Yes, kids can get it too

I’m going to be honest, I’m awful at writing about myself. I find it awkward and I’m never sure if I’m too whiny, or if it comes across that I’m trying too hard to be light-hearted and just ends up sounding absolutely miserable as a result. I am a worrier by nature, so I of course panicked when I was told that I had developed a disease.

The title is an attempt at being witty about the fact I have JIA, or Juvenile Idiopathic Arthritis. As the name suggests, it comes on when you’re young and tends to stick around for the foreseeable future unless you’re very lucky. I was lucky with finding the right medication to help me out and have a vaguely normal life, if the life of any student can be classified as such.

It started at 13 and, naturally, I (the least athletic person you’ll ever meet) was over the moon at the prospect of having an excuse not to do PE. Hospital appointments let me miss dreaded lessons like maths and science. I was a lot less happy later on when I had to take my GCSEs, but at the time it was all great.

The difficult part was explaining to people why I had to do these things. The title I’ve picked is a response I’ve had to give to many people over time who’ve asked me if arthritis was meant to be “just for old people”. Well, obviously not if I’m standing here telling you I’ve been diagnosed with it. To find another person with JIA is so hard you barely believe there is anyone else and that on your next doctor’s visit they’ll tell you they were wrong and you pain is easily fixable with an operation of some description. Sadly, not the case.

It becomes quite stressful really, as the disease makes its way through your bones and latches onto the joints you actually need. In my case, my shoulder, elbow, knees, ankles and jaw. Thankfully for my aspirations to be a writer, my hands have been spared so far. Being tried on medication after medication while trying to explain to your friends in a disappointed msn message (yeah, remember that?) that you can’t go out because your medication is making you sick or you’re in too much pain can be genuinely awful. I constantly heard from family “Oh, you’re doing so well” and “I can’t believe you’re coping” until I turned up to my grandparents’ house in tears because of the pain it took to walk for 20 minutes. The difficulty comes in explaining just how bad it can get to someone who has probably never experienced that level of daily discomfort.

I recognise now, though, that if I’d sat down with various members of my family and really explained what it felt like, they might have been a bit more sympathetic and stopped telling me to “just go and get on with it”. Anyone who has felt the way I have knows that it just isn’t possible the majority of the time.

It’s really damned painful.

It’s ridiculously uncomfortable.

And I wish I’d realised it’s okay to feel like that.

However, it’s not all doom and gloom. Personally the older you get, the closer you are to being an adult and the faster you just accept what’s happening to your bones, the easier it is to make your life feel normal. I went to Reading Festival when I was sixteen and had the time of my life, though it led to a few days spent sat down. I like wandering around town with my friends and going out drinking and living like teenagers are supposed to, even if I have to take rest days afterwards. For all intents and purposes, unless it becomes a real issue, nobody needs to know that I have “that disease for old people”.

I have to admit, if you’d asked me a year, year and a half a go if I thought I’d be able to cope with moving out and living alone, taking care of my own medication and judging for myself if I’m well enough to go to lectures or not, I probably would have told you to leave me alone in not so polite a way. I’m still fairly shocked. Don’t get me wrong, living on the 10th floor of Halls when the fire alarm goes off (that’s twenty flights of stairs) made me realise why some people might resort to murder. However, I’m quite happy with life as it is. 

By Daisy B

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