At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.
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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.
A chance meeting at a CF conference 12 years ago gave me one of the most valuable gifts: my CF Mama friend group. Since then, we’ve invested time in our friendship and supported each other through the laughs and the tears.
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.
Hospice care helped my daughter, Desirée, through her final days.
We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.
I was diagnosed late with cystic fibrosis. When I found out I had bronchiectasis on top of that, I was crushed. However, nine years later, my health is as good as it can be, and I’ve learned the value of fighting back.
When I became a nurse, I was determined to be punctual and reliable, and I excelled despite my cystic fibrosis. But on the advice of a CF doctor, I changed my career trajectory, which at first caused heartbreak, but eventually led to a leadership opportunity.
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.
Throughout my life with cystic fibrosis, I have marked many milestones. My most important one yet is holding a full-time job while managing my health.