use to find employment, and that needing accommodation is not invalidating or automatically going to be a blocker for my being hired somewhere. I hope you do more episodes exploring how to work with chronic illness (and how do you even determine what you can do anymore? with the worsening brain fog, I feel like all my skills are gone), how to pace effectively when you have things like deadlines and work meetings and whatnot that take priority, etc.
I'm sorry to hear that, Beth! Yes, I definitely want to do more on this topic - and that's actually why I'm so interested in what I'm learning from Visible in terms of learning and better understanding my capacity!
Thank you! I got the gig and I asked for the top end of pay as nonchalantly as possible, and they said yes.
The interview went fairly well. I wasn’t feeling totally on form, but I think sometimes other people don’t notice (perhaps a silver lining of invisible illness on a “good” day).
I was able to talk about my health in a professional way. I’m excited!
Oh my gosh congratulations!!!
Thanks! The next step is to do much less than I think I can handle, which is always the difficult bit.
And truly, your work and this community have helped me get to this place where I can even think about working again.
Honestly, thank you. I am so beyond thrilled for you and I'm so glad this has helped you <3
Another delayed thanks for this episode!
I have an interview tomorrow to do remote, contract ghost writing/fundraising writing for a university Dean (similar to what I used to do full time). If anyone has additional tips on negotiating hours and pay while chronically ill, I’d love to hear.
My doctor approved up to 15 hours a week -- which still seems like a lot! But from researching the pay within my network, it seems very much worth trying. It would pay for most of my current wishlist, like a private service dog trainer, functional medicine testing, and porch repairs!
I can’t wait for Visible to let me off the waitlist! (Any chance?) I use my Garmin Lily and Connect app to track the same things that Visible tracks, but I’d love to use something that’s energy-limiting-illness friendly. It’s no fun being told by my watch that I need to “move more” when I’m at capacity and doing well or to “pace yourself” when I’m really ill in bed.
I identify with Beth and Bryony on the quite traumatic experience of working while ill -- and how it takes away your confidence and belief that you can actually accomplish things, and internalizing symptoms as flaws. My last job was actually amazing in terms of accommodations (free accessible transport, special chair, flexible hours and remote work as needed, very understanding about sick time and medical appointments). But it was just impossible for me to keep going with a 40+ hours per week job.
I was able to negotiate all of those accommodations when I accepted the job offer because I knew that without them I couldn’t accept the offer and I really knew my value in my career, so I was very direct. 18 months later, I don’t have the same confidence in my ability to deliver the high level of work I used to. So it’s really nerve-wracking. But I’m determined to negotiate in a similar way.
In higher education, I have found actually many managers who are willing to accommodate disabilities - mental health and physical health related. Perhaps this is a sector to focus on in a job search with chronic illness? Although in the US, the insistence on full-time work is really pervasive.
Anyway, wish me luck and thank you again Natasha.
Sending you all the best of luck for this interview, Bea! I can totally relate to those feelings of losing you confidence - I have definitely had something similar.
One tip Pippa shared in this episode that I think is really important is being really aware and mindful of what is realistic energy-wise for you in terms of how that relates to your hours. For example, if that 15 hour week that your doctor mentions feels like it would be at the edge of your capacity, could you aim for less to see how it goes, and you can always build up if it is feasible. One thing I've definitely learned is that it's better for me to underestimate than overestimate!
I find it really important to be honest about my capacity and how I work - making sure adjustments are in place but also realistic about what I can do. Your skills and abilities are still there and you have so much to offer - it may just be a bit differently than before. For me, it's about workload balance - I can maybe do one or two things at a high level, just not all of it. But I still often feel like I don't live up to my potential.
It's great that you have had positive experiences that you can draw on. Sorry I'm terrible re financial negotiating though so I have no tips there.
Good luck again - let us know how it goes!
A bit of a delayed reply but really wanted to say 'thank you' for this podcast episode. I'm not in a position to work but knowing that there are employers and resources out there that actually value disabled people is so wonderful to hear. When I was in work I was undiagnosed and that was a really difficult combination and to be honest I think I internalised a lot of my symptoms (fatigue, brain fog, pain experience) as character flaws to be corrected. Which I now know they are absolutely not! I wonder if being able to put better safe guarding around my energy could have helped avoid the strain on my body but without a diagnosis it may well have been impossible to arrange? I really hope that employers can become so much better at recognising that we all have strengths, ways of working + thinking that are unique and different from one person to the next and that making adjustments for disability is in keeping with respecting how each person can give the best of themselves.
Thank you so much - and I think the point you made about how easy it is to internalise these symptoms is such an important. I hope employers get better at recognising that too!
Thank you so much for this episode! After quitting last December (employer unwilling to make accommodations, work directly causing flare-ups), I've been stressed about how to financially support myself. It was lovely to hear that there are some resources out there I might be able to use to find employment, and that needing accommodation is not invalidating or automatically going to be a blocker for my being hired somewhere. I hope you do more episodes exploring how to work with chronic illness (and how do you even determine what you can do anymore? with the worsening brain fog, I feel like all my skills are gone), how to pace effectively when you have things like deadlines and work meetings and whatnot that take priority, etc.
I'm sorry to hear that, Beth! Yes, I definitely want to do more on this topic - and that's actually why I'm so interested in what I'm learning from Visible in terms of learning and better understanding my capacity!