Juvenile Arthritis & Your Education

Education is very important! And while there may be many days when the thought of getting out of bed may feel like the equivalent of climbing Mount Everest, there are steps that can be taken to ensure that you can still receive a quality education, while hopefully minimising stress and the associated flare ups!

First step: Educate the Educators! It is a common misconception that arthritis is ‘an old person’s disease’. For those of us who are well educated about all things JA, we are fully aware that arthritis doesn’t discriminate. We are also fully aware that at times it can be an invisible illness. I came across an image on facebook which said “If we are hurting in silence, it does not mean that our pain is not there. It simply means that we are not ready to show the world just exactly how strong we really are.”

My Grade 1 teacher was adamant that I was ‘putting on an act’ as she didn’t understand why I could be so sore at school, yet come good when I went home. Being so young, I found it hard to express what I was feeling. The truth was, the arthritis was far from controlled, I suffered severe morning stiffness, and having to sit at a desk for 90 minutes at a time without being able to get up and move around was not helping the cause. After school I had the option of getting out and about and keep moving which kept the stiffness at bay.

There are many resources available such as this one from the Arthritis Foundation – Juvenile Arthritis A Teacher’s Guide.

Second Step: Choose your subjects and work with the school. The aim is to try and reduce the walking distance between classes (for example if maths and science are in the same building, then schedule these classes together, if History is also one of your chosen classes, (however the classroom is located in another building), try to schedule this class maybe after recess or lunch to allow extra time to get to class, particularly on a bad day.

I’ve been involved with the Juvenile Arthritis community in Australia through various support groups for a long time. While not every school seems to have the same level of sympathy, there are some which are happy to assist with planning classes to meet the needs of their students. For example, at the high school I attended, each school day was broken down into 7 – 45 minutes lessons. Three in the morning before recess, 2 lessons before lunch and the remaining 2 lessons to finish out the day. The math and science blocks were in the same building, history and english were in another and art and tech art were relatively close.

Third Step: Ensure the school is aware of the medications which are being taken each day, and educate them so that the school is able to assist in the management of pain. The school should be given an up -to-date list of medications which are currently being taken as well as the contact details for the doctors and specialists. If the medications being taken interact with other medications or if the student has  allergies, these need to be listed to. Put a contact with this list that the school can call if the need more information, such as the Adverse Medicine Events Line (AME) 1300 134 237, (AME can provide an avenue for reporting and discussing adverse experiences with medicines), the Poisons Information Centre 13 11 26 or their pharmacist.

Fourth Step: Ask your physiotherapist to speak to the school about appropriate sports that you can participate in during PE lessons. When I went to junior school the school were fantastic and had a program  set up for me and two friends to participate in so that I was not left out. Instead of playing hockey, we would play skittles (as this was an activity that I could do from my wheelchair when the pain was really bad). On days when we played cricket, I was still able to bat and another student would do the running. During high school I opted to spend the PE lessons in the library catching up on school work and studying.

Fifth Step: Speak to an occupational therapist about how the classroom may be able to be modified to make your time at school easier. In junior school an OT assessed me and made the arrangements for a disabled toilet, ramps, special supportive chair and a laptop computer.

Have I missed something? Please contact me and let me know.

 

Tara’s Tips

  • If the arthritis is active, the pain is going to be a distraction. Think about it, how productive are you when you are suffering a migraine? You are better off to rest when you are in pain, or move onto an activity that is fun, less stressful and can in itself be a distraction from the pain.
  • Instead of keeping all of your textbooks in a locker and having to carry them with you from classroom to classroom throughout the day, request two sets of textbooks – one to be left in the classroom, the other to be left at home. That way the only books you should need to transport between classes are the exercise books for note taking.
  • If Physical Education class is not suitable, request that this time instead be spent in the library catching up on lessons or homework.
  • Ensure you have a suitable backpack, school bags carried over the shoulder may be trendy but they are not practical. These can put unnecessary stress on already sore joints. A backpack which is well fitted helps to spread the weight of the backpack evenly.
  • Keep a waterbottle with you! The medications I am on, and the flare ups on a bad day make me extremely thirsty, and particularly when sore having to walk further to find a water cooler is not fun.

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