Finally… Diagnosis

Today I found out I have Ankylosing Spondylitis. Arthritis in my spine.

I am 27 and I have arthritis. It’s not news to me that young people can get arthritis, I have several friends with it. It wasn’t even news to me that I might have it because I got the tests done almost two weeks ago and the doctor said then it was pretty likely.

But I’m still kind of in shock. All this time, I’ve been clinging to the hope – the belief, actually – that I was going to “get well” eventually. If I just tried hard enough, I was going to make a full recovery and my life would go back to what it used to be. Now I know for certain that that’s not going to happen.

You have to have a certain gene (HLA-B27) for Ankylosing Spondylitis to occur, and it needs an “event” in your immune system to trigger it. It’s an autoimmune disorder, where your system keeps misidentifying good cells as bad ones and attacking them. I may still have got it if I hadn’t got sick in the first place. I may not have. I can’t spend too much time thinking about that because it’s just too upsetting and it doesn’t change anything. I have it. It’s not going away.

In some ways… it’s a relief. It’s a relief to finally know, after two years of illness. 16 months since I was in hospital. I finally have a name for the pain I’m in all the goddamn time. I finally have something to say when people ask me what’s wrong with me, rather than just “my immune system doesn’t work… well, it kind of works more than it should? like it seems to kind of hate me? my own body hates itself?”

That’s all I have for now. I’m… processing what this means and where I go next and how I feel about it and… just what to do.

Thanks for messages of support and love. They mean a lot.

S.

2 Replies to “Finally… Diagnosis”

  1. Ruth

    I was diagnosed with that exact condition in 1997 when I was 35. The good news is that I’ve virtually got it under control in the intervening years, with a combination of cider vinegar and a fairly vigorous walking/running regime each day. I get the odd twinge from it, but it in no way prevents me from living a very active life. I guess there are varying degrees of severity, and it certainly sounds like your having far more ill effects than I’ve had, but it may not stay as bad in the long run. I certainly hope you will get some relief from it anyway.

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