Think back to the last bad head or chest cold you had. You probably felt like you couldn’t take a deep breath. You might have experienced short bursts of a dry, hacking cough, especially in drier places. No amount of sleep made you feel truly rested and any amount of activity made you feel weak.
For people diagnosed with pulmonary fibrosis, this is what daily life can feel like 24/7/365. Patients with this lung disease tend to report chronic discomfort—think: difficulty breathing, muscle weakness and aching joints—rather than pain.
But these are only the physiological symptoms of the disease, the ones you can find listed on a generic disease fact sheet. The experience of living with it is entirely personal and deeply visceral. What is it really like to live with pulmonary fibrosis? Here’s what real PF patients have to say.
“It felt like I broke my ribs.”
For pulmonary fibrosis patients, pain often comes as a side effect of a severe cough that won’t let up. One patient said, “My cough was really so deep that it felt like I broke my ribs, and my ribs became so cramped that I couldn’t even twist [my body].” Some report physical exhaustion after an attack, others being covered in sweat. Some coughs are violent and productive, bringing up a viscous, white phlegm.
“My reaction was, ‘Not something else!’”
Pulmonary fibrosis is often diagnosed in people with other chronic conditions. One patient sought the help of a mental health counselor to help them through the initial diagnosis, which came on top of diabetes, arthritis, tinnitus and polymyalgia.
“They don’t understand it.”
For PF patients who look mostly well, a lack of public knowledge about interstitial lung disease is frustrating. “When people see you coughing, they say, ‘Take cough medicine, take this, take that.’ They don’t understand it.” Why? “Because it’s invisible,” the patient explains. “I don’t think they believe there is anything wrong with you, in a way. Quite often, then they would say, ‘why are you panting when you are doing nothing?’”
“You’re not free.”
When you can’t take a full, deep breath anymore, you realize just how much that simple act impacts everything else you do, right down to expressing your emotions. ‘‘You’re not free, can’t laugh or cry fully because if you do, you won’t be able to breathe even with oxygen,” said a patient.
“I have to carry Valium all the time now.”
One patient recounted a story about running out of oxygen while at the grocery store. “I was really gagging for breath,” they describe. “That’s when the panic attack starts setting in and, you know, they’re terrible.”
Panic is a common experience for those with severe shortness of breath. A different individual shared, “When it was the worst panic of the moment…I suddenly knew what it was like to drown.”
“I wanted to be untethered more than anything.”
Oxygen therapy is a fact of life for lots of people living with pulmonary fibrosis. Still, a portable oxygen tank can be a nuisance that limits many patients’ ability to move through life normally. “To be attached to that machine or to a tank is not a pleasant experience,” said one person. Another equated needing oxygen to “being in jail.”
“Here I am, 7 years later.”
Many patients are given their IPF diagnoses very abruptly and often doctors who aren’t very familiar with the disease and possible treatments and therapies present it like a death sentence.
One patient said they were given the news over the phone. “It was almost like there was already a coffin next to me,” they remember.
Another who was in a clinical trial for a new medication was devastated when they were first diagnosed. “I thought, ‘Oh my life is over with,’” they shared. And yet, “Here I am, 7 years later.”
“That first breath was remarkable.”
An IPF patient who received a lung transplant after eight days on the waiting list was amazed when they woke up after surgery. “I did not realize how sick I was until I took a breath with those new lungs,” they said. “It was very different to be able to inhale that much. I had been so restricted for so long and did not realize it.”
When it comes to idiopathic pulmonary fibrosis, there’s no one journey that’s universal–and no one treatment plan, either. The more doctors and researchers treat and study IPF, the more they come to realize that a whole-body approach to treatment is the order of the day. And, depending on the symptoms you experience as a pulmonary fibrosis patient, that could mean a variety of different things from supplemental oxygen to breathing exercises to mental health care.
Every aspect of your health is important, not just what’s going on in your lungs. As you work with your medical treatment team, emphasize your desire for care that takes all of your symptoms–like the ones mentioned here–into consideration, rather than solely the respiratory ones.