A Snapshot of College Life With Vasculitis

Imagine a college student who rarely goes to parties, never drinks to excess, and avoids virtually all risky behavior. Thanks to my health condition, that student was me.

True, some young adults are laser-focused on their degree and future career and have an incredible amount of self-discipline. But for the most part, a college-age teetotaler tends to be an anomaly unless there are extenuating circumstances.

Like many others diagnosed with vasculitis at a young age, my college experience was unusual. Instead of partying, I hung out with a quieter crowd, who enjoyed pursuits like movies and cooking. Rather than indulge in the unhealthy dorm snacks that many of my friends had lying around, I attempted to eat a balanced diet in the cafeteria.

Above all, I had to make sure I got enough rest every night. I think I only pulled one all-nighter to finish a term paper, knowing I could sleep in the next day!

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I remember one weekend that was particularly traumatic. Something had come up in my lab work that needed to be monitored more closely, so my doctor requested a unique strategy. I was to collect all urine passed in a 24-hour period in one jug, which would then be returned to the lab to measure the buildup of the substance in question.

At the time, I was taking medication that required me to visit the restroom more frequently than normal. There was no way I’d be able to walk to and from the university building and sit through a 70-minute class without going. Imagine carrying that jug around school, even if it was disguised. No way! I opted to skip all classes that day so I could complete the process in the safety and privacy of my dorm room.

All of that said, I didn’t suffer for fun. I made unforgettable memories, such as the time I sat on top of a four-story building sipping honey mead (home-brewed by one of my talented classmates!) and looking at the stars. We explored our college town, learned new games, and listened to unfamiliar music.

I had plenty of friends who pursued all sorts of thrilling activities. I simply learned to navigate the social waters in a way that wouldn’t hurt my body or irritate my condition. It turns out I probably did myself some favors in the process, both physically and mentally.

Parents of college students with vasculitis often ask me how worried they should be. This is a hard question to answer, because everyone has different goals for their education and different tendencies toward different vices. To make it more complicated, no two vasculitis cases are the same.

But what I can say is this: Being diagnosed so young makes us grow up fast. Whereas most kids are thinking about fun, rare disease patients are making sure we don’t get overly fatigued. When others might be considering which party to attend, we’re making sure we took the right medications that morning. And usually, we’re respectfully focused on our education, knowing we were granted an opportunity that not all patients get if they have severe symptoms at our age.

Like everything with this illness, college is a double-edged sword. The fact that we are sick in the first place isn’t fun, and it’s certainly not cool. But on the other hand, we can look back and be grateful for the excuse to stay focused.

Through the stress of vasculitis, I decided to make college a time for work instead of play. I knew that there would be plenty of time to enjoy myself in adulthood — and perhaps along with that pleasure would come greater health stability. Staying sober and hopeful is sometimes more rewarding than the alternative in the long run.

Today, I am grateful to be in remission, without crippling concern about what tomorrow holds. Though it was challenging, I gathered strength by forging ahead on the demanding path of higher education before my health was entirely stable. But I don’t regret that decision. It helped me feel as normal as possible under the unusual circumstances and let me continue with my life’s journey instead of being held back by vasculitis.

I control my disease — it doesn’t control me.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.