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

Sickness Is Giving Me a Panic Disorder

Yes, sickness is giving me a panic disorder. Let me explain. No, there is too much. Let me sum up: Never knowing exactly what to do or who to call or what the protocol is with every new symptom, in a body that creates new symptoms annually, makes me long…

Not Everyone Has Access to Miracles

I don’t know if I believe in miracles. I know that what makes a miracle miraculous is its infrequency and lack of scientific reason, but I often wonder: How come some people deserve them while others suffer relentlessly? For anyone who doesn’t know a lot about cystic fibrosis treatment, a…

How to Be Better at Making Someone Feel Better

If I were a doctor, I would say hello and ask a couple questions about the individual first. That way, they would feel like they’re a person, I’m a person, and we are two people who can talk about health. I would not act like the doctor I spoke to…

To the Doctors Who Didn’t Listen

To the doctors who didn’t listen to me: You were wrong. I remember the time I arrived in the ER six years ago, a place I mostly refuse to go, and you said, “Go home. You have vertigo.” You were a female, which I thought would work in my favor.

Restoring Humanity to the Statistics of Illness

I am having trouble sleeping. Everywhere we look, it feels like the world is on fire (both figuratively and literally). And if it’s not in flames due to human negligence or greed, it’s certainly engulfed in political firefights. And the worst kind of political opinion is political opinion that isn’t…

I Am Not Your Sick Savior, and Here’s Why

If I die, will it make you better? This is the storyline that appears in almost every movie ever made about sickness. We know and love the tragic trope well, but how well we handle unwellness is most often captured by the Sick Savior Complex. No star-crossed sickness saga is…

A Conversation With Rare Disease Advocates

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