I was diagnosed with Juvenile Rheumatoid Arthritis when I was fourteen, at the time I was in eighth grade. This was a life-changing moment for me-- especially during the year before high school.
The first medication I was prescribed was Methotrexate, a chemotherapy immunosuppressive drug that treats many chronic illnesses as well as Juvenile Rheumatoid Arthritis. I was diagnosed in the winter during basketball season, soon discovering winter is my worst season for flare-ups. I received my injection every Sunday night and that caused me to miss school every Monday morning due to its side effects. I worked with my school to set up a 504 plan. This is an accommodation program implemented in the United States to ensure the success of students with disabilities. With this plan, it solidified that I could miss some mornings. A few weeks later, my side effects got worse. My hair was falling out, I was constantly throwing up, I could only eat cold foods, and I was getting very sick. I started missing more school, but thanks to my 504 plan, I was able to catch up with my schoolwork at home.
During my first year of high school, I switched to a Humira injection. This was a game changer for me and I started having fewer side effects. Since I was at a new school, I had to set up a new 504 plan that took into account testing accommodations for state tests. I have always had very kind and supportive teachers who may not have understood how much pain I was in by looking at me but knew I still needed accommodations. Some accommodations that helped me were taking walks when I felt stiff, standing instead of sitting, typing instead of writing, and extra days to make up work. In high school, there was a lot more school work and it was hard to catch up sometimes, but with the support of my 504 plan, I was able to get all my work done in a timely fashion. State testing was coming up as the school year progressed, so my doctor and I came up with some extra accommodations. This included testing in a small group, taking breaks as needed, and double testing time. I was able to take all of my state tests that year with my accommodations. This was a huge accomplishment for me.
It is so important to me to share my story especially when it comes to school and how I manage the two. There was one time when a girl in my English class came up to me and asked me how I managed my chronic illness and school. She had just been diagnosed with Lupus at the time and I was very grateful that I was able to share my experiences and benefit other people.
Last year, a new school opened up that was a half-day charter school. This was a better fit for me with my chronic illness as I would only be in school for half a day. Most of my accommodations were eliminated as I wasn’t sitting in school for eight hours. However, I have experienced that before, so I can still share my experiences with those struggling to manage school and a chronic illness. I acknowledge that not everyone is accessible to half-day charter schools but I hope by sharing my experiences, I can help people.
School can be hard at times but it is most important to remember your goals are bigger than your problems and you are going to struggle at some points. So it is always important to be kind to people and if you can offer them good advice, then do it! You never know how positively you can impact people or comfort someone by sharing your story with them to inspire them during a hard time.
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