“You did it to yourself.” This is one of the things that patients who are diagnosed with COPD often hear because of the stigma the disease currently carries. Whether because of socioeconomic status or tobacco dependence, many patients struggle to manage the emotional effects of a diagnosis that they believe is their fault. This could make them feel embarrassed to lean on their loved ones for help or support. “It is heartbreaking to hear,” says Karen, a respiratory therapist and Better Breathers Club facilitator who encounters these stories daily. “Many people say things like, ‘if I just didn’t do this to myself,’ or, ‘if I had known better, I wouldn’t have smoked and this wouldn’t have happened.’”
Chronic obstructive pulmonary disease (COPD) is a chronic lung condition that affects more than 16 million people in the U.S. Over the last 200 years, our understanding of COPD, including chronic bronchitis and emphysema, has evolved. We know more about how risk factors for COPD including cigarette smoking, indoor and outdoor air pollution, family history of COPD and secondhand smoke exposures can lead to damage in the lungs. Because tobacco use is a leading cause of COPD, many patients express feeling ashamed when they receive a COPD diagnosis, which can affect their treatment, mental health and overall wellbeing.
In truth, anyone can develop COPD and nobody deserves it, regardless of their smoking history. There are many causes beyond having a history of tobacco use, and stigma can cause people to put off getting diagnosed and treated. “Unfortunately, even in the medical field where they teach compassion and empathy, there are a handful of providers who are frank and will blame someone for their condition without thinking about it,” Karen explained. “This happens with lung cancer as well, and it’s embarrassing because it shows a lack of understanding, and one bad experience can prevent people from seeking the help they need in the future.”
The Hidden Start to a New Way of Life
When people with COPD first begin to experience symptoms, like difficulty breathing or chronic coughing, it is very common for them to try to hide them. This can cause isolation from friends and family, who do not understand why their loved one no longer wants to go out or participate in things, for fear of revealing their deteriorating health. “Many patients are embarrassed or don’t want to be a burden. Instead of explaining they are having a bad day they just say they are going to stay in.”
Just as concerning, patients may not understand what is happening and so they delay seeking treatment. “With COPD you have good days and bad days and if you are not yet diagnosed you may not understand why you are energetic one day and the next you can’t get out of bed or walk to the bathroom without being short of breath,” said Karen. Just like any other illness, many people write off their problems on days they are feeling good, and as a result, their symptoms get progressively worse and harder to treat. With COPD, this may land patients in the emergency room because they have an exacerbation or flare up.
“I often hear people say, ‘but I was fine yesterday so it can’t be something serious.’ But your body is great at trying to fight illness and balance out. That is until it can’t anymore and you end up in the hospital,” Karen continued.
Learning and Listening to Break Down Barriers
Karen has seen firsthand the importance of actively listening to patients to help them through the struggles of living with COPD. It starts at that very first meeting, when your healthcare provider takes a detailed history and performs pulmonary function testing. Being open and honest is the best way to get proper treatment and diagnosis, and your healthcare provider should be safe and supportive. Karen also stressed the importance of educating and empowering patients, so they will advocate for themselves and know they are not alone. “I try to let them know that it is not a shameful thing. It is no different than any other chronic disease, like diabetes or cancer. COPD is a part of them, and they can still live a full, beautiful life. They just need to adjust and learn how to do it in a different way,” she said.
Sharing stories and experiences with others can help break down the stigma and let patients know they are not alone. The Better Breathers Club meetings are where Karen and other experts work with those diagnosed with COPD to overcome and work through any feeling they may be having. “We are here for emotional support. So, we want them to acknowledge any problems they are having and if they become emotional, we take them aside and let them give us the whole story,” she said. She has found that just the ability to tell their stories without judgement and having people around who understand what they are going through is a very powerful tool for most patients with COPD.
A Better Breather Club is also a place where patients find ways to talk with their family members about what is going on with them, physically and emotionally. This starts with educating family members and caregivers so that they can help whenever the patient is having a bad day. “It’s important to understand your loved one’s symptoms and learn to be flexible because they will have good and bad days. They will also sometimes hide their symptoms, so you need to know when to dig a little deeper or let it go.”
Once you build that trust, however, caregivers can be a great asset for people with COPD. “Having someone to support you, a family member or friend who you can trust to be there, listen and ask questions so that you don’t miss anything is crucial,” Karen explained.
With help from resources like the Better Breathers Club, patients with COPD and their loved ones can plan for events or bad days. Karen suggests having a checklist of meds and other essentials as well as a go-bag on hand with a phone charger and your favorite things in case a visit to your doctor turns into an overnight stay in the hospital. “Life is just a surprise sometimes and you can’t prepare for everything but as a patient with lung disease there are small things you can do to prepare yourself and make your day a bit easier.”
She also believes knowledge is power and the key to breaking down harmful stigmas that keep people with COPD feeling out of the loop. “Knowledge makes you stronger. If you know the facts and can talk about your diagnosis, no one can get you down.”
Blog last updated: March 24, 2026
