As a patient living with idiopathic pulmonary fibrosis (IPF), I can’t count the number of times that close friends and family members have asked me to describe what this disease feels like. While I do my best to share my experience with IPF, I’ve been unsatisfied with the explanations I’ve given them. I have a hard time putting into words the physical challenges of IPF and the panic I experience when I’m breathless.
If you’ve ever felt short of breath from participating in a physical activity you hadn’t trained for, or from a respiratory virus, you can relate to how distressing it is. However, there is one significant difference between this type of breathlessness and that experienced while living with IPF. In the previous example, people know their breathlessness will subside and breathing will return to normal. Unfortunately, those of us living with IPF cannot take comfort in knowing that our breathlessness will be short-lived, and many of us live in a constant state of fear as a result.
In addition to the mental anguish of having IPF, the physical challenges of this disease are not for the faint of heart. IPF requires pain management, especially toward the end of one’s life, as has been discussed recently in the Pulmonary Fibrosis News Forums. However, describing what that pain feels like to someone who has never lived with a lung disease is difficult.
Recently, in honor of Cystic Fibrosis Awareness Month, I watched an advocacy video in which healthy people were asked to participate in an activity that resembled what breathing was like for those living with cystic fibrosis (CF). While I don’t know what it’s like to have CF, I wondered if people would have a similar reaction to a simulation of breathing with lungs filled with fibrotic tissue.
A few days later, a close friend asked me, “What does it feel like (physically) to have IPF?” Since then, I’ve been thinking of a response. Following are some examples I came up with:
- Burning chest: Have you ever tried to participate in a physical activity you hadn’t trained for, leaving your chest and lungs on fire afterward? Unfortunately, this is a familiar feeling for those of us living with IPF. I assume that this burning sensation is due to the fibrosis in our lung tissue that inhibits adequate oxygenation. Unlike with healthy lungs, this feeling doesn’t go away with rest or medication.
- Upper back pain: This pain can be centralized in one area or widespread across the upper back. It’s typically caused by frequent coughing that makes the surrounding muscles, particularly between the shoulder blades, extremely sore. I’ve heard this described as “rib cramping” because sometimes the pain can extend beyond the back area and travel around to the front of the chest cavity.
- Frequent headaches: Unfortunately, I have regular headaches that are likely due to chronic under-oxygenation. When I put on my supplemental oxygen, I often feel better, but headaches are a common symptom of IPF that I can’t avoid.
- Physical discomfort when lying down: Many of us turn to the comfort of our beds when we need to rest. Unfortunately, for those living with IPF, lying flat can be a considerable source of anxiety due to the inability to inhale deeply in this position. Lying on my back causes a bout of coughing that doesn’t subside until I sit up. This situation isn’t optimal for getting a good night’s sleep. My inability to properly inhale causes me both pain and frustration. Additionally, while lying flat on my back, I feel pressure on my chest.
- Exhaustion: Many people experience fatigue during their lifetime. However, I think IPF-related fatigue is a little different — not worse, but different — because our bodies are forced to rest or we risk our fatigue becoming a crisis. The inability to breathe freely and the constant coughing are physically and mentally exhausting. Our bodies can’t use oxygen as freely as healthy bodies can, which means our organs are deprived of what they need. This forces them to work harder, which leads to further fatigue.
How would you describe living with IPF/PF? 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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.