I’ve seen videos of people with cystic fibrosis, messaged other patients on the internet, and knew some as a child. But since the early years I barely have any memory of, I haven’t verbally spoken with a CFer.
I had a phone interview today. The interviewer kept coughing and coughing; barely able to get a word out at times. I thought she had the most horrible flu. Then I remembered mid-conversation the person who set up the meeting mentioned the interviewer has CF. It hit me: That wasn’t a flu cough. That was a CF cough. The very cough I had before my lung transplant nine months ago. It was surreal to hear what I must have sounded like. I got off the phone and reflected on the oddity of the CF community: how isolated yet connected we are.
“Cysters” and “fibros” used to attend day camps together until the doctors realized we were catching each other’s illnesses — cross-infection. Now, CF is a physically lonely disease. While other populations with diseases and disabilities meet for in-person conferences, camps, and mentor programs, CFers forge relationships through phones, online conventions, and Facebook groups.
The closest to CF socialization I got in my preteen and teenage years was occasionally making awkward microsecond eye contact with other masked patients in the hospital as we passed in the halls, hugging the walls to keep as far from each other as possible.
The online groups initially didn’t appeal to me. I hated seeing what others were going through — feeding tubes, ICU stays, antibiotic-resistant bacteria — and having to think that those things were an inevitability for me. But time passed, and I got a feeding tube, put ICU stays under my belt, and cultured antibiotic-resistant bacteria. The worst that could happen was I would get a transplant (I did) or die. I figured I’d almost seen it all, so I finally joined a CF Facebook group in college. Then three more. Then a dozen more. It became therapeutic. I was experiencing empathy rather than sympathy. Sometimes, I just need to break down and have someone say, “Me too.”
I joined groups about CF diets, for swapping tips on treating mycobacteria, for CFers in my area to connect, and for transplant support. We celebrate drug developments and personal victories, laugh about doctors and CF memes, advise about social issues and treatments.
Our “culture” includes taboos and a complex medical lexicon that dances off our tongues; few of us have sciences degrees, yet most are up to date on the latest medical research. We find ourselves teaching student doctors and nurses how to most efficiently do what we consider routine. We are capable and strong together.
We are friends. I’m friends with lawyers, a motorcycle club member, farmers, a microbiology researcher, Latvians, Canadians, Australians — all people with CF. Half my friends list on Facebook consists of CFers I’ve never seen in person. We would likely never be connected otherwise. Just as genetics connect blood relatives, a genetic mutation is all it takes for us to consider each other cysters and fibros. We have an indescribable feeling of togetherness despite our separation.
Though I’d love for it to be as simple as the above, it isn’t. Alongside the celebrations and the laughter, we mourn CF deaths and healthcare legislation that could lead to more deaths. Within our cultural traditions, we have ritualistic ways of memorializing the dead. Life goes on and one day, I realize a pen pal hasn’t spoken to me in weeks. I check their Facebook profile and find memorial posts on my cyster or fibro’s wall. I didn’t even know — we had no mutual friends. It happens every few weeks. The consequences of befriending those who are at high risk for an early death is one that wounds me more than a bacteria ever could.
But it’s worth the pain. The CFer spirit is often one of relentless determination, optimism balanced with realism, a drive to live as quickly and fully as possible, a mind that is pushed to mature before its time.
CF produces horrors and produces beautiful people. I’ve never regretted meeting a fellow CFer because they’ve taught me more about myself and how to live life than any other person. I would never want them to die without a friend who can empathize.
I don’t need much CF advice now that I’ve had my lung transplant. But I remain embedded in the community because I love its people. They’ve given so much to me, and I want to give back.
A CF parent messaged me yesterday to say his daughter regained her lung function after an intense infection. I whooped in the middle of a cafe and wiped away a tear. He was touched that I was so excited for his daughter, whom I had never met. “Of course. She’s my cyster, after all.”