The Top 4 Words I Use to Describe IPF
I have tried countless times to describe idiopathic pulmonary fibrosis (IPF). In 2019, I tried to explain what it physically feels like, but I still can’t find words that adequately convey how hard living with IPF is, especially as it progresses. I never do the experience justice.
Since most young adults don’t have to lug around supplemental oxygen like I do, I’m often asked questions about my disease, such as, “Can you become addicted to oxygen?” and “Does IPF hurt?” I’m particularly sensitive to answering, “What do fibrotic lungs feel like?”
Describing the physical effects is hard, so I try to capture the experience of living with the disease instead. My answers vary depending on how I’m coping, because, like most chronic illnesses, IPF forms a roller coaster of emotions. I experience high highs and extreme lows, so the words I use depend on how things are going at the time.
Many readers know that I co-moderate the Pulmonary Fibrosis News Forums, and love to interact with patients, caregivers, researchers, and advocates on the platform. From reading others’ posts, I know many have also been asked to describe their IPF journey. Even among fellow patients, the answers vary widely.
Following are the top four words I use to describe IPF.
IPF is constant — no matter what we do, it’s always there. I often try to explain this by contrasting IPF with an injury. For example, if you break your leg, you’ll likely be ordered to rest until it heals. Sleeping, elevating the leg, and taking pain medications should offer some relief. Unfortunately, even with rest, an IPF patient never catches a break from symptoms like shortness of breath or fatigue. Our lungs never recover or get a break from working overtime due to the fibrosis.
Sadly, I’ve lost many friends to IPF, and it never gets easier. It’s also often unexpected, as this disease is unpredictable, and many factors can trigger an acute exacerbation. I have learned to value the quality of moments over their quantity, which I’ve written about in previous columns. While no one knows when their time on earth is up, living with a life-threatening lung disease makes it a little more unpredictable. I feel completely shattered whenever I learn about a friend who has died suddenly as a result of their illness.
A disease that slowly steals a person’s basic ability to breathe is nothing less than cruel. Like many other chronic illnesses, IPF doesn’t discriminate by age, either. While this disease typically affects people over 60, any demographic can fall prey to its awful symptoms of dyspnea, fatigue, and a chronic, dry cough.
As difficult as it is to admit, IPF is an incredibly limiting disease. As the lungs struggle to take in enough oxygen to supply the body, our physical abilities diminish, and intense fatigue sets in. This limits our ability to feel productive or accomplished, as even the smallest tasks can become difficult as the disease progresses.
I’m curious to hear from my fellow patients. What words would you use to describe IPF, and why? Please share in the comments 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.