I was diagnosed with cystic fibrosis when I was about to turn 3 years old, so I do not know my life without this disease. As much as I fought it for years, cystic fibrosis is part of my identity and part of who I am. While I always viewed this negatively, I can now recognize that CF has made me resilient and strong, and given me a much different outlook on life than most of my peers. 

One thing I have always struggled with is the mental gymnastics of CF. The constant back and forth in my mind — sometimes thinking my life was going to be cut short due to this disease so I may as well live as fast and hard as possible; and sometimes thinking a new treatment may come out that would change that scenario completely — obviously, this was before Trikafta^®. 

I started struggling with my mortality when I turned 18 and graduated high school. It seemed like there was no real reason for me to go to college, have a career, or build lasting relationships because this disease was going to win anyway; so what was the point? I am sure some of this rationale was normal teenage angst and finding one’s place in the world, but having CF compounded it and sent me into a tailspin of anxiety and depression. This went on for five years or so. I tried everything possible — whether it was healthy or not. I tried therapy, medication, going to the gym, meditation, drinking, throwing myself into work, finding a hobby — trying to at least — but I was still nagged by CF in the back of my mind and what it meant for my future. 

I was constantly in and out of the hospital, anywhere from 3-6 times a year for 6-9 days at a time. The level of isolation, loneliness, and depression I felt while cooped up in the hospital is something I would not wish on my worst enemy. At this point, I could not work, and I had to withdraw from school and go on disability. It was a really low point in my life at the ripe age of 20. It stung even more because — deep down — I always wanted to get married, have a family, start a career, and lead a “normal” life, but that seemed like such a far-fetched dream that was impossible to achieve at the rate I was going. 

Then in 2019, Trikafta came out. When I first started Trikafta, I was so excited and hopeful, but I quickly experienced negative side effects. It gave me stomach pain and nosebleeds to the point I had to lower my dose and work my way up to the full dose. Eventually, I was able to take it at its full capacity and things were going great physically. I was finally able to stay out of the hospital for months and years at a time. I was able to go off disability, re-enroll in college, and I found a wonderful partner. I do believe Trikafta has impacted my mental health, however, as I noticed an uptick in my anxiety around the time I started taking it. Still — thanks to a wonderful support system — a great therapist, and a healthy combination of physical and mental health medications, I can finally see the light at the end of the tunnel. I have so much to look forward to now. Even when I have CF flare-ups, I do not find myself riddled with hopelessness anymore.  

All of this to say, I have come to realize that while CF is a huge part of me, it does not define who I am, and it has only made me a stronger person in the long run. Through a lot of trial and error, I can say that I am the happiest and healthiest I have ever been today.

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