Anonymous, college student

My name is [redacted], my pronouns are she/her, I'm a senior in college, I have an undiagnosed autoimmune condition that began when I was a freshman in high school.

In high school, being disabled impacted every part of my life. My friends thought I was lying or attempting to attract attention, so they left me friendless. I also never attended a full week of high school until second semester junior year, I had to be homeschooled sophomore year, and I generally missed out on typical high school things like football games, pep rallies, dress-up weeks, etc. I didn't enter my high school's gym until senior year!

My experience as a disabled student in high school was mostly neutral with negative spots. Obviously my friends ditching me was a huge negative, but I was lucky that my guidance counselors and teachers made reasonable accommodations for me to be able to still be as much of a participant as possible. My peer relationships sucked, but my teachers mostly treated me well and were accommodating. I had issues with only three teachers, which given the size of my school is not many, who had discriminated against me based on my inability to do certain things (like walk, show up to school on time, etc) but claimed it was for other reasons.

I wish that we lived in a world with sunshine and rainbows all the time and everyone just loved each other. Hahahah just kidding, I know that's not possible. I wish I would've just been viewed as someone who was the same as everyone else and just needed a little help here and there rather than this medical mystery that could've been just an attention grab. A girl in my class got cancer sophomore year, and I remember spending the rest of high school wishing I could trade places with her. She got love, support, and no questions on her accommodations. She gained friends through the process. I lost friends, had to fight for equitable access, and struggled to find compassion from anyone but my guidance counselor and teachers.

In high school, they were just reasonable and had a "if it's easy for me to accommodate, I'll accommodate" attitude. For example - I was allowed to take some classes online so I could sleep in to hopefully make it to school more often and compensate sleep for the nights I was up super late in pain. But I needed an accommodation to take my tests outside of the room with unlimited time because it's hard to read when your pain level is a 10 and you're not used to that! That was a bigger issue because it required and IEP and a 504, but through all the paperwork they were helpful.

The most helpful thing to me was allowing me to take online classes through our district's provider to be able to get to school later in the day. I was usually up until 1, 2, 3 am in level 8 or 9 pain, so being able to sleep until 11 really helped.

It was relatively easy to get the help I needed. I know my parents fought a lot of battles without me knowing, so maybe it was actually more difficult than I remember it being.

I was in a wheelchair for a while because of terrible neuropathy. It made it feel like I was always walking on pins and needles and that just sucked, and my school was on like an acre of land or some large amount, so walking all the way across school to get to my classes took me way more time than it took me to just roll. There were elevators near each stairwell, so it wasn't less accommodating than for an able-bodied person. The elevators smelt really bad, but at least we had them!

I wish they knew how hard we try. I know our 10/10 effort doesn't look like an able bodied student's 10/10 effort, but it's our best. We're trying just as hard as everyone else, if not harder.

I would've liked a support group through the school. We had a GSA and a divorced kids support group, I don't see how difficult it would've been to have a disabled students support group.