November is COPD Awareness Month.
At 39, Cyndy Ruess went to the hospital after having trouble breathing. Breathing problems were nothing new for Ruess – she had had asthma as a child – and her biggest concern at the time was figuring out when she would be able to work again.
A health care provider (HCP) gave Ruess more serious news. She may not have been able to return to work at all, and her breathing problems were more than just asthma. She suffered from chronic obstructive pulmonary disease (COPD), a condition caused by damage to the lungs or airways. Chronic bronchitis and emphysema are among the most common types of COPD, and people with the disease often experience difficulty breathing, daily coughing with phlegm, and wheezing.
Ruess said she felt guilty and ashamed. She was a smoker and smoking is the most common cause of COPD, although one in four people with COPD have never smoked at all.
“The guilt and self-loathing added a bitter taste to what was already a hard pill to swallow,” Ruess said, noting that at one point her children even told her it was her fault for her condition. “It was a kick in the gut that I wasn’t expecting, but I felt like I deserved it.”
Fear of being judged often prevents patients from seeking treatment that could improve their condition, and many develop psychological problems related to COPD. It is estimated that up to 4 in 10 people with COPD suffer from depression, which creates another barrier to seeking help.
Reduce stigma through education
David Mannino, MD, chief medical officer and co-founder of the COPD Foundation, said reducing stigma while concurrent treatment is an important balance that healthcare providers must strike when treating patients. Like Ruess, people with COPD may feel a sense of stigma surrounding their diagnosis because of the strong association with smoking. Mannino said he has heard patients say that they “caused the disease themselves” or that they “got what they deserved” because of their smoking habits.
“Similar to a diagnosis of lung cancer, one of the first questions people ask is about smoking,” Mannino said. “This is part of the overall ‘shame and blame’ belief that has permeated lung diseases like COPD over the years.”
Mannino said healthcare providers always encourage patients to quit smoking to improve their quality of life and help relieve symptoms. However, they should express that they recognize how difficult this task can be due to the addictive nature of tobacco. He also said providers should emphasize that smoking is not the only cause of COPD and that exposure to lung irritants such as chemicals or other environmental pollutants can damage the lungs.
Outcomes for people with COPD may also depend on socioeconomic factors. People with lower incomes often fare worse, a link that is linked to social determinants that can impact all aspects of health. Poor housing, exposure to pollutants, poor nutrition, barriers to health care, and occupational exposures are among the factors that can increase the risk of COPD or lead to worse outcomes.
“The fight against stigma is an ongoing battle,” Mannino said. He pointed out that in addition to the fact that many people with COPD have never smoked, COPD can also develop and progress after people stop smoking. “We just have to constantly remind people of these things.”
Read: Freedom to Breathe: Inequalities and COPD >>
You must stop smoking for at least six months before a lung transplant. Smoking is prohibited during oxygen therapy. However, patients who currently smoke continue to receive standard COPD therapies. Health care providers can also help reduce stigma by inviting patients to participate in shared decision-making, encouraging participation in clinical trials, and offering new treatments to those who may still smoke.
Overcoming the stigma of COPD
Patients can also play a role in combating stigma. Support groups for people with COPD and therapy can help patients improve their mental health and feel empowered to seek help and better care from healthcare professionals.
For Ruess, the fight against stigma has been a journey of almost two decades. Ruess, now 57, has found her voice through advocacy and joined the COPD Foundation’s State Captain program. As a state captain for California, she has participated in health fairs to raise awareness of COPD, advocated for patient education about COPD, and been involved in research opportunities to improve treatments. Ruess also hopes to work with elected officials to improve COPD policy and values the opportunity to help other people receive the best care possible – regardless of the reason for their diagnosis.
This educational resource was created with support from Sanofi, a member of the HealthyWomen Corporate Advisory Council.
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