I wanted to talk about the emotional effect on being diagnosed and living with AS. I’ve had a couple of prompts over the last couple of days that have encouraged me to do this sooner rather than later.
Firstly, Karen wrote a fantastic post about how coming to terms with AS can be a lot like the grief process over on the Walk Your AS Off blog. I’ve also seen a few posts in the Facebook groups I belong to by people who are feeling at the bottom. Either because they were struggling to be diagnosed, get the right treatment, or just be able to function in the middle of a flare.
I also wanted to find a suitable post for this image from Instagram user Spondymom. I love it as the definition of AS can seem quite clinical and sterile, whereas the effects are definitely more noticeable. So let’s look at the definition and what it really means:
Chronic – This means that it’s a long term condition. In fact, it’s lifelong. If you’re diagnosed with AS there is no cure. Symptoms can be managed to a greater or lesser degree, but you will never be cured.
Degenerative – Your immune system is going to continue to attack your spine. You’ll experience fusion or other damage with every flare. You’ll walk funny to compensate for the pain (if I say the word penguin I’m sure that my fellow Ankylosaurs will smile!) You’ll stoop or hunch to look at the floor so that you don’t jar your body. And this will make it worse – so you walk funnier, stoop deeper, until your next costume for a Christmas party is clearly going to be a candy cane.
Systemic – AS primarily attacks the lower spine to begin with, but when it gets bored it moves and spreads. But it’s not just AS, many people with AS experience other Rheumatological conditions, Uveitis/Iritis, Chröns, Lupus, RA, IBS (inflammatory), IBS (irritable), Celiac, PA the list goes on. I’m lucky, I just have AS. But every single part of the body can be affected, even without all the others. Random shooting pain up back, down the leg, in the buttock, or my personal favourite – chest pains.
Then there’s the issue of the new body shape, the kyphosis that I showed you compresses the chest cavity, reducing lung capacity and squishing your internal organs. Exercise is difficult, even though moving is vital so it’s easy to struggle with weight issues.
Autoimmune – I’ve already discussed this back when I did my first post, and also when I covered Anti-TNF treatments. But suffice to say, your body is attacking itself, like a Geordie with a horse when Sunderland win. It’s tiring, constantly. Your body is working overtime to get rid of the foreign body that’s invading it (you know, that horrible virus – the spine!).
Arthritic – AS is one of the Arthritis family of diseases, not the old age sort, the autoimmune sort, like Rheumatoid, Psioratic and the like. Needless to say – it hurts!
So, you’ve had the diagnosis and you’ve figured out what it means. That’s pretty depressing. And you’ll be forgiven if you want to curl up into a ball for a while and cry. But I’m here to remind you not to do it for too long, remember – you have to move. So get up and look at yourself in the mirror for a minute.
Do you see that face looking back at you? That’s exactly the same face that has been looking back at you for years while you’ve struggled through the pain not even having a name for it. That face is pretty damned strong. And that face is beautiful (or handsome, whichever you prefer). Do you know why I think that? Because I know what that face has hidden for so long, how many nights out, parties, meals and lunch meetings that face has sat through, despite being tired, in pain and just wanting to cry/go home or both.
You’ve lived through the worst of it. In fact you’ve done more than lived, you’ve built a life, have friends and family who love you as much as your immune system doesn’t. You’re amazing and I have so much respect for you getting this far. But now you have your diagnosis. You officially have a disability. But that name hasn’t changed who you are, although it may affect what you do in your free time (I’d recommend getting rid of high impact sports, and if you’re a self-obsessed narcissist why not start a blog!?) You’re still that amazing and strong person.
You have a diagnosis though, so you don’t need to be wondering what’s happening anymore. Get the treatment started ASAP and don’t forget to move. If you can get a Physio & Hydrotherapy then I can highly recommend it. Maybe you want to start your own Walk Your AS Off event?
But just remember, it does get better.