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.
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. It really is so hard to be misunderstood! To be clear, that was sarcasm. And to…
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 is hurting or how to “handle it.” Chronic pain is for people who get reiki and…
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 mentally tough,” and I wanted to reply, “I’m not.” Not right now, anyway. I constantly feel…
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? Well, in this case, it is. The inability to wear a mask to protect someone like…
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 “sticking to my lane” means medicine, motivation, and myopic magnifications of my own fragile frailty (physically…
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 sufferers of the world, I am going to lose my mind if another person comments on…
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. After my fundoplication surgery in 2015, I couldn’t eat anything denser than pudding while the swelling…
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 low. They ran into a large group of friends in the neighborhood whom we love, and…
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 today,” I told my partner, after a long morning of telehealth and treatments. “I just…
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 CF,” she said. “They have a certain look.” She was a nurse who’d been through med…
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