How anxiety tries to rule me

First, a little backstory about my back pain. When I was a late teenager I started to experience some back pains. My leg would pull because of lower back pain or it would just feel sore most of the times. It wasn’t bad, but it was there. Initially things like “it runs in the family”, and “you must have been sitting incorrectly” were said and they couldn’t be more correct.

I’ve tried to watch my sitting, I’ve tried physiotherapy, all with the idea that it was something that could be dealt with easily. Until 2012. I was on holiday in the Netherlands when I started to have a massive headache. Over the course of the day, the headache became so intense that I needed to leave a party to go home and sleep. When I woke up I had a flaring red eye, and for some reason, I thought this wasn’t enough to go to the hospital with.

Six days later I went to the hospital, back in the UK when my eye was obviously still red. It was an aggressive redness, nothing like a common pink eye or anything. It made my eye tear but mostly it felt like there was sand inside. I thought that must be it, there must be something irritating. I went to the local A&E and they referred me to the eye clinic who told me that it was something called non-traumatic Iritis. I was told I should’ve come immediately, and not, after six days. They told me that I could lose some sight quality by waiting so long, but they were going to try to minimise it. They did some other tests and it turned out I had a genetic autoinflammatory condition called Ankylosing Spondylitis.

I was put on a major course of steroid drops and was told that it would probably take a while, since, you know, I waited for so long. Of course, it didn’t work, even a straight injection in the eye didn’t do the trick (which, wasn’t actually that bad as it sounds). After almost a year on steroid drops the pressure in my eye was too high and it could cause glaucomas (permanent loss of sight basically). So, I was put on a biologic drug called Infliximab, which is an immunosuppressant. Every two months I went to the hospital to sit on an intravenous drip for a few hours keeping my immune system down so that my Iritis could be resolved.

After two years, it did. There was no more Iritis, and I was taken off the Infliximab. Finally. After that, I went to the rheumatologist and since then I have been doing daily flexibility exercises and have gone to a physiotherapist that specialises in this condition. I’ve had Iritis once more after that, but obviously, it was resolved a lot faster if you actually go to the A&E immediately. Fortunately.

However, all this isn’t at all that bad compared to what AnkySpon (easier to type) did to me without my knowing it. The thing that bothered my life the most is actually not the back pain itself, but the multitude of other things going on. For example, my chest muscles get inflamed a lot, which gives me a sort of “strapped in” feeling, like a very tight car safety belt. This alone has caused me to go to A&E a lot because I was thinking I was having a heart attack. Or having irritable bowel syndrome (IBS) that makes you go to the toilet, and feel really ill after you have eaten something you body triggers too.

All in all, this has caused a big case of health anxiety. And it’s something I have a bit more under control now, but still is there every day. “What is this feeling, am I going to faint?”, or classics like “I don’t feel well, I think I’m going to be sick.”, and “Am I having a heart attack or is this AnkySpon?”. All of these things run through my mind on a weekly basis. And this is for me the biggest issue about AnkySpon I have to live with. It’s the almost constant anxiety that something terrible is about to happen.

The back pain? It’s not great, but I have it very mildly (fortunately), so I’m not as debilitated as some others on the same condition (and believe me, it can be debilitating). And with times you have flare-ups that make things a bit harder for a few weeks. But the anxiety, that ultimately rules my life. The constant worry that for some reason I’m unable to turn off.

Fortunately, I have a very supporting partner, who’s there for me thick and thin, and who understands that my worries are an effect on something physical, and not just being worried about everything. Mental health is a serious thing, and it’s often misunderstood, but I think the majority of people will have some sort of thing they need to cope with. Wouldn’t it be great if we could just talk about it, without prejudice? In the end, we all just want to live, and living with anxiety is a lot less bad if you have something you can share it with who understands.