‘I’m Not Contagious’: Educating Others About IPF-related Cough

‘I’m Not Contagious’: Educating Others About IPF-related Cough

Idiopathic pulmonary fibrosis (IPF) has many pesky side effects. While many are invisible, such as dizziness, muscle pain, and shortness of breath, some are visible, like the chronic cough that accompanies this life-threatening lung disease.

Sometimes, patients with IPF experience a productive cough and are able to move excess phlegm around in their lungs, while other patients deal with a chronic dry cough. I have been dealing with IPF for three years now, but the chronic dry cough only began within the last year. When my cough is persistent, I constantly have to clarify to others that I am not contagious.

Oftentimes, we’re quick to judge others, and unfortunately, I think this is one of our worst qualities as humans. Following my diagnosis of IPF, I’ve noticed people making judgments more than ever before. I remember having a conversation with a friend, who is another young adult with a pulmonary condition, about someone who judged her for parking in a disability spot.

The lady made a comment, informing my friend that the spot she had parked in was for those with disabilities. My friend had no response at the moment because she was in shock. She then pulled out her portable oxygen concentrator, hooked it up, and walked away. My friend hoped that if she kept her negative comments to herself but made her disability visible, the lady would think twice before passing judgment in future situations.

Recently, while in the waiting room for a non-medical appointment, my dry cough flared up and I had to navigate a situation in which judgments were made. Initially, a lady and her young child watched as my cough progressed and I struggled to catch my breath. However, observation soon turned to annoyance, as communicated by her body language.

She then reached into her purse and pulled out a bottle of hand sanitizer. When my cough began to let up, she let out a loud sigh, as if to tell me she was frustrated without verbalizing it. I was uncomfortable in the situation, but there was nothing I could do in that moment to stop my cough.

Recognizing that she was frustrated with my nagging cough, and seeing her take the precautions to avoid getting sick, I pulled out my Vogmask and put it on. She then informed me, as politely as she could, but in an annoyed voice, that I should consider staying home with such a cough.

Sheepishly, I told her that my cough is due to a fatal lung condition called IPF and that she and her child could not catch it.

I further explained that, due to my compromised immune system, I was significantly more at risk of catching a respiratory virus in that waiting room than she and her child were, which is why I put on my mask. I clarified that applying my mask was not to keep the two of them from catching my cough, and reiterated that I was not contagious.

In the moment, I’m not sure the lady believed me, as her body language didn’t seem to soften. In an effort to smooth things over and eliminate the awkwardness in the room, I tried to empathize with her, letting her know how much coughs scare me when I know others might be sick. This was the trick to get her talking, and then came the opportunity to educate her about IPF.

While the initial moments of this conversation were very uncomfortable, I ended up having a lot in common with this woman who was initially passing judgment on me for my dry cough. When she asked if there was any way to get rid of IPF, I told her that the only option is a double lung transplant.

Surprisingly enough, her brother had received a kidney transplant, and she is a very strong advocate for organ donation. This was the common ground we needed for understanding and empathy to grow. In that moment, I realized that justifying my cough and telling others that it isn’t contagious wasn’t enough; I needed to add a layer of education, if the opportunity allowed.

As patients with IPF, it can be easy to respond negatively to judgments or comments from strangers, especially when we’re already not feeling well. However, it is also important for us to educate people on the symptoms of our disease, largely by identifying that our cough is not contagious to others.

As a result of this conversation, I will be trying harder to educate others about IPF and its symptoms.

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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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