Why I Continue to Write About IPF 6 Years After My Diagnosis
The days surrounding April 7 each year are emotional for me. On that day in 2016, I was diagnosed with idiopathic pulmonary fibrosis (IPF) at the young age of 28. Like many others, I’d never heard of IPF and knew nothing about this life-threatening and debilitating lung disease. Moreover, as an active young adult, I was oblivious to the fact that I could be diagnosed with a serious respiratory condition in my 20s.
I began writing this column shortly after I was diagnosed, which is hard to believe now. I have been a part of the BioNews family for nearly six years and have grown to know and love many rare disease patients who are also employees of this organization, which publishes multiple sites including Pulmonary Fibrosis News. Over the years, this column has given me a platform to advocate for those with IPF — a coping mechanism I didn’t even know I needed.
When I tell others about this column, I’m often asked how I find topics to write about. I admit, coming up with a topic is harder some weeks than others. But I learn so much from navigating life with a chronic lung disease, and I feel responsible for sharing those lessons with others, especially if they make life just a little easier for my fellow IPF patients.
That same feeling of responsibility is why I, along with fellow patients and Pulmonary Wellness Foundation founder Dr. Noah Greenspan, embarked on a two-year project to write a comprehensive book about living with IPF and other interstitial lung diseases. I truly believe that patients’ perspectives and knowledge are invaluable.
Another goal of this column is to discuss disease management, as only those of us with the disease can speak to lived experience. As patients, we are our best advocates, and our learning is never done — especially when our disease is rare.
Sometimes this column has been focused on simple tips and tricks, whether it’s how to manage the side effects of anti-fibrotic medications, or how to make activities of daily living, such as showering, easier. Other times it’s been a platform to process the emotionally and mentally difficult aspects of this disease, such as losing friends to IPF or facing either lung transplantation or palliative care options.
But in addition to these tough topics, I also share celebratory moments and opportunities I’ve received as a result of IPF. I intentionally try to write about things IPF patients can still do despite their lung disease, such as traveling, camping, or celebrating milestones and holidays with friends and family.
Regardless of the topics I choose to write about, I’ve always had three main goals for my column.
First, I want other IPF patients to feel less alone and have someone who can relate to their experiences. I strive to read every comment left on my columns, and it never gets old when someone shares that my words resonated with them, or that my writing helped them on their IPF journey in some small way.
Second, as mentioned above, I want to share what I have learned about living with IPF so that others’ experiences are just a little easier.
Third, and arguably most important, I want this column to demonstrate that the prognosis for IPF patients isn’t always accurate. While the data are outdated, a three-to-five-year life expectancy after diagnosis still pops up with a quick Google search, and this understandably terrifies those who are newly diagnosed. Please consider my experience, and this column, proof that you can live beyond those predicted numbers.
I’m grateful to have had this platform to engage with so many of you over the years!
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.