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.
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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.
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.
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.
After opening up a time capsule that I put together when I was 7 years old, I decided to write my childhood self a letter, explaining how great her life is when she is 30.
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?
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.
After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.