An ‘invisible disability’ is even harder when you’re a kid

Every day is a little different. Sometimes it’s a jackhammer, a needle in the eye, or a bruising pain.

When I was 6 years old, I heard the word migraine for the first time. In the 12 years since then, I’ve gotten better at describing the feeling in my head. It’s not, for instance, just a “bad headache,” as some think of it, that goes away with a couple of pills. It’s much more than that.

I can be fine one minute, then something as simple as a loud noise, bright light, or smell will debilitate me, and I have to go home, go to my room, and turn off the light. If going home isn’t possible, I deal with the migraine the best I can until I can get home; a chronic pain management therapist once taught me mindfulness and breathing exercises, and sometimes they help.

I’ve been hospitalized and tried many different medications. But it’s still a constant struggle. I once had a migraine for 110 days without a break.

My migraines take a severe toll on my life. I’ve missed school, sleepovers, birthday parties. I’ve struggled to keep up with my schoolwork. It’s hard to read and concentrate when there’s a constant pounding in my head.

Migraine can surface in different ways for different people and sometimes does not even have a clear trigger. It is not an easy disease for adults to handle, let alone for young people.

According to the American Migraine Foundation, roughly 10% of U.S. children have migraines. An estimated 1.5% to 2% are like me and have “chronic” migraine, which affects them more than 15 days per month.

These numbers scare me because I’m sure they significantly underestimate the actual number of young people who suffer from migraine, since, due to limited research, pediatric migraine is underdiagnosed, undertreated, and often misunderstood.

That’s because, when people think of migraine, they don’t think of kids or young adults. So it’s hard for parents, teachers, and even doctors to diagnose pediatric migraine, since when kids say their head hurts, people too often assume they hit their head while playing, or have a concussion.

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I’m lucky to have a great support system. Both my mom and grandmother have had migraines, so they understand what I am going through, provide support, and help me advocate for what I need.

But as supportive as they are, I tend to hide my suffering to try and be a “normal” kid, so as not to worry anyone. Even though my mom and grandmother can understand the pain, being a kid in today’s world is the one thing they can’t relate to. The thought of going to concerts, or even the store, causes worry about what triggers might be waiting for me. In addition to migraines, I have struggled with anxiety my whole life. Migraine has only made that worse.

It’s a terrible cycle: Anxiety can bring about a migraine, and having migraine brings on anxiety. In fact, studies have shown that anxiety is found to be four times higher among those with migraine than for those without.

Migraine and anxiety have one major thing in common: They’re both examples of so-called invisible disabilities.

An invisible disability includes any ongoing health challenge that is not obvious to the people around you. When I have a migraine, if I didn’t say anything, most people would probably never know.

There are so many others like me. Among the more than 60 million Americans who have disabilities, roughly 10% are invisible to the people around them.

Because my disability is invisible, there are times when I wasn’t sure people believed me when I said I had migraines or anxiety, even teachers or the school nurse. “But you look fine!” they might say. Some probably thought I was making it up to get attention, or to get out of doing something I didn’t want to do.

“But you look fine!” they might say.

My invisible disability is a particular issue when it prevents me from going to school. I have a different teacher for each subject, so I have to explain why I was absent over and over. I always feel like some teachers think I was on vacation, and penalize me for being away. My school has a policy that any work missed must be completed the day I return to school, and catching up on everything I’ve missed (plus keeping up with current work) can stress me out, which then can bring on another migraine. What’s worse, my schoolwork is all online, and using screens can make my migraine worse.

This ends up being a problem for me socially, too, as I may not answer a text right away if I’m in the middle of a migraine when it hurts to look at my phone. When that happens, my friends sometimes end up feeling neglected or think I’m mad at them.

The best way to address ignorance is awareness. For kids with invisible disabilities, it’s especially important for schools to be aware of the reality and scope of health problems we cannot see. Schools have become more accommodating for students with visible physical ailments, but accommodations for unseen disabilities are much harder to come by. Parents and students should work with teachers and coaches to be more lenient in such areas as extended time to complete assignments and tests, sports participation, and needing to leave class for extended periods.

Each disability requires its own accommodations. For migraine, schools need to do a better job of understanding that symptoms vary from person to person, and even if someone’s symptoms aren’t “typical,” they can still have migraine. We need to be able to take medications or rest in a dark, quiet area, if needed, and have access to water at all times, as hydration is important to avoiding migraine onset.

No one should ever have to feel like there is something wrong with them, or that they can’t get help just because people can’t see and don’t understand what they are going through.

I have become active with the American Migraine Foundation in advocating for pediatric migraine, with the hope that maybe I can make some sort of difference. I want to let others know they are not alone.

Lexi DiMarino is a senior at Radnor High School and the first American Migraine Foundation youth ambassador.