What People Say When They Realise I’m Not Going To Get Better, And What I Want To Say In Return (But Rarely Do)
I live with the debilitating and incurable Ankylosing Spondylitis. It’s a chronic disease which means it’s not going anywhere, isn’t going to kill me but does make life very, very hard. My pain can, on a very bad day, reach the level of childbirth without the obvious prospect of new life at the end of it – just a temporary remission of pain until the next wave breaks in a few days or weeks or months. It’s a bastard of a disease, and many people haven’t heard of it.
Usually, when I first tell people about it and they’ve asked a few questions to educate themselves, the responses fit neatly into one of a handful of categories.
1) You’re So Brave. I’m not brave. There’s nothing brave about me. I’ve considered killing myself to end the pain; some days I really do wish I had cancer because at least that would have an endpoint. Brave people have a choice about what they do. I don’t. I have to get on with life otherwise I wouldn’t have a wife, children, job, life. I’m not brave. But people have a category for the brave soldier, gamely getting on with it, face like flint.