I was just 13 when I started getting a range of symptoms including rashes, fatigue, joint pain and stiffness that baffled doctors and were mostly attributed to being post-viral. I then spent the next two years being tested for a range of conditions as my symptoms continued to worsen.
I was passionate about drama and dance and my symptoms were really starting to impact on my ability to do what I loved – be on stage.
It seemed like a long time, but actually given the rarity of my condition – Still’s Disease – it was diagnosed relatively quickly. It only occurs in about 1-4 people in a million! Although it was initially called Juvenile Inflammatory Arthritis due to my age it had all the typical symptoms of Adult Onset Still’s Disease. These include a salmon pink rash, elevated temperatures and a sore throat – flu-like symptoms but with incredible fatigue and joint and muscle pain. It has always been particularly noticeable in my wrist, which at times have been very weak, sometimes feeling like someone has snapped them.
I carried on trying to fulfil my dreams of dancing for another couple of years, not wanting to give in and admit it wasn’t going to happen for me. I now know I pushed myself too much on occasions, both to fit in socially and be on stage. I had an audition for a girl band and kept myself going through all the rehearsals, but I had to be cut out of my dress one night because I literally couldn’t move after a show. It was very sad and hard for me to finally give up that hope, I still think that there might be an opportunity one day and do the odd class or activity when I can.
I also found my teenage years very uncomfortable due to the visual signs of Stills Disease, having spent hot summers covered from head to toe to avoid displaying my rash. The steroids I was on also caused moon face so that didn’t help either.
I hoped that diagnosis would draw a line under everything; they knew what it was, I could get a treatment, and everything would be better. It wasn’t as simple as that – I spent a further two years working through different medications, some of which had horrible side-effects affecting my mental health, insomnia, mood swings, depression. My condition is complicated by the fact I need different medications to help with the flu-like symptoms on one side and the inflamed joints and muscle pain on the other. There is no one treatment that keeps both in check. My symptoms continued to worsen, at times things were so bad I couldn’t walk, use my hands, drink a glass of water.
I have the chronic form of Still’s Disease which means it never really goes away, or can be completely controlled by medication, and I have to deal with flares which often occur at times of stress or if I have pushed myself too much. I have steroid injections when things get really bad, although I have to be wary of the impact these have as it takes things a while to settle afterwards and the side-effects of these to settle. The medication has been of great help but with Still’s the erosion of my joints is difficult to stop.
I am always having to think about how much I can do, and when to say no, or to plan for downtime either before or after an event or activity I really want to do.
After realising I could no longer be a dancer I drifted through a number of different jobs in retail and offices but fatigue of commuting was hard and I was often very tired. I then decided on pursuing a career in personal training. My friends thought I was mad at first, how would I be able to lift weights when there were days I couldn’t hold a glass. But I kept on. I liked that it was flexible job, so I can plan my schedule around what works for me. I am helping myself keep fit and meeting people and changing their lives too. I have now been doing this for 10 years and find it so fulfilling, especially when I am able to help others with arthritis on their journey to keeping active and minimising pain. I have noted how weight training has helped not just myself but others too.
It has taken time, but I have discovered that keeping active is really important, but I need balance and to know when to stop and when to rest. If there is one piece of advice I’d give anyone with arthritis it is “It’s okay to say no”.
I know my strength and capacity, when I am weak and achy I know that’s enough. I love tennis, but I know I get too competitive and can push myself too far. I take time out to do simple things like cook or watch a film.
My condition has also had a profound effect on my social life and relationships. Earlier in life I found it really hard to ask for help and felt like a burden on others. I had relationships that fizzled out because of this. I am so lucky to have now met someone kind and understanding. He is helpful and supports me through good and bad days, understand my anxieties and how the medications impact me too. The next big challenge we have to face together is our desire to have a child. I have spoken with my specialists and there is a lot to consider; my fertility, the medication, should I come off it during pregnancy, what impacts that may have. As my condition is so rare, it is very difficult to be able to draw on medical research for answers to these questions there are just so few people who have gone before me. I am also thinking about what my limitations might be physically interacting with my child when they are here.
I don’t doubt that life with Still’s Disease will continue to challenge me long into the future, but I have learnt to use the support around me, plan and pace so I can embrace these challenges with all these tools at hand.