THE BLOG

What People Say When They Realise I'm Not Going To Get Better, And What I Want To Say In Return (But Rarely Do)

03/03/2017 13:40

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.

2) You're So Good About It. This means people think I don't complain too much about it. That's an odd one. I could be hit at any moment, for no discernible reason, by a wave of pain so intense it causes my whole body to go into shock and shake uncontrollably. You think it's a good thing that I don't talk about that? People have a category for suffering in silence. Subtext: I don't want to think about your pain, so please don't talk about it. Tough. I'm going to. Move along if you don't want to know.

3) Have You Tried Changing Your Diet/Getting More Exercise/Chiriopracty ... ? No, of course not. In the 17+ years since this constant companion, it hasn't occurred to me or to any of the 10-20 doctors who have treated me to change my diet or get more exercise or sleep differently or ... What? It worked for you/whoever's stomach complaint? OK. You're clearly a medical genius.

4) I'm So Sorry. Thank you. That helps.

5) Is There Anything I Can Do? The answer may be 'no, but thanks', or it may be 'yes, as long as you don't mind sweary text messages when I'm in agony' or 'please keep inviting me to social stuff even if I keep cancelling at the last minute' or 'you could be on hand to move stuff I can't move some days'. I don't know - as long as you're able to follow through, or honest if you can't, then that's great. Just don't offer to be nice, to make yourself feel better. The worst are the people who offer help, help, then get bored when I still need the same thing five years later and give up. Offer to help, if you can help for as long as you know me.

6) What Time Does The Football Start? Sometimes I want to talk about it. Sometimes I don't. Sometimes I just want to do normal things. You need to be ready for both if you're going to stick around.

7) Don't Let Yourself Be Defined By Your Illness. The only people who say this are usually relatively healthy. Of course it defines me. Not all of me. But a large part of me. Being in pain every day for 17 years does define a part of me.

8) Here's A Card, Or Something Else Nice. Actually, with chronic illnesses, people tend not to do that.

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