I don’t consider myself to be disabled in the conventional sense in any way, shape or form. But I do have a chronic illness that means I get daily reminders of how I’m not quite as able-bodied as I want to be.
I suffer from ulcerative colitis (UC), which is an inflammatory bowel disease, so I get inflammation and ulcers along my digestive tract. I consider myself quite lucky because, whilst in the past, I have been on daily medication, for the most part, my UC can be controlled through diet nowadays. I think the clearest memory I have from my childhood, when I realised that I wasn’t quite right, was when I was at home and I was having a flare-up. I didn’t know what one was then, but for me, it’s essentially extremely painful cramps that can often feel as if someone has made me swallow sharp objects and I can feel them pulling on my insides. My mum asked me what was wrong and I sort of brushed it off and just said, “Oh, it’s okay, I’ve just got that thing you get when you get that really sharp pain in your tummy”, and I just remember my mum looking at me and me realising, ah, right, you don’t know about that sharp pain people get in their tummy. So I suppose, whilst I have other memories of doctors’ visits and blood tests and trial running different diets to see if I was intolerant or allergic to different things, that’s my earliest memory that’s so clear and sharp and defining because I was, at that moment, categorically different.
I struggled for a long time in my teenage years after being diagnosed to get a hold of what it was that I had. The likelihood is that it will get worse as I get older and I’ll probably have to have a colectomy - part of my colon will be removed and I’ll be pooping straight into a bag. Whilst that idea doesn’t thrill me, it doesn’t bother me like it used to. After you’ve sh*t your pants and vomited blood often enough, you just get used to that kind of other-ness.
Nowadays, the thing I find hardest is when I physically can’t do what other people can. I’m very outdoorsy and I pride myself in being a relatively healthy human. But there are weeks when I feel so sick and chronically tired that I can hardly eat anything which isn’t banana and toast. I have to remind myself that getting out of bed is a genuine achievement even though I had so much planned for the day. I’m stubborn, so not being able to burn the candle at both ends bothers me. I don’t like to slow down and watch my friends gain ground, metaphorically or literally, because I know that if it wasn’t for my UC, I’d be right there next to them. But actually, I am lucky because it could be infinitely worse. On a daily basis, I have to remind myself that the things I deal with aren’t normal, and if I have to remind myself of that, they can’t really be that bad in the first place. That’s what I like to think, at least.