“Being positive is everything... I have arthritis but it doesn’t have to change who I am!”
My name is Chloe and I am 14 years old. I was diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was 12. It had taken nearly 2 years for the pain I was struggling with to be given a name and for me to finally have a diagnosis of what was wrong.
I had been told it was growing pains by the doctors I saw in Bermuda, where we used to live. This continued when we moved back to the UK. It felt like no one would listen to me and my parents. Nobody understood – that was horrible.
One day I came back from my aerial gymnastics class and told my parents that my elbow was really painful. It wouldn't straighten and looked strange like it was twisted around. It felt warm and hurt. I was frightened because it looked like it could be permanently damaged and I didn’t want to have to stop aerial gymnastics.
The GP I saw the next day knew what it was. I had a blood test too*. They confirmed it was JIA. I was so relieved that a doctor had finally listened to me and I could get some help for it all. Having him tell me it wasn’t all in my head and there was something wrong, even if I didn’t fully understand it, was such a relief.
I was then seen at my local hospital; the Southampton Children’s Hospital JIA team. They were amazing and I was given a steroid injection to make my elbow better and my condition was explained to me. Over the next year I had flare-ups in my fingers, toes, knees and my neck hurt all the time. Ibuprofen helped but it wasn’t enough. I had a scan at Southampton hospital (where I now go for physio, treatment, check ups and everything else I need) which showed which parts of my body had active arthritis. So the treatment plan was to have steroid injections under general anaesthetic. I was told I would have 9 injections. After I woke up from the general anaesthetic, I was told I had needed 15 steroid injections!
I was then given a more specific diagnosis of polyarticular JIA (rheumatoid factor positive). I didn’t understand what that meant at first, but we were advised to start on methotrexate injections straight away. I was a bit scared at first and they made me feel very sick but it soon settled down and I got used to them. I get to have hot chocolate, a cuddle with our puppy and a movie after each injection which helps!! (We have two dogs who really help me through the difficult days). Methotrexate worked for about a year. Last Christmas I got really ill with a bladder infection which wouldn’t get better even with multiple antibiotics and then my arthritis became even worse than before. I had to go onto steroids and then after that I started on Adalimumab injections, on top of methotrexate, and told I will need them for at least two years. I am still getting used to the ‘mab’ and the injections do hurt, but they have calmed my arthritis right down. In the last few months, I have been able to do things that have for a long time been too painful and hard for me to do. I have completed a two-day intense hike for the Duke of Edinburgh bronze award and I am back at my aerial gymnastics classes performing on the hoop and the silks which I love.
Arthritis can be painful and challenging and I have had times when I feel really sad about it or people haven’t understood. One time, my friends told me I was too slow and they needed to rush off without me and that was hurtful because I can’t go as fast as they can if I am in pain or the medication is making me feel a bit foggy. My Head of Year gave me the chance to explain what arthritis is to my class and that helped a lot. Many people think it means you just get a bit sore and nothing more but that just isn’t the case. I have to be more careful with my health, make sure I rest, and take medication to help the side effects of my arthritis drugs. I know that I won’t let it stop me doing what I want to do though. I will continue with aerial gymnastics, Duke of Edinburgh (I am starting Silver!) and spending time with my friends. It hurt to play my flute for a while too but I just passed my grade 5 with merit so it didn’t stop me there either. I want to just be able to be myself and do what makes me happy. For anyone who is diagnosed with JIA, you don’t have to let it stop you or get you down. It can be tough at times but it will be ok! The Little Box of Hope was so lovely to receive and my mum and I did a big fundraiser this month to raise money for Juvenile Arthritis Research and create some awareness that young people get arthritis too.
Being positive is everything, and the team at Southampton Children’s Hospital have looked after me (and my parents who need it too!) brilliantly. I am now in medical remission and I really hope it stays that way. I have arthritis but it doesn’t have to change who I am!
*There is no single test that can diagnose JIA. It is a diagnosis by process of elimination and with an examination of the joints. However, a small proportion of children and young people with JIA are RF positive (Rheumatoid Factor positive) and this can be detected via a blood test.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org