Sometimes I Am Ashamed Of My CF Cough
In Cystic-Fibrosis.com's Cystic Fibrosis In America Survey, 72% of patients reported experiencing a frequent cough, and 32% said that it's the symptom that affects their daily life the most. When people think of CF, they might think of coughing as the foremost symptom, but fail to understand how much coughing can truly impact your life.
What is a CF cough?
A CF cough is unique--to say the least. In my own experience, my cough is very wet and productive, producing thick and sticky mucus. It is not pleasant to hear and I’ll be the first to admit that. It is also chronic and very hard to stifle or control. Even in periods of stability, there’s always some level of coughing.
In addition, my cough can often keep me up at night and interrupt my sleep, and occasionally lead to episodes of vomiting during exacerbations. For many women with CF, chronic coughing can wreak havoc on the pelvic floor muscles and lead to varying degrees of urinary incontinence.1 I have definitely been one of those women. And those are just some of the ramifications of living with a CF cough.
Cough anxiety is real
Although the physical aftermath of chronic coughing is difficult, the anxiety about worrying how my cough bothers other people is sometimes worse. I know I shouldn’t care--but I do. I care that people (mostly strangers or people I don’t know well) will become annoyed listening to a never-ending cough. I also care that they might think I am contagious or “disgusting”.
There have been so many moments that have been infiltrated by my cough--quiet movie theaters, important school exams, and crowded social gatherings where I am not the center of attention and yet my cough steals attention. I try to be considerate, but my cough has other plans. Alas, in certain situations, my cough gives me anxiety and sometimes I am ashamed to be its owner.
Especially during exacerbations, I often feel a sense of relief when we get home and I can cough freely without worrying about others’ reactions. I don’t have to stifle my cough with tiny sips of water or steal a perfect moment to let out a coughing attack during a robust round of applause.
Trikafta changed my CF cough for the better
After starting Trikafta, I quickly realized that my cough significantly decreased. Expecting coughing attacks following simple tasks, it felt unsettling at first. Periods of silence filled our house and it was eerily quiet. In the past, the sound of my productive cough meant I was at least attempting to clear my lungs.
In some ways, it was comforting to know my cough would eventually provide some relief at home. Thanks to Trikafta, it’s different now. The frequency of my cough is different. The actual sound of my cough has changed, as well. And most importantly, the public anxiety as a result of my cough has gotten much better.
My almost-three-year-old even noticed the difference in the intensity and frequency of my cough. Whenever I have a coughing attack or a bad day, he now asks, “Mommy, you OK?” Whereas before Trikafta, he was so used to it it didn’t strike him as abnormal. It was just how his mommy spent her days--coughing. It makes me happy we have achieved another slice of “normalcy” in our days--another freedom to be celebrated.
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Have you (or a loved one) been experiencing any negative side effects from Trikafta?