Teens with Rare Diseases: Choosing a College

Five years ago, I faced a decision that would have a major impact on my life. I was a senior in high school, and like many of my friends, I had to choose which colleges to apply to. For most high school students, searching for colleges consisted of looking at what majors were offered, what clubs or sports were there or what extracurricular activities were available for students during their free time. But there were other things that I also had to consider. I wanted to go to school and be able to experience living away from home. But I didn’t want to move too far away from home, in case I experienced any medical problems related to my disease.

I ended up attending a university that was about an hour away from my family and doctors. I loved my college and all the experiences that I had. While I was away at school, I did have problems associated with my disease come up and it was nice to not have to travel far to see my doctor.

I still had to deal with seeing new doctors when I got sick while I was away at school. This was a scenario that made me uncomfortable quickly. Sometimes doctors would have no idea what my disease was, and I would have to tell them. Other times, they would ask me why I took a high dose of arthritis medicine, and then I would have to explain that it was to try to prevent colon polyps from growing. Every time I saw a new doctor for a simple cold or sinus infection, I had to tell them my colon story.

I get interesting reactions from people when I tell them that I have Gardner Syndrome. But this is especially true when I see new doctors. Personally, I don’t mind doctors that joke about colons or colonoscopies because that’s how I am. But I can’t stand it when people tell me that they feel bad for me! I liked to avoid awkward encounters as much as I possibly could with new doctors.

Now that I have shared my experience, here are some tips for choosing a college:

• Research: Besides seeing which colleges offer majors that you are interested in, research which hospitals are nearby and whether there are doctors in the area who are knowledgeable about your disease. Even consider asking your current doctor for advice about this: they may know of other doctors who know about your disease.

• Getting Involved: Even though I didn’t mention this in my story, it’s also good to go to a college that has groups that peak your interest. Whether you have a hobby, enjoy a particular subject or want to try something new- join a group. You’ll make new friends and they’ll support you. And when you’re away from home and family, it’s good to have a support system in place to help with emergencies and even just gathering missed school work.

• Majors: Don’t choose a college unless they have programs that you’re interested in pursuing a degree in. College with a rare or chronic illness is hard enough, you’ll need to be motivated to pull through it–and if you’re not interested in what you’re studying, you won’t.

• Going to New Doctors: When you move away from home, there’s always a possibility that you’ll have to see a new doctor for common health problems that may not even be associated with your disease. If a doctor asks you about your disease, don’t be afraid to talk to them about it. You never know, you could be helping someone else- and you’re raising awareness for your disease.

• Stress Breakers: College can be stressful at times and so can living with a rare disease. It’s important to have ways to deal with your stress. Some colleges have recreational centers that offer a variety of services. If your school has a program for massage therapists, you may be able to get a weekly free or affordable massage. Most colleges have pools that you can work out in or relax by. Even just going to parties or out with friends can provide some normalcy and improve your college experience. 

About the Author

Alyssa Zeigler is a recent college graduate from Western Washington University. She has Gardner Syndrome and comes from a family that has a history of hereditary colon cancer diseases. She has a degree in psychology and hopes to help people who are living with rare diseases. She is currently living in Bellingham, where she works as a living skills specialist. In her free time, she likes photography, knitting, spending time with friends and writing. Alyssa is the author of the memoir, The Waves of Life: Going Against the Tide and the blog Learning to Live by Defying the Odds (https://alyzee17.blogspot.com/).