Dealing With The Invisibility of a Chronic Illness

Being diagnosed with Lupus Nephritis for coming up on 2 years soon, I’ve faced many struggles. And while many of them have been caused physically by my illness, some of the hardest struggles I've faced have come due to misconceptions and predispositions against chronic illness. 

I was diagnosed with Lupus close to the end of grade 10. I started showing symptoms in March and would quickly worsen after that. I was unable to go to school and was quickly cut off from all my normal social interactions. My world was slowly collapsing around me, and I already had so much uncertainty around me; the last thing I needed was extra stress added on from my school. However, this would sadly follow me for over a year. 

During my initial absence, my teachers would send me work and keep me as up to date as they could with the course load while I was unable to come for an in-person evaluation. However, my teachers were all very supportive and understood the severity of the situation. Unfortunately, the administration of the school was not as supportive as my teachers. They felt like I was trying to game the system and get away without doing tests or exams. Luckily for me, I passed all my classes thanks to my teacher's actions and the fact that the admin didn't realize I was gone until the end of the semester. However, this wouldn't be the first time they'd treat me unfairly. 

I'd start my grade 11 year with constant requests for letters from my doctors for every day that I'd miss, as if I was just using my illness as a free pass to skip out of school. This was also frustrating because my doctors clearly explained my illness time and time again to the admin, yet they seemed to just not care or not understand, and think they know better. Any accommodations we'd ask for would be left unheard or simply told was not possible. This was incredibly frustrating because after all the struggle I'd been through, I was being told my illness was invalid and that there was nothing they would be willing to do to help me. 

Despite all this, I still swim for the high school team as I swim at an elite level for my club. I was captain of the team and would win medals for them at meets. This would be used against me by the admin when they told me to leave school and go fully online. Telling my parents and social worker that I "look fine when I'm at school” and that I did well at the swim meet, so I can't be sick. Yet again, I was getting treated unfairly. Just because I can compete at high levels doesn't mean I don't struggle with day-to-day tasks and maintaining my health. 

Things do get better, as this year I moved schools and things have never been better. The entire school is so accommodating, it's incredible. I was scared at first to make the move, thinking all schools would be as difficult, but my new school understands my struggles and does its best to accommodate me. They are also proud to have me at the school and don't treat me like a problem. Thanks to the new admin's understanding of chronic illness and willingness to cooperate with doctors, I can receive the education I deserve.