By Megan VanScoyoc
Hidden disabilities are a tricky topic to address. Often, people think that you’re lying about your illness because “you don’t look disabled,” or “you seem to do well on your own.”
I was 13 when I was given my first diagnosis: general migraines. At 13 I was first put on medication to treat and prevent my migraines. At 13 I would go to the school nurse when I had a migraine and was laughed at and told“No, you just have a headache.” At 13 the school nurses would deny me treatment, and refused to let me go home when I was lightheaded and unable to stand or focus properly until I came back with a written doctor’s note.
The first two prescriptions didn’t help. One medication treated my blood pressure, so I was instructed to stay still for a few seconds after standing to prevent passing out. When I was given another medication, my mother was warned that it could decrease my brain function. It could cause me to forget things and to be generally “slow,” as my doctor put it.
I was 15 when I had my first hospital trip due to a migraine. I woke up one morning unable to form proper speech. I knew what I was trying to say, but the words wouldn’t come out. I couldn’t type either when I tried to text my mom to tell her what was going on.
We thought I was having a stroke.
At the hospital, we were told it was just a migraine, and that doctors don’t know how to treat migraines because they’re different for everyone. However, I would eventually have my “normal migraines” that stay consistent symptom-wise.
Shortly after, I was diagnosed with hormonal migraines. Since the medications I tried had not worked so far, I was put on birth control. They eased the migraines that stemmed from hormones, but not the migraines caused by any other factors.
It was terrible trying to grow up with a chronic illness that I didn’t understand. My struggle was worsened by professionals constantly telling me that I would just grow out of it, denying me proper treatment. Nevertheless, I persisted, and continued performing in music groups and marching band, and graduating high school.
In my junior year of high school, I was diagnosed with chronic migraines. Even at 21 years old, I am still told “you’re just too young to have chronic migraines.” I know, I’m too young. This shouldn’t have happened to me. 14-year-old me didn’t deserve this, and I still don’t.
Enter: COVID. For those who don’t know, blue light and screens in general can harshly impact migraines. I was suffering. All my classes were online, and each exam I took resulted in horrible pain from staring at the screen for too long.
In January 2021 I had a month-long migraine that made me terribly nauseous. I was unable to eat for most of the month because the smell and thought of food made me extremely sick. I get terrible jaw pain with my migraines, and even opening my mouth hurt.
I was miserable, and in my sophomore year I failed one of my pre-requisite classes because I gave up. It hurt too much for me to continue to try in that class, so I admitted defeat and decided I would try again the next year when the class would be in person. I was bitter for a while, because I knew that if the class was in person or if the exams would have been on paper, I would have done well.
In the spring semester of my sophomore year, I wanted to try to find new treatments since more options have become available. I was approved for Botox, and I was ecstatic. I had heard of positive experiences with using Botox for migraines, and I couldn’t wait to try it. Then, I got a call from the company that would be supplying my Botox, informing me that with insurance, the treatment would be $1100 out of pocket every 6 weeks.
I sat on the bench outside of the library and cried. I was so close to finding relief, only for it to be taken out of my hands immediately because I was a 19 year old college student with maybe $500 in my bank account. I cried and cried and cried, then I accepted that this was how my life would be. Excedrin migraine in my pocket, a caffeinated drink in one hand, and an ice pack in the other.
At the beginning of my junior year of college, I was put on an SSRI, an anti-depressant. One day in October, I had a horrible headache and felt unwell overall. I looked in the mirror and realized my pupils were drastically different sizes.
Naturally, I texted my mom. My mom freaked out, and I decided to go to the emergency room. I passed out in the hospital and my head hit a wall. After that I had months of lightheadedness and fainting spells. These were not connected to the migraines, but it enabled me to finally go to a neurologist.
The neurologist said he couldn’t help the fainting, but he did have a new treatment for me to try for my migraines. I figured, hey, why not! If just one thing can finally be treated, I’m more than happy to deal with my lightheadedness for just a little bit longer.
I was prescribed a monthly injection to ease my migraines. After my initial dose, I had a mild allergic reaction. My legs swelled and I was covered in hives for days. They decided to give me a new prescription and I was instructed to take Tylenol and Benadryl before administering this injection. I am now 6 months into the new treatment, called Aimovig.
Once every four weeks, I sit in my kitchen clutching a pillow or squeezing my boyfriend’s hand, begging my mom to hurry up as she administers the medication for me. The medicine hurts, and I get a bruise each month, but I am finally finding relief.
If you made it this far, you’re probably thinking “why does it matter?”
It matters because you would have never known this about me if you saw me in the dining hall or by walking past me. I have chronic migraines, and some days they are genuinely disabling for me. Some days when I have a migraine, I can’t get out of bed. I genuinely go blind for a short time, and I can’t take notes.
Some professors don’t care enough to accommodate because it’s not an official disability. I’m not covered under ADA unless my migraines are from an underlying cause. I struggle with not attending class because I’m terrified of professors thinking that I’m just making it up, or I’m just giving an excuse.
I can say with confidence that if I didn’t have these chronic migraines, I probably would not be struggling with my mental health as much as I am. Experiences like this take a toll on you, your body, and your mind. This is so important because you’ll never know what your students, professors, coworkers, teammates, or friends are truly dealing with.
Migraines are tricky, because I have high functioning days with migraines, but some days are crippling to even open my eyes. They are completely different for everyone.
For more information, I highly recommend looking at www.migraine.com. It’s a forum for people suffering with migraines and can give a fantastic insight of different perspectives.