When I was in high school, I tried my best to hide my CF from my friends. When this put my health at risk, I knew I had to find friends who would accept me and to become a better advocate for myself.
When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health
Even though Trikafta saved my life, I am still dealing with the emotional trauma of being so close to death and missing the person I was before I got so sick.
After gaining weight on IV steroids to treat my cystic fibrosis, my self-image became distorted, and I developed anorexia. I realize that I am not my illnesses, but they are a part of my life that I can’t hide anymore.
Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
The hope that came with the authorization of two COVID-19 vaccines has been coupled with anxiety and frustration as I wait.
Despite letting negative thoughts get to me when I was younger, I learned to make the most of any situation. This positive mindset has helped me succeed in college, and I want to help pass along what I have learned.
When I feel anxious, I go for a run or do a crafting activity to relieve the stress. I used to think I didn't have time for this, but now I know that I need to make time to take care of my mental health.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.