Throughout the rest of my childhood many more joints were affected, both knees, hips, jaw and ankles. I was still given the same advice from doctors I just to deal with it and get on with it. I did see an adult rheumatologist who had an interest in children. I remember feeling so uncomfortable and awkward sitting in the waiting room surrounded by people much older than me. Put it this way, I brought the average age down by many decades! The only treatment I was given were steroids which for a teenage girl is never a good thing. My weight fluctuated and the moon face was very apparent, not the most flattering look. I had many days and weeks of being unable to walk. The support I had from teachers was non-existent. School trips were awful. After long coach trips my joints became so stiff and I ended up alone in pain, unable to walk and therefore known as the ‘difficult kid’. I had learnt to write with both hands, as teachers did not believe me when I told them about my pain and inflammation, despite showing them how swollen my wrists were. It won’t come as a surprise that I don’t have any fond memories of my school life.
JIA is also more than ‘arthritis’. The stiffness of joints in the morning, the fatigue and the emotional impact hits you hard. School life is tiring for anyone. I used to come home from school feeling utterly exhausted, trying to sum up some energy to do homework and have a social life. I did have some close friends, but it was hard for them to understand the nature of the disease. Some days I could go out have fun, others it was an achievement just getting out bed.
University Life
It wasn’t until I went to university where I had support from some amazing friends and tutors especially my Head of Faculty. My JIA was flaring badly in my second year and I was so close to giving up. I remember breaking down in tears on the way to a lecture, I couldn’t see how I could continue studying like this. I was outside the Head of Faculty’s office sitting in tears. She saw me and I remember going in her office, tears still flowing down my face not knowing the next conversation was to change my life. She was the first person who really listened to me and got what was I going through. She also had an autoimmune disease and the way she spoke about it wasn’t with an ounce of shame but something she had successfully mastered and learnt to live with. It was the first time on a deeper level I had ever really spoken about my JIA, I had always try to ignore it, ‘deal with it’ as the doctors always told me. But I realised I hadn’t dealt with it, I couldn’t ignore it anymore. My future was before me, I could either let it stop me, like it did with gymnastics, or I could start to learn how to embrace it and learn to live with it. Through her support she gave me the confidence to continue. It wasn’t easy, I did have counselling to help me with the emotional side of JIA, but I did it.
I was so proud to finish uni with a 2:1 in Statistics and Economics, also the first woman in my family to have graduated from uni.
I went onto have a successful career, married someone who I had met at uni, and had two daughters.
As a family we have climbed Mt Snowden and Pen Y Fan. My JIA was always there, flares continued however I was better equipped to living with it. What I didn’t know, was the additional curveballs inflammatory arthritis was to throw at me, read part 3.
