When I was at secondary school (ages 11-16) I was incredibly lucky when it came to my joints. I was very close to my PE teachers, and while I didn’t always tell them that I was having a rough time they usually knew and would ask if I needed to sit out. In fact I actually only asked to sit out once because of my joints, every other time they asked me. And more often than not I refused because I loved sports so much I would have rather suffered than sat out. I also used to feel that because I didn’t have a diagnosis that I couldn’t sit out even though it was never really like that at all.
I remember taking a lot of trips to the nurses office in the early days when my fingers hurt too much to write. We didn’t know what I had or why they were sore so she would tape them up to try and give them support while I was writing, and then I would spend the rest of the day trying to hide them from my classmates and teachers so I wouldn’t have to answer questions about it.
When I was in year 9 or 10 I took up the Saxophone which I loved. I couldn’t read music but I could play by ear when my teacher played the piece to me. However, as usual, bad joints decided to interfere and there were some days I couldn’t play because my fingers and wrists were too sore. We changed my lessons to the afternoon/late morning so it would be easier on my joints. I was also a member of the orchestra and some practices I couldn’t play, so I would sit at the back and listen. I usually just told the teacher I wasn’t feeling well but one day I decided to explain what was going on with my joints. It turned out my music teacher had Juvenile Arthritis and totally understood what was going on, and how my joints felt.
As you can see my secondary school experience was one of support when it came to my joints. There are so many people out there who have to fight their school tooth and nail just to get some small accomodations. I’ve heard of children being made to stand up for hours because the lesson demanded that they should be standing. I’ve heard of parents having to come to school every 3 hours to give their kids eye drops because their disease is attackig their eyes and the school doesn’t want to do the eye drops. I’ve heard of kids being forced to take part in physical education because the school doesn’t understand that kids get arthritis… Probably the most severe issues I’ve heard about is parents sending their sick kids into schools, exposing immunosuppressed kids to the sicknesses that can make them incredibly ill.
And then of course is the issue of being absent from school. My school was okay with me missing lessons for appointments, especially because I was hardly ever off sick. However for many kids that wasn’t the reality and the school couldn’t understand that sometimes kids with JA/autoimmune joint conditions couldn’t get I to school on time, or at all. And that these kids have a serious medical condition that requires the attention of medical professions, many of whom only have appointments during school time.