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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I don't make many plans anymore, because having cystic fibrosis means I never know how I'll feel from one day to the next or what I'll be capable of doing physically.
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Cystic fibrosis has been a challenge to me, but I've been able to blossom nevertheless.
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I've found it hard to cope with CF as I have gotten sicker, and loneliness comes about in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.
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CF complicates even the simplest-seeming routines. But it also has helped us learn to listen to be strong, listen to each other, and love one another better.
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In an ableist society, sometimes you just have to ignore comments that make you feel worthless for not working. If I had the chance, here is what I would tell people who judge those with an invisible illness.
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Cystic fibrosis, life expectancy, and my struggle with the “seize the day”-paradigm.