Finding Your COPD Community

5 min read

Valerie Chang was first diagnosed with chronic obstructive pulmonary disorder (COPD) in December 2000. Although she finally knew the name of the lung disease that caused her to wake up gasping for breath on many nights, she couldn’t find much information on how to treat or live with it.

“I saw a specialist who blamed me for the extensive lung damage I had, for not seeking help and getting diagnosed sooner,” says Chang, who lives in Honolulu. She was in her early 40s, working part time as an attorney, and had two young children, and had never smoked or been exposed to air pollutants, two common causes of COPD. “I was so upset. I couldn’t drive home for an hour after that. It was crushing.”

Doctors only prescribed steroids that didn’t improve her breathing and told Chang that she may ultimately need a lung transplant to survive. She had to travel to Denver to see a pulmonologist at a major respiratory hospital to get effective treatment, but she wanted to stay informed about COPD research and find support too.

“It was very stressful. I went to the medical library and read everything I could find. It was very depressing,” she says. Online, she discovered the Emphysema Foundation Fighting for Our Right to Survive (EFFORTS), COPD Alert, and the COPD Foundation, where she connected with other people with COPD who shared tips and personal experiences. She volunteered as a patient advocate and formed a nonprofit, the Hawaii COPD Coalition, which holds support groups.

“It’s terribly isolating to be diagnosed with COPD, especially when you are young. Everyone around you is healthy, so you want to be around role models who are doing well and thriving in their lives. You can’t change your past. But you change your present and future.”

When you’re first diagnosed with COPD, seek support from the people around you if you can, says Albert Rizzo, MD, FACP, chief medical officer of the American Lung Association and a pulmonologist at Christiana Care in Newark, DE.

“Your immediate support can come from family or friends, especially someone who may be able to come with you to doctor’s appointments, help you coordinate your care, and just listen,” he says. The American Lung Association’s Better Breathers Club and the COPD Foundation’s COPD360Social are just a few online support groups where people share tips, but also involve doctors and respiratory therapists to make sure any health information is accurate.

Pulmonary rehabilitation groups led by a respiratory therapist are another place to find your COPD community, and they’re mostly online due to COVID-19, Rizzo says.

“What you’ll hear at these group sessions is that it’s important to keep a positive attitude and share your experiences. People with chronic lung disease will have periods when they’re depressed. That’s common. Sometimes, just talking through how you were diagnosed, what you have experienced, is very helpful.”

Karen Deitemeyer was diagnosed with COPD in 2001 after struggling with breathing symptoms for 10 years. She volunteers with the COPD Foundation, where she met Chang.

“When I was diagnosed, there was very little information anywhere. I had never even heard the term COPD,” says Deitemeyer, who’s retired and lives in Melbourne, FL. She found an online listserv for EFFORTS, signed up, met others with COPD, and enjoyed sharing tips on how to manage breathing symptoms and stay active.

“You realize that you’re not alone. COPD is a very frightening diagnosis. There’s a lot of misinformation on the web. Being part of a support group that is not only made up of patients, but also includes medical professionals, is valuable,” she says.

Patricia Owens of Tucson, AZ, also found support through the COPD Foundation’s 360social and MyCOPDTeam, another online group. She has several family members and neighbors with COPD and sends them links to support group sites and information. She also connects with her COPD patient community on Facebook.

Owens volunteers as her state captain for the COPD Foundation and says, “I love it! I have learned so much through their Q&A sessions and webinars on different topics, and from all the people that belong to our groups. I have made some really good friends. It’s important that people know they are not alone with this dreaded disease. We can relate to each other.”

For people with COPD, who may already be more likely to experience anxiety and depression, COVID-19 made it even harder to cope, says Frank Sciurba, MD, director of the Emphysema/COPD Research Center at the University of Pittsburgh Medical Center.

“The isolation associated with the COVID lockdown worsens anxiety for people with COPD. They are worried about getting it, getting sick, or dying. Their isolation also facilitates physical deconditioning and can worsen their symptoms,” Sciurba says.

Now that COPD support groups have moved online through apps like Zoom or Facebook Live, Sciurba urges his patients to touch base with others online and attend pulmonary rehab groups. “It doesn’t make your symptoms better, but it teaches you how to live with your lung disease better, and almost always makes you feel and function better.”

With COVID’s physical distancing, people with COPD need to stay connected and support each other online, Deitemeyer says.

“Support groups help you cope with living with COPD. If you’re a little down, that’s very common. In an online support group, someone may be able to give you some tips or ideas that really help. You’re not alone.”

Chang’s group meets twice monthly via Zoom and often attracts people from other states, as well as doctors or pulmonary therapists. Information is empowering for people with COPD, she says.

People can talk about what treatments work or don’t work. Sometimes, even doctors aren’t aware of everything, she says. “Sometimes, patients can reach others with life-saving information. Someone may say, ‘You’re killing yourself if you don’t use oxygen.’ Patients can also talk about their successes and what they do to exercise safely. Many are discouraged at how breathless they are when they exercise. You meet others and learn that the more you do, the more you CAN do.”