Having a Rare Disease Is a Lot Harder Than You Think
Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one. Having a rare disease means strangers telling you what your rare disease…
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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Why My Recent Happiness Makes Me Wonder If I’m Secretly Ableist
“I am so happy right now,” I say to my partner as we set off on a drive on an ordinary Sunday. I haven’t said this much in the last year, although I’ve tried.
I’m Thin and Sick, Which Gives Me Power to Be a Dangerous Bully
It’s 10:25 a.m. and all I’ve had is coffee. Last week, I wrote about my struggles with cystic fibrosis-related digestive damage and my increasingly fragile colon (which is not a colon anymore, but…
Denying My CF Is Making Me Hungry
I went to bed hungry last night, and I woke up scared of food. This is my new reality. Although this is an old-new one I’ve lived (and lived to forget) time and again,…
In Dance and Other Matters, Representation Counts, but Not Enough
I am going to write something no one wants to hear: Honesty is best when it’s pretty. Sometimes I am that person. I can smile through the suffering. I can point my toes while…
Confession: Vaccine Politics Are Adding to My Sadness
I am in a bathroom feeling sick, writing about being sick, not wanting to be sick. I don’t want this to be my life or what I’m writing about. I get sick of saying…
Why I Broke the ‘6 Feet Apart’ Rule
Staying 6 feet apart is not new to me. It’s not new because I have atypical cystic fibrosis and have been doing it for years. Most people know about this rule by now. They’ve…
I’m Already Scheduling Surgeries for Next Year
Today, I woke up and left for a doctor’s appointment. It was 8 a.m., and my eldest daughter was coming with me in case I needed an interpreter. I’m Deaf and fluent in American…
Honest Question: Am I Losing My Mind?
Who would I be if I lost the parts of me that make me … me? At the height of my back pain — which is off in the old place, on in…
Maybe I Should Stop Writing This Column
I don’t want to write this column. OK, for the sake of my editors, let’s be clear: I love this column and this company and this job. I am so lucky to have…
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…
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…
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