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The Challenges of Attending University With Chiari Malformation

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I learned many things in high school that have prepared me for my time in college. I was taught how to budget, how to write a well-organized essay, and how to pick a major that was right for me. These were all helpful things that I needed when I moved out — but no one taught me how to navigate life with an invisible illness.

I never quite know the right time to tell someone I have a Chiari malformation. Its not like a “Grey’s Anatomy” episode where it gets dramatic and people start crying, but my health and how it affects my life is certainly something that shapes who I am and affects why I do things the way I do.

The thing is, if your illness isn’t physically apparent or is not very well-known, in our society, you’re considered healthy. And while I wish this was the truth, it’s hard to explain to new friends why you suddenly can’t speak. I’d rather not drop the, “My brain isn’t allowing room for water to dilute my blood, so I’m starting to feel the same amount of pressure as a new can of hairspray,” line. It leaves people a bit spooked.

Now, I’ve certainly had to have conversations with my new-found university friends. Sometimes, I’ve just found it more effective to casually drop the, “My brains is falling out of my skull,” line with laughter until everyone laughs with me. But although I treat it as something lighthearted, its hard to joke about something that leaves me bedridden, unable to move or talk for hours. I think for a lot of people living with bizarre illnesses, humor tends to be a coping mechanism when it’s hard to explain our conditions.

When I have taken the time to explain my illness to a friend, I think I can say I’ve heard it all. I get a lot of bizarre questions you would never hear anyone ask a cancer patient. Often things like, “Are you going to die?” or, “Is that even a real condition or are you just kidding?” And my favorite, “My mom used to get migraines, have you tried yoga?” Hate to say it, but yoga isn’t going to shrink my cerebral tonsil, dude.

Exploring a new chapter of my life with an invisible illness has presented its own set of challenges. My friends can yell and scream at a home opener game, but putting pressure on my head will make me dizzy and leave me in pain for days. Heck, even moving my neck to watch players running back and forth is enough to make me want to crawl into my bed for the weekend. The point is, an invisible illness like Chiari malformation can prove just as challenging as better-known illness people are able to relate to. And while trying to keep up with my healthy friends has proved to be a challenge, my condition has shaped me as a person and I’m proud of who I’ve become, illness or no illness.

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Originally published: November 9, 2017
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