I Did Everything Right, So Why Did I End Up with Pulmonary Fibrosis?
As I sit down to write this column, I am having a difficult day. Following a recent column about vulnerability, I heard from many readers who said my words encouraged them to express their own vulnerabilities. As a result of that feedback, I want to share that today I am struggling with the question of why. Why was I diagnosed with idiopathic pulmonary fibrosis (IPF), a fatal lung disease, as a young adult?
Since my IPF diagnosis in early 2016, and during the subsequent years of learning to live with it, I made a pact with myself that I wouldn’t ask why. We have no control over the cards we’re dealt in life, and sometimes the only choice we have is to face adversities head-on and do something positive with the experience.
Becoming a columnist for Pulmonary Fibrosis News was one of the best things I could have done following my diagnosis, and I have many online friends to thank for this experience and the positive opportunities that have emerged as a result. However, that doesn’t mean I can’t also struggle with why this happened.
When speaking to others about my diagnosis, they typically have many questions related to my childhood. They ask if I lived in a home with possible exposure to toxicities such as black mold or cleaning chemicals, and my answer is always no. My mom always kept a clean home, and our house was inspected annually for damage and hazards. She regularly kept up with things like changing the furnace filter and cleaning the lint traps in the dryer, so to my knowledge, there were no known household products or lung hazards that could have contributed to my development of IPF.
Another topic people ask about is secondhand smoke exposure. While I was around this occasionally as a child due to extended family members smoking, I never lived in a home where this was prevalent, and my exposure was minimal. We are constantly reminded about the dangers of regularly inhaling secondhand smoke. Compared with some friends whose parents smoked regularly, my exposure was minimal. So I can’t help but wonder why I ended up with IPF.
Although it’s different than IPF, developing pulmonary fibrosis (PF) as a secondary illness isn’t uncommon. For example, I know several friends who ended up with PF after radiation or chemotherapy treatments for cancer. I also am asked about whether I have an underlying autoimmune condition or had a chronic illness as a child that could have contributed to the development of IPF in young adulthood. I say no to this, too. Aside from the occasional ear infection and typical cold or flu viruses, I was a healthy and active child.
As a co-moderator of the Pulmonary Fibrosis News Forums, I am privileged to listen to many stories from our members and to offer my support. Some of those stories involve questions about familial PF and genetic links to this disease. Some people are affected by this cruel illness across several family members or generations. Because of this, it wasn’t a surprise that my diagnosing physician asked about my immediate and extended family’s history with lung diseases. While some diseases in my family may predispose me to a greater likelihood of developing them, no one in my maternal or paternal family had to deal with interstitial lung diseases. So why has this started with me?
Despite having many questions about why I ended up with this cruel lung disease as a young adult, I’ll likely never have satisfactory answers. Sometimes this is hard to accept because I wonder if I did something wrong. If that were the case, I’d like to identify what it was to ensure that others don’t repeat it. However, there are no known links to anything I did or was exposed to during my childhood that could have caused this fatal lung disease, and I need to accept that. It doesn’t mean that I can’t occasionally ponder the question of why this had to happen, but the important thing is to ensure that I don’t get stuck on why.
When I was first diagnosed with IPF, I considered myself unlucky. However, due to the friendships I’ve made, opportunities I’ve had, and lessons I’ve learned, this isn’t true. Remembering to be grateful every day helps me to cope with having a terminal lung disease as a young adult.
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.