Juvenile idiopathic arthritis by Emily, 17

Emily, 17, shares her experience of being diagnosed with juvenile idiopathic arthritis shortly before her GCSE exams. 

"It all started with a pain in my knee. Originally I thought that I had pulled a muscle at the gym, so I stopped exercising for a couple of weeks to try to recover. But the pain just got worse and worse, even to the point where even wearing jeans was too much to bear because they were tight.

"We went to the doctors and they thought I had the flu because I’d started having aches and pains in my hands. But the pain progressed to the point where I couldn’t walk down stairs or squeeze the paint tubes in my art exam.

"Both my family and I knew that something was clearly wrong. It obviously wasn’t a virus anymore, so we had to be a bit more persistent.

Tests and diagnosis

"At my next doctor’s appointment they looked at my joints and tested my blood to look for the rheumatoid factor. They found my level concerning and that result, alongside the physical symptoms, meant there was only one diagnosis that would fit.

"I was told that I had juvenile idiopathic arthritis (JIA) a week before my GCSE exams. I was relieved to be able to put a name to the pain I’d been feeling, but it was still devastating. I felt like my whole life had just been turned upside down. The thought of not being able to do things, like write an exam paper, was really just something that I couldn’t comprehend.

"In fact, the timing was actually lucky – if it had been any later, I would have had to write my exams myself which would have been very difficult with the pain that I was feeling. I used a scribe for two exams that were marked only by exam; the others had coursework modules that I’d already completed. For these subjects, they were able to give me my predicted grades as I had to start taking medicine straight away and it made me really ill.

"Eventually I was more relieved that, now I had my diagnosis, there was something that could be done about the pain, rather than just being in the dark about what was happening.

Treatment and check-ups

"At the start, my hospital appointments were quite frequent but now, the time between my check-ups increases depending on how I’m doing. Every time I change medication, I have to go back to check everything’s working correctly.

"It’s been a few years since I was diagnosed now, and well as the medicine I have to take, I try to do extra things such as swimming and weights to help loosen my joints. I also try to eat healthy and avoid fast food. How much I do depends on how I’m feeling at the time but overall, I definitely feel better for doing exercise. It gives me an opportunity to use my hands and keep them functioning, especially as I can’t write anymore.

"At college, all my exams are essay-based. I have a notebook laptop that I take every day to use in class – I can print my notes off and file them away. I’m hoping to go to university in the autumn to read English and Art History - I’ve been accepted to all the universities I applied to, so I just need to get through my exams.

Looking ahead

"Being diagnosed with arthritis was difficult at first, but as time goes on, you adapt. You learn your limits and how to work around them. Arthritis shouldn’t stop you from doing everything you want to do – it just means that you might have to change a little in order to look after your body."

Medical Conditions