Idiopathic pulmonary fibrosis (IPF) is a progressive chronic lung condition that affects people both emotionally and physically. The Food and Drug Administration (FDA) held a patient-focused drug development initiative where people living with IPF could talk freely about the effect the disease has on their everyday lives.

Here’s what they said:

Work and Home Life
Many IPF patients talked about how their decreased physical function affected their everyday life. Many were unable to do the simplest of chores without needing to rest afterward. Cleaning the house, walking up stairs, showering and even getting dressed presented problems and led to depression for some patients.

Work and Careers
Patients are often forced to take early retirement due to the shortness of breath and fatigue associated with IPF, which can impact them both emotionally and financially.

MORE: Finding medical care for pulmonary fibrosis

Hobbies
People living with IPF are often forced to give up some of the things they enjoy doing as they no longer have the energy to continue with hobbies outside of the house.

Stigma
IPF patients can often be afraid to go out in public in case they have a coughing fit. Many felt that they were viewed as “contagious” and people wouldn’t come near them. Coughing was cited by many as the most embarrassing part of the disease and they would often try to muffle their coughs.

Relationships
IPF can be a lonely disease with many patients reporting the condition had impacted their relationships with family and friends. Socializing was problematic for many due to the physical restraints of IPF and others complained that they were not able to be active with their grandchildren.

Others were frustrated that because IPF is an invisible disease, people often don’t understand how ill they are.

MORE: Six ways to help you take care of your lungs

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