The other day I was getting on the bus (to ride the three stops from the shop to my house because I was too tired to walk) when the bus driver leapt up and grabbed me because he thought I was falling over. It was quite alarming, because I wasn’t falling over and had no idea what he was doing, but he meant well and it was nice to know that, had I been falling over, he would have been willing to help. After realising his mistake, he then took my card and tagged on for me and waited until I’d sat down before starting off. When I was getting off the bus (three stops later) he looked worried and asked if I had far to walk from there. I didn’t – the bus stop is just around the corner from home – but again, it was nice of him to check (not really sure what he was going to do if I did have far to go though?)
I was thinking about all this later. Part of me was happy to know that there are nice people out there willing to help out someone they feel is in need, but the other part of me felt sad and I wasn’t quite sure why. I, like most people with invisible illnesses, am far more used to the old chestnut: “But you don’t look sick!” Or when they see my crutch: “So what have you done to yourself?” I’m so used to people not believing me, or simply not realising, that it felt really strange to have someone notice I was struggling just by looking at me.
As I’ve got sicker, it’s become far more visible. While I’ve walked with a crutch for a long time, it’s now quite obvious that I really need it. My legs don’t always do what they’re told, and get a bit wonky-donkey when I’m walking. Tremors are hard to hide – in particular the new fun symptom of my head bobbing – and of course rashes, being pale/green and weight-loss tend to be fairly noticeable.
After a few minutes of moping over all this, I realised I didn’t care!
A few people have looked at me strangely when my head starts bobbing, but once I explain that I’m not really emphatically agreeing with them they don’t mention it again. A few days ago, I was stressing about going out to dinner because my tremors were really bad. Then I realised, no-one is going to laugh at me (and if they did, they certainly wouldn’t be the kind of person I want to hang out with!)
Being sick – invisible or not-so-much – is hard, and the majority of people get that. The ones who don’t, either just have no idea and will probably change their tune once they understand a little more about invisible illnesses. The ones who do understand about invisible illnesses and still don’t get it? Well, maybe I just don’t hang out with them :-)
Little Miss Autoimmune