Don’t judge my ups and downs

I want to address an extremely worrying lack of understanding amongst the general public about how sickness and disability work. This tweet is typical of the problem. (This is not an attack on the person that tweeted it, I just want to address the perception so please leave her alone.)

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Sickness and disability can be immensely variable.  I can’t speak for all disabilities, but I can talk about my own. I have good days and bad days. Actually, I have good and bad minutes, hours, days, weeks, months and years. I can have bad patches within bad patches. Basically, my health varies to an incredible degree, and what I do at any point is no indication at all of what I can do at another point.

Some days I need a walking stick. Some days (most of them at the moment) I need a wheelchair. Some days, I can walk unaided. Some (rare) days I can run up the stairs.

When it comes to events, though, I take no chances. If I had to attend a football match like the quote above was talking about, it would be wheelchair all the way. (I hate football, but run with it for the example!) The important thing to realise is that I might start out able to walk, maybe even unaided, but I would still have to be in the wheelchair on arrival at the game, because otherwise I wouldn’t have it with me later. By the end of something like that, I would probably be barely able to keep my head upright while sitting in the chair.

A few years ago I attended the recording of a TV show in London. The two hours of travelling was OK, but when we arrived I desperately needed to sit down. We had turned up an hour or so early as instructed, but, horror, we had to queue for that whole hour. We had travelled by motorbike and I had no mobility aids with me because I was relatively well at that point, but that queue was hell. I was in agonising pain by the end of it. Had we just been walking around a bit, I would have been fine but it was the standing in one place that hurt me.

And so, I hope you can see the issue here. It is perfectly possible for me to be in a wheelchair one day, and then strolling across the town centre the next time you see me. And for a big event, I will be in the wheelchair anyway, not for any special treatment, but because if I don’t set out in the wheelchair, I will end up being carried home or leaving in an ambulance called by worried people when I collapse. The point is, YOU can’t judge. You have no idea how my body copes with each situation.

Note: comments that “We know you’re not faking it but the real cheats spoil it for everyone” will be deleted.