The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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With COVID-19, a year indoors -- and online -- has brought up a familiar feeling that screen time has the potential to bring us hope and laughter. On the other hand, the internet can also convince us that the sky is falling.
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When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
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It's hard not to feel guilt for all those years my partner spent taking care of me as I got more and more sick from cystic fibrosis. This Valentine's Day, I'm not going to dwell on the past. I'm going to focus on how much we love and care for each other right now.
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I spent most of my life hiding the fact that I had cystic fibrosis. It was only when I fully accepted that CF was a part of me that I quit my self-destructive ways and began to enjoy life.
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Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.
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When you have a daughter with cystic fibrosis, your mornings become a tightly choreographed routine of treatments and getting ready for work and school. Add a sickness to it, and the routine becomes more complex, the pace more frenetic, and the worries more urgent.
