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.
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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.
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.
My experience traveling with cystic fibrosis has taught me that a chronic illness should never slow you down. It may require extra planning and packing, but it’s worth it and definitely doable.
After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
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?