A chronic cough is the sound my illness makes
Coughing episodes sap my energy, and they embarrass me
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Living with pulmonary fibrosis means living with a chronic cough that doesn’t let you forget it.
I hate it. It feels like it’s slowly taking more from me than I realize.
When the cough spells begin, my body becomes rigid and tight. My breathing turns short and shallow. The force of the cough makes my head pound, my chest tightens, and my stomach aches from the strain. At times, when it goes on too long, I can’t even hold anything down.
When it finally stops, I am exhausted. My body feels sore, like I’ve been hit by a truck. My throat is dry and raw, and my head aches from the strain of coughing. I reach for my oxygen to try to regain my breath and a bit of strength. Quietly, I find myself hoping and praying that I can gather enough energy before the next episode begins.
Not an ordinary cough
This is not a simple cough. It isn’t caused by a cold or allergies. It is a chronic PF symptom that lingers and reshapes your daily life.
When people witness it, I can feel their discomfort over this symptom of a disease that I live with every day and that will likely persist. I wish people understood that my cough is not just exhausting and emotionally draining; it is also so embarrassing to me. When people stare at me while I’m coughing, I can’t help but wonder if they think I am contagious, especially after everything we all experienced during COVID-19. The last thing I want is to feel pushed away because of a symptom I cannot control.
My family reassures me that I have nothing to be embarrassed about. They have become deeply protective of my feelings and emotions throughout my illness. But I also need to learn to reassure myself.
I also need to be prepared for it. People often say, “You’ll get used to it,” but I don’t believe anyone gets used to a painfully disruptive symptom. Constantly trying to catch your breath, like a fish out of water, is not something a person simply adapts to. But I can be prepared, so fear or embarrassment of coughing episodes won’t overwhelm me.
On not getting used to it, but being prepared anyway
I try to keep my inhaler nearby during the early stages of an episode, and when the cough worsens, I also rely on a portable nebulizer that I carry with me at all times. And I use a backpack designed for my portable oxygen machine so I can carry the supplies I may need. Being prepared helps me feel more physically and emotionally in control when these episodes suddenly take over.
Living with pulmonary fibrosis has taught me resilience, patience, and empathy. Before my diagnosis, I never paid much attention to rare or chronic illnesses. Even when my mother was diagnosed with renal failure, I could sympathize with what she was going through, but I could not truly understand the physical and emotional weight of living with a chronic illness. I could see her suffering, and I wanted her to feel better, but I hadn’t experienced that kind of daily struggle.
I never imagined that one day I would be living with a chronic illness.
Now I understand my mother’s pain in a way I never could before. Chronic illness changes every part of a person’s life, and it is something I would never wish on anyone.
I will continue working to overcome the fear and emotional weight these coughing episodes bring. There is no guarantee that this journey will ever become easy, but I refuse to let fear define my life. Maybe not today, tomorrow, or even in the near future, but I hold on to hope that one day I will make peace with this part of my illness.
Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
James M Anno
I too suffer with the dreaded IPF cough. I am hoping the phase 3 trials of Haduvio go well. The company says if all goes well the results will be used to apply for FDA approval. Could be available in a year or so. I'm just hanging on to this as hope for easing my cough someday.
Susan
Ann, I could have written that article word for word and while reading it, I almost thought I had; good grief I certainly live it with this disease.
Your description of how it feels, the length of time it continues, the exhaustion afterwards as well as sometimes losing everything in your stomach because of it, is so point on. Like you, I travel with POC, portable nebulizer, and rescue inhaler, along with a silent prayer I can enjoy going and doing one small thing without an attack.
I’m sorry you’re experiencing the same episodes; I’m actually sorry for all IPF sufferers who are, or will, reach this point in the disease. It truly sucks.
David Bennett
Ask about Tessalon Pearls if you haven't, generic available. . Rx only, and they’ve worked wonders for me. I occasionally use them when out and about and one nearly every night at bedtime.
Jane Halsted
I guess this is good information.
I am waiting for a cure and hope it comes in my lifetime.
Tim Vanderploeg
I hate that you suffer from such a bad cough with your PF. I have a PF cough too, but not nearly as bad as yours. At least not yet. I found that Mullen leaf tea, two cups a day has helped ease my cough tremendously. You may have already heard of it but I wanted to share in case it might help you with you cough too.