In Disability Denial
I work three days a week as a GP Registrar. This makes me a ‘Less Than Full Time’ trainee, working 60%. Through my medical career, I’ve worked 100% (my first year, because I didn’t know there was the option to work less), 80% with a 20% secondment to the British Medical Association, and since I’ve started GP training, I’ve dabbled in both 80% and 60%, settling on 60.
My physical disability is my official reason for not working full time, but I really enjoy being able to have a portfolio career as a trainee through having a more flexible schedule. My ADHD thrives on variety, and despite last week’s post being on the power of saying no, I love being able to take so many of the opportunities thrown my way. What’s more, I’m honestly not sure I’d still be in medicine at all if I weren’t able to work at a much reduced level. At the start of this year, I had a few months off with some truly catastrophic burn out. My dad was diagnosed with terminal appendix cancer (he’s still here and doing relatively well), and the impact of that plus the delayed processing of working through a pandemic, along with a huge amount of moral injury left me utterly broken. I was crying most days and didn’t really want to be anywhere anymore. It was only thanks to my incredible loved ones, some remarkable friends and a truly phenomenal therapist that I made it back to work at all.
I know deep down that I need to work clinically no more than 3 days a week because my body simply can’t manage much more than that - but I am also the queen of pretending otherwise. This last week, I gave 2 talks (one of which involved an overnight stay in Norwich), did three days of clinical work, and started my new job teaching first year medical students at Leeds Uni one morning a week. I didn’t get my normal Weds and Thurs at home, working in my PJs, writing and catching up with emails. By Friday, I was broken. On Saturday, I managed a gentle morning outside, then was glued to the sofa for the rest of the day, in a lot of pain and so exhausted I had to nap. Today I made it out shopping - and slept in the car on the way home.
The most ludicrous thing about this was that I was genuinely shocked at how tired I was. Stunned at how ‘poorly’ my body was handling a busy week. A few years ago, I was going to London most weeks, dashing between meetings, doing regular talks, and I just kept going. But now it seems that my body has discovered rest as a concept, and throws a strop of epic, toddler-like proportions when denied this basic right.
I know my EDS is getting worse. I’m seeing a physio for the first time in years on Tuesday, having finally ‘given in’ and told my GP I was no longer coping with it by myself, providing her with a list of referrals I needed, from physio to orthotics to a new wheelchair assessment. I know I need to accept that this body of mine isn’t able to do what it could even a year ago - but a stubborn part of my brain refuses to countenance this.
So, I have become my own worst enemy, as my exhausted body and pathologically hyperactive brain fight it out to see who can break the other first. There is something particularly cruel about people with a pain and fatigue-oriented condition being more prone to having a hyperactivity disorder. It’s a sick evolutionary quirk at best, but it is my life, and all I can do is try to find some balance (says the girl who specialises in dramatic falls).
That balance starts with remembering that I am indeed disabled. It starts by accepting that I can be proud of being disabled and simultaneously seriously pissed off at a body that seems determined to scupper my plans. Perhaps I should flip the narrative; perhaps I should see my body’s inbuilt limitations as a protective measure against my brain working me to the point of mental and emotional burnout again. Perhaps this pain is telling me something not about the state of my joints, but about the need to remember to stop and smell the roses occasionally.
Either way, it’ll likely be a lot easier if I come to accept that sofa time is not the worst way to spend a Saturday.
(As seen below; Simbastatin, the long haired tabby cat, who rather enjoys my being stuck under an electric blanket)
Currently knitting: a red chunky vest for my Enid Sinclair Halloween costume (#Reviewer2 is to be my Wednesday Addams)
Currently reading: See Me Rolling by Lottie Jackson
Currently cooking: every pumpkin recipe I can get my hands on.
I can relate to this a lot - I spent 35 years not being disabled (although you could probably argue I had a milder form of chronic healthcare issues that I could far more often get away with pushing on through) and then five years ago my physical health totally collapsed and everything changed, and while things have gradually improved from the all time low, I can't just get on and do stuff the way I used to, including losing my career (which arguably has a lot of upsides aside from the financial cost) and having to learn to try and be incredibly patient as I painfully slowly build a new career that has a ton of flexibility and works alongside the unpredictable ups & downs of my health. I think the most frustrating thing is looking "normal" from the outside while dealing with the fallout of doing "normal" things, which people don't see.
A few weeks ago I pushed myself to go to the Barbie movie when I was already quite tired because I really wanted to see it before it left cinemas & I was in the headspace of "I used to jump on a bus, go to town & go to the cinema all the time. It's no big deal." I was broken when I got home & it took me days to recover! Every so often I have moments where convince myself my limitations are all in my head and that I just need to get on & do stuff, forgetting that every time I prove to myself that isn't the case & there's always recovery time after!!!