The Importance of Sharing Our Stories During Pulmonary Fibrosis Awareness Month

Columnist Charlene Marshall reflects on key moments from her life with IPF

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by Charlene Marshall |

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I’ve been writing this column for almost six years. Throughout that time, I’ve had the privilege of interacting with other patients living with idiopathic pulmonary fibrosis (IPF), a progressive and life-threatening lung disease.

While IPF is considered a rare disease, it doesn’t always feel that way given how many IPF patients I’ve met. That’s why September’s Pulmonary Fibrosis Awareness Month is so important to me. Too many people suffer in silence with this disease.

For years I’ve been asking myself why so few people seem to know about IPF. The symptoms of this cruel disease are difficult to ignore, and without intervention such as oxygen therapy or lung transplantation, the condition will worsen until a person succumbs to it. It baffles me that despite this, the majority of people I meet have never heard of IPF or other interstitial lung diseases.

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While having this column as an outlet is therapeutic, it also gives me a platform to raise awareness, which is particularly important this month.

Sometimes I get tired of explaining IPF, and I can often sense people’s shock, sadness, or pity when they learn I’m living with such a cruel lung disease in my early 30s. I try to channel my emotions into writing in an effort to help others living with IPF.

At first, I wasn’t sure what to write about for this year’s PF Awareness Month. I had no doubt that my fellow columnists would produce some brilliant content, but I felt a bit stuck as I sat down to write. But then I thought that, since there’s so much power in our stories, I could use the awareness month to highlight some of the personal victories and struggles I’ve described in past columns.

Following are some of my favorite, or most meaningful, columns I’ve written over the years, which capture raw, vulnerable, and difficult moments — as well as some positive ones, too.

‘Do These Symptoms Mean My Disease Is Worsening?’

This column, from earlier this year, was difficult to write because I was publicly grappling with my disease progression. I was admitting not only to myself, but to all the readers of my column that my symptoms were becoming difficult to manage. I was looking for advice from others who’d experienced this.

‘The Hardest Part of Engaging in Social Support for IPF’

I wrote this February 2017 column within a year of being diagnosed and after the loss of my first IPF friend, which cut deep. As I’ve tried to do in many columns over the years, I attempted to educate others by writing about this loss, as there was no other way for me to make sense of it.

‘Please Give Me Grace; I Am Trying My Best’

This column, from March 2017, came from a place of physical and emotional exhaustion. I vividly remember sitting down to write and needing to get so much off my chest. I was struggling to find a balance between being independent and accepting help from others, and it was wreaking havoc on some of my friendships. IPF affects all aspects of our lives, and our relationships are not spared.

‘Despite IPF, We Should Find Joy in the Small Things’

Choosing joy is something IPF patients can always do, no matter how difficult things get. In this June 2017 column, I reflected on a couple of small tasks I completed with friends, which brought me great joy in the face of this cruel illness.

‘Lung Disease and Transplantation: The Harsh Realities’

One part of writing I pride myself on is educating others about every step of the IPF journey, including lung transplant evaluation. In this August 2017 column, I discussed the harsh realities that come with such an intense and life-altering surgery.

‘Being Vulnerable With a Chronic Illness Can Be Beneficial’

Writing about your life with chronic illness forces you to be vulnerable. My goal in writing this 2020 piece was to show others that vulnerability can benefit us and others if we’re brave enough to open up.

Which of these columns resonates most with you? Please share your thoughts below.

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.


Christine McCann avatar

Christine McCann

Before I was diagnosed I had never heard of IPF also, many people have it, what I find even more disturbing is the lack of care that a lot of people seem to get, Dr.'s who are not explaining and/or prescribing beneficial info and medication/oxygen to reduce the progression. Also the number of people who go to general practitioners and not Pulmonologist for care. This is a great forum for them to get info but not if they don't know it is available. It is unfortunate but these days one has to monitor thier own health and do the research to stay informed.


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