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.
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.
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.
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