Does Everyone With CF Have Body Dysmorphia?
I have gained weight. I’ve been trying to gain weight for years, kindly encouraged by my CF clinic. Many might find it odd that aiming for a mid- to upper-range BMI is a goal…
Life in the Grey
— Bailey Anne Vincent
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 www.catchingbreaths.org.
Featured Post
Many with cystic fibrosis can barely afford to stay alive
It’s extremely expensive to have cystic fibrosis (CF), as I do. It’s extremely expensive to have any chronic illness. It’s extremely expensive to be sick. I’m beginning to wonder if the system…
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Putting Body Image Issues Behind Me: A #ScarPositive Story
This is my back. (Courtesy of Bailey Anne Vincent) My back is old. I’m not old … but my back is. Or at least that’s what my radiologist said after reviewing…
Diagnosis Privilege Can Be a Form of Discrimination
Privilege. Everywhere we look, we see the word privilege, and it’s hard not to feel attacked or defensive for what we feel we can’t control, right? Poor me and my white, thin, cisgender body.
Why Am I So Ashamed of Chronic Pain?
I have never liked the term “chronic pain.” Or at least I never used to identify with it. To me, chronic pain was something hashtagged online for those who don’t know why their body…
I Need to Give Up on Giving Up
Sometimes I want to give up. This is awful to say and even sillier to admit. But it’s something I’ve been repeating more and more lately. Someone recently asked me for “tips on staying…
I Don’t Want to Die Because You Don’t Like Masks
Wear a mask for me. The more I see friends post anti-mask passions as if they were a political statement, the more I wonder if they’ve ever met me. It’s not about me, right?…
We Need Better Representation in the CF Community
As a health writer, I hesitate to cover topics that don’t fit directly into my “brand” because it’s bad business. I’ve cared about human rights for as long as I’ve been a human, but…
Cystic Fibrosis and Herpes Are Not the Same Thing
I don’t have herpes. I need to clarify this. I don’t have herpes, or Hep C, or cancer, even though many seem to think I do. Although I empathize with the Herps and Hep…
Death Is Not a Good Diet Plan
If I die from anything, it’s going to be food. I have gone without food for long periods of time. It’s something many people with cystic fibrosis or other chronic illnesses know too well.
What Recent Exposure to the Virus Means to My Daughters
I’m supposed to stay away from my children. They may have accidentally been exposed to the coronavirus, but we won’t know for sure for a couple of weeks. The chance they were exposed is…
I’m a Dancer but I Can’t Walk Right Now
My body doesn’t work. This isn’t new information. But every time I get new information about a new way it doesn’t work, I feel a surge of emotion. “I think I’m sort of depressed…
Has the Face of Cystic Fibrosis Changed Forever?
It’s Cystic Fibrosis Awareness Month, and I’m not aware of what that means anymore. I remember the first time I told someone I was being examined for cystic fibrosis. “You don’t look like you have…
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