You wouldn’t know I have cystic fibrosis by looking at me. The condition affects my lungs and pancreas, making it hard to breathe and gain weight, but I don’t looklike I have an incurable disease.
I was raised to be independent with my healthcare, which was one of the best things my parents could have done for me. By the time I was getting ready for college, I’d been sorting my weekly pill cases independently for eight years. During high school, I’d sometimes go to doctors’ appointments alone, so any questions were directed to me, and not my mom. Eventually, I’dbe able to live on my own.
But when it came time to choose a college, I knew being close to home was important for my health. I picked Towson University in Maryland, which is 45 minutes from my parents’ house and about 20 minutes from Johns Hopkins Hospital. It was far enough that I could have my independence, but close enough to my parents if I needed them. And, there were a few times I did.
I used to be very stubborn. When I got progressively sicker in college, I ignored it. I was an academic overachiever, and I wouldn’t let my disease slow me from doing everything I needed to do. I wanted the full college experience.
By the end of my sophomore year, I knew I was sick, but I had too many commitments to put my health first. I had finals to study for, a position as a news editor at the student newspaper, and of course, a social life.
After my last final of that year, my mom had to drive me to Johns Hopkins’ pediatric emergency room. I had barely been able to make it back to my dorm room after the test. My lung function had dropped significantly. I couldn’t believe I’d mustered the stamina even to take that last final.
One of the hardest things about transitioning to college as someone with cystic fibrosis is committing to your health. But it’s also one of the most important things. You have to keep up with your medication and see your cystic fibrosis doctor regularly. You also need to give yourself time to rest. Even now, at nearly 30 years old, I still have a hard time knowing my limits.
Looking back on my years at Towson, I wish I’d been more open about my cystic fibrosis. Every time I had to turn down a social event because of my condition, I used to feel guilty because I thought my friends couldn’t understand. But now I know that my health comes first. I’d rather skip out on an event or two than miss more of my life. Seems like the better choice, right?
Alissa Katz is a 29-year-old who was diagnosed with cystic fibrosis at birth. Her friends and coworkers all get nervous to send her text messages because she’s a human spelling and grammar checker. She loves New York bagels more than most things in life. This past May, she was The Cystic Fibrosis Foundation’s Great Strides ambassador for their New York City walk. To read more about Alissa’s cystic fibrosis progression and to donate to the Foundation, click here.