Site Search

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.

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.

Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.

The physical symptoms of cystic fibrosis can be debilitating. But the emotional trauma brought on by hurtful comments, financial burdens, and anguish my loved ones have faced because of my disease has been just as painful.