Blog

Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.

Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta^®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.

Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported. 

As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.

I suffered a great deal of damage growing up with cystic fibrosis in a small Appalachian town — physically and emotionally. But with a lot of hard work, I have been able to overcome some of the emotional scars.

I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.

Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.

My parents made sure that I enjoyed my childhood despite my health struggles with cystic fibrosis. They focused on making sacrifices and hard decisions, such as relocating to be near my clinic, and never letting me brood over my prognosis.

Dance was my life, but I had to give it up when my health was in decline. I then found a new way to express my creativity through poetry.

Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me. 

I had never heard of cystic fibrosis until I received my diagnosis — but learning how to navigate my CF prepared me to advocate for my husband’s medical care and helped me grow as an artist.

I have answered questions from many about what cystic fibrosis is, but the question that I really wanted to address was: why do I believe I have CF?