What It's Like Being a Student With Scoliosis

With another school year starting, I’ve been thinking back on my own school days. I had friends, got decent grades, never got in serious trouble. Despite that, my entire middle school/high school experience sucked. There were plenty of things that had nothing to do with the school itself, but there was one area where they failed me completely. They refused to acknowledge my scoliosis.

We can all remember that time of year when students groan and moan about the scoliosis screening. While for everyone else it was nothing more than a nuisance, for me it was the most dreaded day of the year. Most kids didn’t fully understand what scoliosis really was, and didn’t care. I, on the other hand, knew exactly what it was. I lived it, I hated it, and on this one day, everyone knew it. That I had this condition that no one really understood, that seemed to be serious enough to make everyone go through the screenings for it. It almost felt like the whole school had to be punished because I had this unspeakable thing “wrong” with me. I felt like a total “freak.”

I had to fight the nurse every single year because she didn’t care that I already knew I had the condition. She didn’t care that my mother had sent in a doctor’s note and called multiple times. And she definitely didn’t care that I hated her for it. The rest of the year wasn’t much better. For the longest time I tried my hardest in gym. I tried to keep up the best I could, but no matter what I did, nothing was good enough. When testing came around, I couldn’t stretch right, I couldn’t run, I couldn’t do much of anything the way state standards told the teachers I should. And even though my gym teachers had been told about my condition, it didn’t seem to matter.

While a boy who was severely obese got good grades because “he tried his best,” I got marked down because I couldn’t keep up. My teachers, honestly trying to be supportive, pushed me to do my best, yet couldn’t understand that I already was. I didn’t have asthma, so when I couldn’t even finish the mile run before class ended, it was assumed that I wasn’t trying. They were wonderful people and I honestly believe they did their best, but I don’t think they had any idea about what I was going through. After years of explaining it and no one understanding, I had stopped talking about it.  Yet I held resentment towards the teachers because they couldn’t see past my appearance to understand that I had issues just as bad as kids with visible conditions. Eventually I gave up, started “forgetting” to bring in my gym clothes, started pretending to be sick. When I got sick of excuses I just did what they thought I was doing already. I got lazy and lagged behind on purpose. Why bother?

For the rest of school it was the usual things you’d expect to be a problem. Backpacks caused a ton of pain, but no one really cared back then. I was often late to classes because I had three minutes to run from one class, to my locker, to the next class, and as I’ve already mentioned, I can’t run. But all the other kids were told they needed to carry all their books, so I had no excuse. Scoliosis be damned. Besides, when a kid complains about back pain, the most common response from adults was “They’re making it up.” Because apparently back pain is only for old people. Believe me, this has been an issue since I was 4.

Endless times I tried pushing myself to do what I was told, to carry all my books with me. I wasn’t late for class, so my teachers were happy. But I’d come home crying in pain and my mom would get mad at me for being silly enough to carry so much. Either way, I lost.

My favorite part, and one that has gotten a huge “Yes, OMG I hate that” from the scoliosis community on social media, was picture day. I’ve been told to sit up straight so many times in my life, my eyes instantly roll when I hear it. Since my condition got progressively worse through every year, especially after puberty, every picture day was worse than the last. My final few years in high school, the photographer would physically shove me into an acceptable position for a photograph. And believe me, when a kid takes longer than usual just to have a simple picture taken, everyone notices. Check for one more reason to feel like a “freak.”

Going through middle school and high school can be tough for a healthy kid. Having to go through it with a disability, or a “deformity” if you use the degrading word doctors use, can make it hell if it isn’t acknowledged. All that was needed to make my school life better was understanding and the tiniest bit of care. Starting at the top. I don’t know if it was school regulations, lack of education or someone in the principal’s office brushing it off as no big deal, but I do know it shouldn’t have taken much to fix. Like fully educating the teachers about what to expect if they get a student with scoliosis. Seems logical, since they were required to do the screenings anyway. I can remember a few who did their best to cheer me up or make me feel better, but with no word from the office, why would they single me out, out of all the kids they care for in a day, for special treatment?

My school years are over and I pray that no one else’s kid ever goes through what I did. I’m so glad some things have changed, even though many schools have eliminated the screenings altogether.

Teachers, if you get a student with scoliosis this year, get to know them and what they need. Offer help in whatever way you can and try not to single them out to make them feel different. If they say they are in pain, believe them. Especially gym teachers; if they can’t seem to keep up, understand that they might not even fully understand why. I sure didn’t. And let them know they are strong for pushing through things that aren’t easy for them. I couldn’t imagine doing your job. You guys are awesome. I know that’s a line parents throw at teachers once they’ve got kids in school, but regardless, it’s true.

To parents: be your kid’s advocate. Although regulations have changed and education about scoliosis should have gotten better over the years, each school is individual and if they have never had to deal with scoliosis before, they might need an extra push.

And to the student going back to school with a brand new diagnosis: you’ve got this. You may have a lot to face, but despite what I thought of myself as a kid, you are not a “freak.” If your peers make you feel awkward about your condition, remember you are going through something they aren’t and can’t understand. That doesn’t make you weird, that makes you strong. Own your body and don’t be afraid to speak up if you are being pushed too far, or if you aren’t getting what you need. Believe me, it’ll make your school life easier. And most importantly, you are awesome. Scoliosis may change us, but it does not define us. We are scoliosis strong. And you are going to rock this school year.

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Thinkstock photo by Seb Ra.