There’s lots of things to come to terms with when you are disabled. For me, until I was nearly 15 years old, I was an active, healthy person. The sudden change when I got ill took more than a little getting used to, especially as I wasn’t diagnosed correctly for some time. After that, I had to get my head around the fact that this wasn’t temporary, but likely to be around for the foreseeable future. I had to accept that when other people my age were out partying (I’m thinking in particular of my university years), I would be at home tucked up in bed. And when I say ‘home’, I mean ‘with my parents’ because I needed the support of my family in order to complete my degree. You know there’s something a bit skewed about your late teens when you are invariably asleep before your mum and dad – I mean, it’s just not natural, is it?
Sixteen years down the line, I’ve come to terms with it. Well, mostly. Of course I have days of sheer frustration and anger at my body for not doing the things that most people take for granted, but basically chronic illness is part of my life, a bit like an annoying relation: I can’t get rid of it, so I just have to accept it as best I can and celebrate all the things I can do. Some people have interfering mothers-in-law; I have an interfering disability. Amongst other things, I need a lot of sleep, and life is too short to spend the time I do have awake fretting over things that can’t be changed.
The one thing, though, that in all that time I still haven’t quite got my head around, is what response I should give to the (all too often heard) comment, “But you don’t look sick.” Seriously, what is one supposed to say to that? I mean, it’s true: if you meet me sitting down on a park bench, I don’t come with a big sticker across my head saying THIS PERSON IS DISABLED. I don’t have blue and yellow spots as ‘proof’ that I’m ill. But it does baffle me as to why anyone would make that remark in the first place.
Sometimes it seems as if it’s supposed to be a ‘compliment’, along the same lines as “ooh, so-and-so’s been terribly brave about her divorce. You’d never think to look at her that her husband ran off with the woman from across the road.” Should I respond by saying something like “Oh good, it’s a relief to know that I don’t look as awful as I feel”?
More often, though, it feels like there’s an accusatory note to the comment. It’s like the person thinks I’m cheating them by looking healthy and secretly being disabled all the time. After all, you need to know who these dubious disabled types are, you know: you might catch something if you spend too much time around them. I feel as if they’re expecting me to apologise for my sneakiness in being ill. “Sorry, should I have worn a badge so you knew who to avoid?”
And there’s the final group of people who tell you that you don’t look ill. Who apparently linger under the bizarre assumption that illness and disability is something that they can immediately spot, and therefore I must be lying to them with my spurious claims of disability. If I don’t correspond to their idea of illness or disability, I can’t possibly be ill. To them, I am always tempted to say “Ooh wow! You know, you’re right – I’m not disabled after all. Fancy that! I’m so glad you pointed it out…”
The funny thing is, of course, that all these people, were they to meet me when I’m in a wheelchair, wouldn’t even question the validity of my disability. I could have the same clothes, the same hair, the same lack-of-make-up, but I would have turned into A Disabled Person. It’s like a magic trick, really – take a healthy person, just add one wheelchair, and abracadabra, there you have it: someone with disabilities. A round of applause from the crowd, please!
In the meantime, anyone who’s worked out how to answer the “you don’t look ill” comment – or, even better, anyone who’s said it! – do share. I’ve had sixteen years of searching for a response, and any suggestions would be most welcome…