It’s Time to Stop Stigmatizing the IPF Cough

It’s Time to Stop Stigmatizing the IPF Cough
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The dry, persistent cough associated with idiopathic pulmonary fibrosis (IPF) is arguably the most difficult symptom of this life-threatening lung disease.

Pulmonary fibrosis is defined simply as scarring in the lung, which always is progressive in patients with IPF. Unfortunately, there is nothing simple about this disease, and the scarring that develops often triggers a persistent, hard-to-treat cough as overall lung function declines.

Since my IPF diagnosis four years ago, I’m considered immunocompromised. This means I’m more susceptible to viral or bacterial infections due to having an immune system that is weaker than that of my peers. As a result, I am always on high alert when I hear a cough in public, especially during cold and flu season.

The current global reality has significantly heightened my awareness of who is coughing around me, even though I’m rarely out in public these days. Because I do the same thing, I don’t blame others who look when I cough. But it is important that we destigmatize the IPF cough and make life more comfortable for those of us with the disease by educating others about it.

If you’ve ever had a prolonged bout of pneumonia or bronchitis, you can likely relate to how tiring a persistent cough can be. A 2011 study of cough as a predictor of prognosis reported that approximately 84% of IPF patients in the study had a chronic cough, though this number varies. For many IPF patients, coughing causes anxiety, fear, and exhaustion.

Layers of social implications also are associated with the IPF cough, especially when others make assumptions about it. Unfortunately, due to its persistent nature, the IPF cough often affects a patient’s quality of life and can leave them feeling very uncomfortable.

Everyone has become hypersensitized to coughs lately, even though the IPF cough is not contagious. As a moderator of the Pulmonary Fibrosis News Forums, I’ve heard stories of patients being treated poorly as a result of other people assuming things about their cough.

As a result, I thought it would be beneficial to debunk some of the most common myths about the IPF cough. Let’s talk about it and educate others to prevent the further stigmatization of patients like me who suffer this debilitating symptom.

Here are some myths:

  • The IPF cough is contagious. Unfortunately, I’ve been asked this during a coughing fit in the past. Sometimes it doesn’t matter how much I assure others they cannot catch the cause of my cough, they still move away from me, assuming they can get sick. If you know a patient with IPF or any interstitial lung disease, please help others realize that underlying pulmonary conditions often cause a cough that is not contagious.
  • The IPF cough can be controlled. Some believe our cough is short-lived and will stop soon after it starts, or that we can proactively avoid it. Both are untrue. Unfortunately, most patients experience a prolonged cough that causes their exhaustion, and few therapies relieve it. When I cough, my supplemental oxygen can alleviate it slightly, but how long it lasts is unpredictable. Similarly, there is no way to predict what might trigger a cough in IPF patients. Therefore, many of us cannot avoid coughing, and it can’t be controlled.
  • The IPF cough is painless. I have experienced people looking at me in disgust rather than with compassion when my cough persists. I wish others understood that the IPF cough is painful and causes anxiety. If we could avoid coughing, we would. Some patients cough so hard they pull muscles and feel pain throughout their back and neck.
  • The IPF cough responds to medications. As previously mentioned, occasionally my supplemental oxygen will relieve my dry, chronic cough, but it’s never a certainty, and I don’t know if it helps other patients. I now rely on various inhalers more than ever, which may alleviate coughing for a couple minutes, but no therapies seem to effectively eliminate it indefinitely.

These are only a few of the common myths or assumptions associated with the IPF cough. When possible, please help educate others about our cough and the importance of destigmatizing it, especially now.

***

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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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13 comments

  1. Angie says:

    Hi Charlene,
    Thanks for your article. I don’t have the cough thankfully and I hope I won’t develop it as it sounds horrible and exhausting and painful. In response to the myth that the cough is contagious, I think it’s important to remember that even though one can’t catch IPF from a person with IPF who is coughing, it is still quite possible for the person with IPF to have an underlying infection which could be contagious. It could be the beginning of a cold for example. That’s why anyone with IPF who is coughing needs to take the same precautions as anyone who is ill with an infection, so they don’t spread it to others.

    • Charlene Marshall says:

      Hi Angie,

      Thanks so much for reading my columns and reaching out via the comments. Grateful to hear you doing have the dreaded IPF cough, I hope that also remains for you! Yes, I agree with you: important to remember that any cough – even a dry cough associated with an ILD – could be the start of any sort of virus, so taking precautions is necessary. However, what is unnecessary is being unkind or hurtful to those of us who do have a non-contagious cough. Majority of IPF patients take precautions to protect others from their cough, even though we aren’t contagious, but the response from the general public can still be cruel and uncomfortable. There is a responsibility for the IPF patient, and a responsibility from the general public to not make assumptions or take precautions to protect themselves without ostracizing the patient 🙂
      Char.

  2. KATIE BEARDSLEY says:

    Hello Charlene thankyou for your form it is good to read about others experiences with IPF as i have recently been diagnosed with IPF and have a chronic cough that went away when i was on prednisolone but now i am off the steroids’ and my cough has come back as bad if not worse then before , i take reflux medication for the cough and it does help for a couple of hours but then comes back and i have very bad coughing fits that make me feel like my lungs and heart are going to come out of my mouth, i don’t go out very often but when i do people treat me like a leopard and i find i am spending most of my time out explaining to people that I’m not contagious so i go home again as soon as possible.

    • Charlene Marshall says:

      Hi Katie,

      Thank you so much for reading my columns and reaching out via the comments. I’m really sorry to hear you’re also dealing with this cruel lung disease, and pesky IPF cough. Interesting that prednisone suppressed it for you…

      I think educating others is so important, but I’m sorry it is left to the patient to do that. I’ve also endured the looks and treatment you describe when I cough in public (especially right now) and I’m sorry this has been your experience. Hang in there, and feel free to connect any time. Unfortunately, but also comforting to know, many of us truly understand this experience.
      Take care,
      Charlene.

  3. jaime manriquez says:

    hello young lady, love your comment about coughing in public, Well , in my case as you know is a productive one ,I have to be very careful not to let the phlegm out, I Agree with you our cough is harmless, but the peole don´t know that and they can be quite cruel. Hope you are great enjoying the eastern Canada summer here is pretty cold , only 8 ..love
    JAIME

    • Charlene Marshall says:

      Hi Jaime,

      So nice to hear from you — thanks for your note and for reading my columns! Glad it resonated with you, as this topic can be so tough for those of us dealing with IPF and a chronic cough. They sure can be cruel when assumptions are made I agree. Hang in there!

      Love,
      Char.

  4. Frydad says:

    My name is mike, retired disabled vet-ret RN! Athletic as health until last when the fatigue and the cough became too much! AfterPCP, pulmonary NP, pulmonary Dr was dx
    ICP! On meds finally
    Ofev cellcept Prilosec Flonase——-2 months so far! Good days bad days—69 so I will hang for a while and see doc and PFT’s! S/E not to bad, but it makes you feel different! But would like to live for a few more years, but looks like a bumpy road!

    • Charlene Marshall says:

      Hi Mike,

      Thank you so much for reading my columns and getting in touch via the comments. I appreciate hearing from you, though sorry to hear you’re dealing with this cruel disease as well. Being on the medications and the s/e certainly do contribute to how you feel, I agree. Hang in there and please feel free to write any time.
      Sincerely,
      Char.

      • Carol Rixon says:

        Hi Charlene my late husband had IPF but didn’t have a cough. He was 80 when he died and was not diagnosed until his mid 70’s. God bless you and I hope stay well for a long long time. Love Carol

  5. Carol Rixon says:

    Hi Charlene my late husband had IPF but didn’t have a cough. He was 80 when he died and was not diagnosed until his mid 70’s. God bless you and I hope stay well for a long long time. Love Carol

    • Charlene Marshall says:

      Hi Carol,

      Thanks so much for reading my columns and reaching out via the comments. So sorry to hear your husband had to deal with this cruel disease too! Thank you for your kind words, I appreciate them. Take good care, Char.

  6. ALLAN B. BYRON says:

    Hi Char,
    My real challenge at this time is the recurrent coughing, and constant phlegm secretion. I was enrolled in some double blind studies done in UCSF possibly for treatment, but everything was on hold due to the pandemic. I used to be taking Benzonatate for cough, and it works for a year, but i observed that I develop resistance. We need a medicine to control the persistent cough. If anybody has a suggestion, we sure appreciate it.

    Allan

    • Charlene Marshall says:

      Hi Allan,

      Thanks so much for reading my columns and reaching out via the comments. So sorry to hear about the challenge associated with coughing – it really does impact quality of life, doesn’t it? Some patients have had success with Gabapentin when it comes to controlling the cough, might this be something to try for you? Of course I’m not a physician, I’m just regurgitating information shared in our forums on threads about the IPF cough, similar to this one: https://pulmonaryfibrosisnews.com/forums/forums/topic/excessive-cough-during-sleeping-time/

      Hopefully the UCSF study reveals something positive for those of us struggling with the IPF cough once it can resume. Take a peak around the forums, there are some helpful suggestions/discussions pertaining to helping control the cough. Hope this helps!

      Charlene.

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