Kristin Entler was diagnosed with cystic fibrosis at 6 months old, and first came out as LGBT+ several years after her diabetes diagnosis at 12 years old. She currently serves as poetry editor for NELLE, as access coordinator for Open Mouth Literary Center, and lives with her service-dog, Azzie, whose name is short for the Greek god of medicine. Entler can be found on most social media platforms @findmycure. She hopes her column “Advocacy and Abnormality” is a space for inclusion and solidarity for anyone living in a body that is often seen or treated as different.
“You don’t sound so good!” my dad says to the family Shih Tzu, Jasper. And my dad’s right: The little dude (as we affectionately call him) doesn’t sound great. “He’s been coughing on and off for a…
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“Do people with cystic fibrosis really call themselves ‘CFers’?” a friend once asked. “Some do, some don’t.” I told her about the shorthand terms I’ve seen used in the community, such as “cysters” and “fibros.” Personally,…
Every time I tune into the local or national news, I see another story claiming that everyone will either get or be exposed to COVID-19. And over the holiday break, I learned that five friends…
With the new year looming around the corner, and my school semester crawling to a close, I want to set my sights on all the things I’d like to do next year — attend my first in-person…
This week, the university I both attend and teach at returns from Thanksgiving break, and I’m coming to terms with the realization that I’m afraid of the coming holiday season. This isn’t a new phenomenon; I’ve had a lot…
I don’t remember why I said what I said to the little girl I had just met on the playground. “I have something called cystic fibrosis.” Maybe I was coughing or short of breath. Or maybe we were exchanging…
While the world could be more accommodating to people with disabilities, I’ll admit I feel guilty that I’m allowed to register for my college classes 48 hours before my nondisabled peers. This priority access is available to any…
“Do all my friends hate me? Or do I just need to get some sleep?” Stand-up comedian John Mulaney’s punchline cuts through the hum of nearby tree frogs. The light from the TV casts a blue glow on my…
Through the sliding glass doors and down the stairs of the medical plaza, the midday news played — muted, but with captions running — on the TV mounted across from the reception desk. The water fountain hummed. Where I…
When the U.S. Food and Drug Administration announced two years ago it had approved Trikafta (elexacaftor/tezacaftor/ivacaftor) for some cystic fibrosis (CF) patients 12 and older, I carried what I considered to be a healthy amount of skepticism about…
Three days before my first semester away from home, I sat in a sea foam green chair straight out of the 1990s. I was 20, six months shy of graduating to my city’s adult CF clinic from the pediatric…
The first time I had to drop out of school, I was in sixth grade. I had just been diagnosed with cystic fibrosis-related diabetes. My family and I decided we didn’t feel safe navigating insulin injections in the school…
I didn’t want to write about this yet. Of course, I also thought COVID-19 would be over by now. From the very beginning of the pandemic, I had hoped, like so many others in the chronic illness community, that…
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