How should schools respond to invisible illnesses?

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Earlier this week, I received a letter from the administration reminding me, in hard black letters, that I had missed more than 18 days of school and, in the future, I will need a doctor’s excuse for all other missed days.

Portrait Artist Christine Swann’s “Invisible,” made in response to her daughter’s diagnosis.

This letter went in the trash with all the other junk mail. I have received one of these letters every year since I was in fifth grade. It was not a new sight. But for some reason, this time, the letter stuck with me as I realized I will never graduate without receiving one of those letters.

When I was eleven years old, I was diagnosed with CRPS (Chronic Regional Pain Syndrome) which is a virtually incurable autoimmune disorder that causes my nerve endings to misfire until I am in an endless cycle of pain. But the damage is below the skin, giving the disorder the nickname of the “Invisible Illness” because, despite how sick I actually was, I would always look healthy.

There were days when I would wake up in the morning unable to move a leg or an arm. Or I would be so ill that the smell of a light perfume would leave me puking over a toilet. Or there would be entire weeks where my mind was so fractured by pain that I could not put together a full sentence. The older I became, the more the condition progressed, but it was never seen anywhere outside of  my own head. 

No one is ever truly visible, and the most put-together people in the world are usually the ones who have the most to hide.”

I tell you this because at NA, a school of such massive size, it is far, far too easy to judge others by how they appear. I looked fine. I seemed fine and that was an endless source of frustration to my teachers and other students. But it wasn’t until my freshman year when I was forced to consider leaving school altogether. 

Before I explain anything else, I need to make a few things clear. NA, on the whole, has been good to me, and my years at NASH have been nothing short of wonderful. But in a school this size, NA has to appeal to the “average” student. A teacher can have northward of a hundred and fifty kids and they just don’t have the time to spend to get one person caught up.

I need to say that they thought they were doing right. Every time I got sick during a test and they made me finish instead of going to the nurse, they thought they were doing the right thing by not letting me get out of it. Every time I asked for an extension on an assignment and was told “no,” I understood why. I looked healthy. I looked like a liar.

There were multiple times, I discovered after the fact, that a teacher would not read my 504 or IEP (a legal document explaining my situation) until weeks or months into the school year because they just didn’t have the time with so many students. There was one instance in particular where a teacher asked me if I was doing drugs in front of the class before I reached into my bag and gave her my latest hospital excuse. Going further, I was encouraged to take basic classes instead of accelerated, which is against traditional NA rhetoric, and repeat grades or courses despite having straight-As.

Finally, my freshman and sophomore year, I deteriorated to the point where I was no longer able to eat. I missed over a third of the school year, 69 days in total, not including days I had to leave early. At the end of that year, I was called to a meeting with a member of the NAI staff (whom I will not name) who encouraged me that it would be in my best interest to leave NA to attend cyber school or stop attending until I was better. Offhandedly, he mentioned that my chances of going to college the way things were then were slim, so I should stop trying so hard.

Again, I do not blame him. He was trying to look out for me because the teachers he was responsible for didn’t have the time for me and I was struggling. He wasn’t wrong to say what he did, but even as I refused to leave, there was a part of that conversation that stuck with me, reminding me that if things got any worse, I would lose my education. 

That summer, something finally changed. I found a holistic doctor who could properly treat and help me get to as close to “normal” as I could. It may have taken six years and hundreds of doctors to get there, but within a month under his care, I was eating again. When fall came, I returned to school the healthiest I had been since I was eleven years old.

In the end, I am lucky. So, incredibly, impossibly lucky that I am doing as well as I am now. But just because I’m better doesn’t mean I’m cured and it doesn’t mean years of struggle just go away. Right now, as I write this article, I’m at home, lying in bed, and suffering from my worst flare-up in months. And I can’t help but remember the wording of that letter that reminds me that, despite how far I’ve come, I will still never make it under 18-day mark. I will never be “normal.”

Later, after I left NAI, I went back and talked to some of those “well-meaning teachers” and asked them what it was like having me as a student. Every one of them had the same thing to say: “I didn’t know what to do.”

And that is where I failed myself. Appearances are the one thing we can control and I never wanted to admit that something was wrong. I would come back and ask for my makeup work, but I never gave them an explanation of “what broke that week” because, in my mind, admitting there was a problem was providing visibility to what I wished was unseen. So I would give vague, one-sided responses to their questions instead of specifics and spend hours watching makeup tutorials to learn the exact shades of pink and peach to hide the blue tinge to my lips and the black around my eyes. That way, on the days I was at school, no trace of my condition would be found except for the mounting missed-day excuses.

I was ashamed. And because I was, I took an illness that was already unseen and hid what little was visible. It took years for me to accept that, no matter what I did, my illness was still a part of me and that people only see what you let them.

And that is the point of addressing this. At NASH alone, there are 121 students like me in need of support services and individualized education plans because they don’t fit the typical student plan. Moreover, 1:4 people, at some point in their lives, will suffer from mental health disorders which are “invisible” illnesses of their own kind.

Being “invisible” is not uncommon, and unseen problems plague us all. It’s a difficult concept to grasp: that so many people are outside the normal student that any appeals to the “norm” don’t work at all. Everyone is struggling with something unseen, be it mental health problems, a bad home life, or a disability. No one is ever truly visible, and the most put-together people in the world are usually the ones who have the most to hide. Having problems doesn’t mean there is something “wrong” with you that you have to make disappear.

Yet, on the day you finally accept that, you get a letter that tells you something is. And my advice is to do as I did and throw it in the trash because there is nothing wrong with being invisible. But there is something wrong with being ashamed of it.