The Pros and Cons of Disclosing My Disability
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.
Advocacy and Abnormality
— Kristin Entler
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.
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I graduated from my MFA program! Now what?
This past spring, before graduating from my Master of Fine Arts (MFA) program in creative writing, I had one last meeting with my adviser. We connected via Zoom as I sat on my back…
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My Disabilities Grant Me Accommodations, but Give Me Guilt
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…
I’m Learning to Accept My Body’s Sleep Cycle
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Returning to the Clinic Means Lung Test Anxiety Again
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…
Trusting a Future Where I Do More Than Just Survive
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…
Questioning the Psychology of Need
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…
The Pandemic Has Shown Us That Accessibility Isn’t Impossible
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…
We Need to Reframe Freedom Amid the COVID-19 Pandemic
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…
Writing Through It: Why I’m Here
It’s been a long time coming for me to write directly about my life with cystic fibrosis in a body that gives me no choice but to balance illness with society’s definition of a…
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