and oh so tired of being sick

on how much i love my disabled friends

i was dead poorly here tbf

The other day I met up with my friend Becky, which is always a chaotic and cathartic experience. Becky and I have some of the same health problems, so we tend to talk about them at length: medications, tips, doctors who should be sued. These meetings often come after months of not talking at all because one or both of us has been cut off from the world, unable to talk about much. That makes these meetings more precious, but what makes them the most precious of all is just feeling understood.

We talked about two things that stuck with me: grief and shame. Some chronically ill people do not feel any shame about sharing the reality of their day-to-day life. They are happy to be relatable, to show vulnerability, to be human. I respect that, but I cannot do it.

This year has been a saga that I won’t bore you with. COVID led to more serious flare-ups led to infections led to COVID led to fatigue led to a summer spent partly in bed or at the doctor, having yet more blood drawn. I got a new diagnosis that was helpful, that allowed me to pursue treatments that have made it possible to be out of bed, away from my home. I am building up my strength and blood volume every day. I just got back from California, where I was active most of the time and, with the right care, I managed to feel healthy. I’m doing better.

I can only talk about what I’ve been through now because I am doing better. Becky and I talked a lot about internalised ableism, about the need to seem well even when I am anything but. I feel great shame when my body doesn’t do what it needs to, when it feels like everything I eat or feel or do just makes it rebel further. I do not want to be seen as sick, even though I always am, but I do want my able-bodied friends to understand that I am not always well. They do, and they are kind, there is something special about relating to people who get it intimately. 

When I was 20 I made friends with one of the funniest people I have ever met. Emma had Cystic Fibrosis, and she taught me a lot about how to connect to disabled people, how to maintain a friendship with someone who can’t always be present. Most of our conversations took place over the internet, because shortly after we met in real life she was hospitalised. I learned how to not be squeamish, how to ask questions and accept the answers, how to laugh. That it was OK to laugh–some sad, horrible realities can also be very funny. We did not get to spend as much time together as we wanted, because she died a few months later. I wish that we had more time, but I am grateful that I got to know her. I miss her.

The friends I have who are disabled or chronically ill are some of my favourite ones, even if I haven’t known them for very long. We connect quickly and hard, bonding over bands or crushes or whatever but also over medications and treatments and pet peeves and bad doctors. There’s a shared language, a way of connecting and commiserating that never comes close to “poor you”. When I share that I have a dent in my head from a botched procedure, or that I can’t stand without my BPM doubling and nearly passing out, or that I can’t find a migraine treatment my body can tolerate, I do not want poor you. I want someone I can laugh with, someone who might even suggest an alternative. We are very educated about our own bodies, often more so than our doctors, and we have had to learn a lot about alternatives.

I suppose I am saying that I hate that I am unwell. I hate that I am hit by flare-ups that disable me. I hate working through the complexities of finding medications, treatments, doctors. It’s a full time job, and one that makes it impossible to have any kind of job. I love the euphoria of finding stuff that works, doctors who understand and see the body as a whole, and I have had that more lately. I do not like that I am sick, and I don’t like who I am when I am unable to be out in the world. I don’t want to be relatable. I want to be well.

But: I love relating to my disabled friends. I love them, so much, and I love sharing the experiences we have that are sometimes the same and often very different. I love the disabled and chronically ill communities, I love working with them, I love seeing us make strides. I love that many people have a voice, thanks to the internet, who once did not.

All I can think about often is disability, so I often don’t have much to say to the outside world at all. I hate that when I want to write about it I am often rejected: too niche, too unsexy, too boring. I disagree! Disability is very common, and it is something that can happen to anyone at anytime. It is very interesting, and complex, and essential to understand. As far as unsexy goes, my disabled friends are some of the sexiest people I have ever met, and I wouldn’t change our unique connection for anything.

I only wish we could hang out more.

Please subscribe to my dear friend Lou’s Substack, where she writes about disability, accessibility and lots more so very eloquently. Best fiver I spend every month.