So, it was my sister's wedding at the weekend. Everything went really well and she looked absolutely stunning. It was a beautiful day, everyone had a fabulous time, and it was fantastic to see her looking so happy.
I was having a really bad pain day though. I needed my stick, which I'd really been hoping to avoid, and the TENS machine, and I even had to have the bouquet tied to the stick and my hand, because it was too heavy for me to carry. I had to keep sitting down during the photos and by the evening, I couldn't move. It all made me feel pretty self-conscious, but I figured all eyes would be on my sister, so no-one would be paying much attention to me.
Most of the people at the wedding I didn't know, but there were a few that I'd met before and that knew about my situation, as well as some family friends who'd heard about it. I couldn't believe it though, when they started coming up to me, acting all shocked, asking me what I had done to myself this time and seeming to not quite believe me when I said it was still the same problem. The fact that I'd told them all about it before seemed to completely pass them by! It's bad enough having to explain all this the first time, round, without having to go over it again and again, especially with people looking at you like you're some kind of drama queen! Even worse though, was the pitying looks they were giving me, and the way they kept saying things like 'but you're so young!'. My godfather even started crying. It made me want to scream! I know it must be really hard to see someone struggling and in pain - and there's no way I can hide it when it's like that - but the last thing I need is people pitying me!
It's shitty situation, obviously, but pity doesn't help. Be sympathetic by all means, offer to help if there's something you can to do make things easier - let's face it, I need all the help I can get! - but please, if you're going to feel sorry for me, at least wait till I've left the room! Seeing it written all over your face doesn't make me feel any better, you know. It doesn't make the pain or the limitations any easier to bear. It just makes me feel worse, because I can see all the things I used to do, the person I used to be, reflected back in your eyes. And it kills me! You think it upsets you to see me like this - how do you think it makes me feel? I don't need any extra reminders of how much my life has changed - I get that every time I try to move! What I need from you is just to remember that underneath all this, I'm still the same person. Look beyond the sling, the walking stick, the TENS machine and the medication, and see that it's still Me.
I don't need platitudes. I don't need to hear that I'm still young. And it doesn't help for someone who has no clue what it's like, to tell me that I 'just have to stay positive' - how could they possibly know what I have to do, when they've never been there themselves, and all they've seen of my life is a tiny snapshot?
I know it's probably that they just don't know what to say. I guess disability makes people uncomfortable and they try to cover it. They feel helpless and want to say something - anything - to try and make it better. But I have many friends who manage to be there for me and help me in all sorts of ways, without making me feel like they pity me. I know they care, I know they worry, I know they're sympathetic, but they never make me feel like I'm anything less than I was before the accident. It's taken me a long time to learn to accept help and to understand that people don't resent having to do things for me, they don't think I'm being lazy or difficult, and if they've offered to help, it's because they care, so it's OK to accept. But I don't think I'm ever going to get used to feeling pitied. And to be honest, I don't want to.