The cystic fibrosis cough is normal — and in public, it’s embarrassing
How people can shame me for an everyday symptom of my disease
It’s the coughing. It’s always going to be the coughing with cystic fibrosis (CF). It makes everyone uncomfortable, whether they admit it or not.
Everyone who knows me knows I can have a pretty bad cough that can be loud, harsh, and drag on for a long time. It’s not easy to live with, but I’ve adapted to it. That doesn’t mean it’s easy for everyone else to hear or watch me cough.
Sure, gas is disgusting, but most people will laugh off a burp or flatulence. Coughing, though, seems to have double the awkwardness since 2020, when COVID-19 hit the United States. Despite people behaving as if the pandemic is over (it isn’t), they’re still uncomfortable at the sights and sounds of a hacking cough because it creates suspicion.
“What if this person has COVID-19?” “If they have COVID-19, why are they outside?” “What if they infect me with COVID-19?”
They’re all legitimate questions, and I can understand where they’re coming from. COVID-19 can cause just about every side effect in the book, or it can lie dormant to the point where you don’t know you have it. Although I know that I don’t have the virus, a random person in public doesn’t. To me, the pandemic has reinforced the same self-conscious frame of mind that I had growing up with CF.
An embarrassing and awkward past
As I write this, I’m on the Tobi Podhaler version of the antibiotic tobramycin. I’ve taken Tobi for a decade and a half now, and it’s been a benefit, helping me get rid of any Pseudomonas aeruginosa lung infections.
However, three of the side effects that I experience with Tobi are raspiness, a loss of voice, and, of course, a harsh cough. While they can be annoying, they let me know that Tobi is fighting off whatever is going on in my lungs.
When I was 13, my CF collided with my puberty in a cruel way. In that summer of 2006, I attended a summer program for boys entering the eighth grade. One day, I was asked to read aloud a section from a Langston Hughes poem in front of the class. As I stood to read, I began to cough — the attack of the CF cough.
When I finally got through it, I started to read, and my voice was as raspy as it was crackling. The teacher stopped me midway through and asked, “Are you a smoker? What’s wrong with you? You sound terrible!”
After I was done reading, I was excused to the bathroom while I held back tears from the pain and embarrassment I felt, the burn of shame in living with CF. Even a normal activity like reading can be difficult because of the cough. I found it easier to swallow my pride and push down my shame so I could just get through my day.
At times, I still feel like that same 13-year-old, just trying to fit in and be normal even as peers and adults cast me aside. While I’ve been embarrassed by more than coughing, the reactions to hacking are definitely the most persistent awkwardness I face.
If I’m in public and feel a sudden outburst of coughs coming, I’ll try to bury my mouth in my arm and suppress it so that I don’t spark fear and anxiety in others. I just want to be able to walk around and live my life without people looking at me as if I have COVID-19 or (still) asking me if I’m a smoker when I have a fit.
I have cystic fibrosis. The coughing is awkward enough. Please, don’t make me feel worse for it.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Janet Brunelle
Thank you for sharing this information.
Helen Palmiero
Oh Will, how I sympathize with you! I don't have CF but I'm the same way with my fits of dry coughing. Everyone looks at me too & just assumes it's Covid. Then when it's finally over, I cant catch my breath for a bit. I can also imagine your embarrassment at reading aloud at school. People can be so tactless! Just keep on taking your Tobi whether it makes you cough or not. Your CF is no one's business unless you want it to be. Again, you taught me things in this column. Keep on writing too - you inspire me. Much love, Helen