Real life I look fine from the outside Simon Stones, 23, was diagnosed with juvenile idiopathic arthritis when he was three. Here, he talks about his early life, and how hes using his experience to help others intErviEW: Wendy davies M y diagnosis with juvenile idiopathic arthritis (JIA) when I was three was quick compared to some people, and was facilitated by my mother, who has lupus. When I was about two, she noticed some changes in my joints one finger and one toe, specifically, started to look a bitfunny in shape. Shetook me to see her consultant, who said Ishould be referred to a paediatric rheumatologist at the Royal Manchester Childrens Hospital. They did a blood test and diagnosed mewith JIA. I had some difficulties at school, including sitting on the floor and crossing my legs in assembly. I got tonsillitis fairly regularly, which went to my joints, so Id be stuck in bed feeling really poorly. I kept flaring badly, so I was put on methotrexate, but this gave me really bad side-effects, particularly nausea and sickness. I took quite a bit of time off school, as I needed to go to the hospital at least once a week for various appointments, as well as physio and hydrotherapy. By the Thursday or Friday of each week, I was struggling to get out of bed and into school. It was really isolating at times, as I was viewed as the different child, or the one that gets special treatment such as getting to sit on a chair in assemblies, instead of sitting on the floor. simons top tips find out more Working things out I was very lucky at my primary school, as the headteacher was very understanding. Football and rugby were out of bounds, but my PE teachers thought of ways to get me involved, such as asking me to film a match or write an article. However, I encountered problems when I got to secondary school, as lessons were held in tower blocks that were four floors tall. It was a nightmare trying to get up and down stairs in the small amount of time we had between lessons, especially when I had a heavy bag to carry. There was a meeting between myself, my parents and the headteacher before I started, but it was more than 12 months before anything was done. It was only halfway through my second year that my lessons were moved on to the ground floor or the first floor. Constant battle At the age of 14, I was diagnosed with Crohns disease, having been symptomatic for more than two years. I was then diagnosed with fibromyalgia aged 18 although again, I was symptomatic for several years before that. I was constantly battling my symptoms and this led to my social life being nonexistent. My evenings and weekends would be spent mostly inside with family, as I tried to reserve my energy for going to school in the week. My self-confidence was very low. I remember worrying about going abroad on school trips, as Iwasnt sure when Id be able to take my injections (I was on biologics at the time). It would also take me quite a long time to get ready in the morning, as Id struggle to fasten buttons and get dressed. Imissed out on so many opportunities. Looking back, I should have talked to my teachers more. Because I didnt have much confidence, my parents would do most of the talking when wed meet with teachers, but I should have stood up for myself more and explained what it was like for me. If you see someone with a crutch, walking stick or plaster cast, you instantly recognise that somethings wrong. Its more difficult if you dont have avisual aid, especially if youre a young person. I look fine from the outside, but that doesnt necessarily mean Im having a good day. After school, I did a degree in biology and then specialised in biomedical sciences. The plan was to go into teaching at secondary level, but this all changed in 2012, when my old paediatric consultant encouraged me to apply for a position at a clinical studies group. This exposed me to research and how I could help make things better for young people and families. I was involved in two studies as a patient adviser and began to think about a career in research. Im now doing a PhD at the University of Leeds, looking at self-management in children under 11 with long-term conditions, specifically musculoskeletal conditions, diabetes and asthma. Its more difficult if you dont have a visual aid, especially if youre a young person. I look fine from the outside, but that doesnt mean Im having a good day simons top tips n Talk to your closest group of friends and share your experiences, so they can help you feel less isolated. n Plan for every eventuality. Have painkillers, supports and gels with you so that, should something happen while youre away, you can deal with it. n Dont feel guilty. Some days you wake up and dont have the energy to do certain things. Youve just got to hold your hands up and say, I cant do this today, or Ill do it, but in a different way. If you would like to speak to someone about arthritis, call the Arthritis Care Helpline on 0808 800 4050, where you can receive information and support on any aspect of the condition.
