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.
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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
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.
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.
As I continue to realize the benefits of Trikafta® and my daughter grows up and needs me less, I feel as though I’m losing key parts of my identity — being a person with cystic fibrosis and a mother. However, I’m also finding I have room to let myself grow and explore different sides of myself.
Learning that my daughter has cystic fibrosis has been a struggle for me and my family, especially as I deal with postpartum depression.
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.
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.