Hiding My CF to Fit In Hurt My Health

I used to think that people would pity me and see me as weak, if I told them I had cystic fibrosis. Eventually, I learned that keeping this disease a secret was a burden I did not need to carry.

| 4 min read
Lisa Amsler

Growing up, I would say I had a normal-looking childhood. I played soccer, joined the swim team, attended all the school dances, and took trips with my friends. On the outside, I was bubbly, positive, and outgoing; but, on the inside, I was hiding this secret and lived with the fear of being judged.

My sister, Kelly, left (32), me (28), and my brother, Mitchell, right (30), in Cannon Beach, Ore.

I was diagnosed with cystic fibrosis at the age of 2. As much as it was a part of my everyday life at home, I hated sharing that side of me with friends and schoolmates because I felt like it showed weakness. I did my treatments and took my enzymes when it was convenient. I skipped weekend treatments if that meant being able to travel with friends. I lied that I was just “getting over a cold” every time I coughed and people around me questioned if I was OK. I downplayed my disease at every opportunity because the most important thing in the world to me at the time was fitting in.

When I was 18 years old, I moved 2,000 miles away from home to attend Trinity University in San Antonio. As a college freshman, I refused to stand out by telling everyone I had a chronic lung disease. Because doing loud breathing treatments in a shared dorm room on a hall with an open-door policy was anything but discreet, I resorted to barely doing them at all. I didn't want pity or judgment from anyone, especially from people with a limited understanding of what CF was. Who wants to be known as the sick girl? I managed to finish my freshman school year before CF and my denial finally caught up to me.

During the summer before my sophomore year, I was hospitalized for the first time. I spent over a week in the emergency room and, eventually, the intensive care unit before they could diagnose me with pneumonia. As much as I wanted to believe I was immune to the progression of CF, I learned the hard way that I wasn't. From then on, PICC lines, IV antibiotics, and chest physical therapy up to five times a day would simply be my routine for an average of 2-3 times a year -- even when I'm staying on top of my normal, daily treatments.

CF is a part of me, whether I choose to hide it or not, and I realized after my first hospitalization that I was carrying around an unnecessary burden by keeping it a secret.

I had built it up in my head to be this negative cloud that would follow me around, but as I began opening up to more people, it became clear that it really wasn't that big of a deal. I wasn't judged, pitied, or treated any differently for having this disease. I went from hiding my treatments entirely and avoiding the topic of CF to openly discussing my health and inviting my friends to visit me in the hospital during my weeklong stays.

My sorority pledge class at our college graduation.

Yes, sometimes I do have to turn down a trip if I know I won't be able to make time for my medicine. And yes, I've had serious FOMO (fear of missing out) when I'm stuck in a hospital bed attached to an IV pole. However, it's been a small price to pay for all the other experiences I owe to being in good health -- skydiving in Germany, seeing the Northern Lights in Iceland, and snorkeling in Belize. I am lucky to have gone as long as I did without a major hospitalization, but it was the wake-up call that I needed to finally own my life, my struggle, my story. I can't get those rebellious years back, but I can do a better job moving forward and that's exactly what I intend to do.

Me and one of my best friends, Stephanie, at CF Stair Climb.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Lisa was diagnosed with CF when she was 2 years old and got involved with the Cystic Fibrosis Foundation at an early age. Her whole family remains heavily involved, raising money for Amsler's Army and attending various events throughout the year in both Seattle where she grew up and Phoenix where she lives. Lisa works as an account manager for CVS Health and enjoys all kinds of adventure and travel in her spare time. She graduated with her bachelor's degree in communications and sociology and her master's degree in business.

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