Advocacy and Abnormality – a Column by Kristin Entler

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 secrets in the tunnel bridge. I don’t remember what game we…

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 disabled student, thanks to the Americans with Disabilities Act (ADA),…

“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 apartment’s white walls, and the volume is set to a whisper…

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 live, case numbers from the COVID-19 pandemic remain high, and medical…

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 the hype. Articles like this one from The Washington Post…

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 one, and sitting across from a doctor who was telling me…

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 system, especially before I was comfortable with my own diagnosis. I…

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 things would go differently. I always knew the pandemic wouldn’t end…

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 normal life. I am here, in part, to be honest, and to find connection within that…