Secondary school and chronic illness

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.

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2 thoughts on “Secondary school and chronic illness

  1. Schools that don’t understand? Tell me about it!

    My school refused to allow me to carry my Ventolin or decide when I needed it because I didn’t have a formal diagnosis of asthma at the time (long story short, I do now. I definitely do now!) and my teachers were largely not very understanding. I also have severe hayfever but my PE teacher who had the kind of hayfever most people have and understand ie mild hayfever said that other kids just ‘get on with it anyway’ so I was forced to do 1500m runs on the grass playing field in the middle of summer..! Not to mention the amount of infectious people that came to school..every time I came back after being of ill the first thing I got from my teachers was “you have A LOT of work to catch up on!” with a disapproving look…

    College is fine though, and they all understand especially when I’m off ill. They also understand that while I will try my hardest there is a limit to how much work I can get done at home when I’m using up my energy breathing. My teachers are all sticklers about hygiene and spray down the lab benches and tables and chairs and wash stations between each class as an attempt to hinder the spread of disease from one person to another. I also turn into a full-blown member of the Hygiene Police when I’m on Pred., using hand sanitiser, and using sterile surfaces spray on EVERYTHING I TOUCH!

    Glad you had a good experience 😀

    1. That is brilliant your college is so good! I didn’t really tell any teachers other than my PE teachers that I had asthma and only my PE teachers knew that I carried Ventolin… I think we were supposed to tell the medical staff in the office but my I didn’t.
      I’m glad you are at college now and aren’t still at the school that doesn’t understand!

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