Life in the Grey – a Column by Bailey Anne Vincent

breaking up, doctor mistakes, mask, body image, walk, pre-existing condition, perspective, slowing down

Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see

I Want to Break Up with My CF Clinic

I might break up with my CF clinic. It’s not them, it’s me. They are doing a good job. My CF doctor is fine. My nurses, dietitian, and support staff are really cool. And everything is basically OK. They’re nice people. It’s fine. The problem is, I’m not sure what…

Our Colons Need Your Help

This column is about colons. Someone needs to be studying the prevalence of colorectal conundrums in people with CF and correlated diseases, especially those in their late 20s and early 30s. The number of messages I get from friends and strangers about colons is miles long (possible colon pun). They…

I Don’t Identify with the Word Disabled

I’m going to say something many people won’t like: I struggle with the word “disability.” In the eyes of society, I am technically “disabled,” but that doesn’t stop me from struggling with the term. If it isn’t illness keeping me in and out of the hospital (consistency is not my…

I’m Worried Sick About My Family

At night I lie awake and I worry about you. I worry if you’ll drive home safely that night. If the ache in your chest is really a ticking time bomb, rather than a proton pump inhibitor problem known by most. I worry because I love, and I love…

Choosing Scars, One Tattoo at a Time

My tattoos hold more stories than my scars. In a way, my tattoos are my scars — they’re just the ones I chose. After almost every major medical hurdle, I’ve decompressed through ink. It’s a way of choosing the needles that hurt me, instead of having them forced upon me.

Do You Feel What I Feel?

I am going to explain what it’s like being in this body. But before you read this, you need to know it’s not because I have a “woe is me!” attitude or want condolences or pity. I am lucky to have this body. This body is lucky to have me.