“I’m a rah-rah person,” says Pat Barclift, 71, of West Tennessee. As a fitness team leader for the online COPD-Support community, she spurs members on. “Just get out there and do what you can,” she tells them. “If all you can do is just touch your toes once — then, by golly, you did that with finesse.”
But that optimistic spirit failed Barclift when she first learned she had chronic obstructive pulmonary disease — a serious, progressive lung condition — in June 2012. For the first 24 hours, she recalls being “in shock.” She didn’t tell anybody she had COPD, not even her husband in the waiting room. “I had just talked to the doctor and looked at the X-ray, but I simply could not process it all,” she says. “A day later, I came to my senses. And it hit me hard.”
Emotional Fallout
Anxiety, depression and loneliness are major psychological issues affecting COPD patients, often after a “sudden and frightening diagnosis,” says Vlady Rozenbaum, founder of COPD-Alert.
He talks about “cultural” issues — not wanting to be viewed as sick or vulnerable — even as patients struggle to cope with breathing problems and control flare-ups. “So you don’t even want to invite people to your home because you don’t want them to see you in a situation like that,” he explains. People with COPD must deal with sharply reduced activity tolerance, adapting their home and work routines and even having to change how they eat.
“You don’t know if you can really go out and socialize,” Rozenbaum says. “When you suddenly become short of breath and you may not have enough oxygen — or fear you may not have enough — what are you going to do?” Going out in public with oxygen can pose a psychological hurdle. Unfortunately, some COPD patients who rely on oxygen choose to stay home instead, avoiding the stares of strangers at the cost of social isolation.
Family Matters
For people with COPD, Rozenbaum says, “an understanding family and friends are at a premium.”
As Barclift started to share her news, she found some people knew exactly the right thing to say during this emotionally fragile time — but others, not so much. “When you get a serious diagnosis like this, you want to think long and hard about who you are going to break the news to,” she says. “That person’s reaction is going to set the tone for you for a long time. If he accepts and loves you in spite of it, you’re on your way. You can handle it.”
Relatives and neighbors can help in many ways, Rozenbaum says. “If you go somewhere, encourage people to join you,” he says. By arranging outings — to movie theaters, concerts or just going for a walk — you can help people combat isolation and stay connected. Learning more about COPD will help you understand what your friend or loved one is going through. Ask questions, he suggests. Engage people with COPD through conversation.
His support group, COPD-Alert, promotes exchange of information on drug treatments and oxygen equipment, Medicare and insurance issues, findings from medical meetings, mutual encouragement and a chance to consult with experts.
Informed Public?
Although public awareness could be much better, some people know just enough about COPD to tie it to smoking.
In Rozenbaum’s case, though, smoking wasn’t a factor. His disease is due to a genetic condition called alpha-1 antitrypsin deficiency. For others, on-the-job chemical exposures contribute to their risk of developing COPD. Even so, “there’s a stigma that if you have emphysema or COPD, you must have been smoking,” he says. And that leads to fear of being judged.
Barclift recalls going to a gym soon after her diagnosis and striking up a conversation with a fellow exerciser. His attitude changed when Barclift revealed she had COPD. “Oh, you’re one of those,” she recalls him saying. He interrupted the ensuing conversation with obnoxious bouts of fake coughing. At the time, Barclift was too stunned to react. Now, she says, if something like that happened to somebody she knew, she would tell them, “Walk away. And if you’re on your scooter, scoot away.”
Support Groups: a Safe Place
Last November, the COPD Foundation launched COPD360social to provide an environment where people with COPD, family members and caregivers can interact. “People comment that they felt so isolated, so alone — and the community has helped give them a little more hope and a little bit more means to communicate with other folks,” says Vincent Malanga, chief information officer.
One recent conversation stands out for Malanga. A woman whose mother was just diagnosed with COPD shared her distress over the term “end-stage COPD” used by her doctors. That provoked a lively discussion, with virtual community members chiming in with comments like, “Yeah, I was diagnosed with end-stage COPD — 14 years ago.”
For people with COPD and other lung conditions, pulmonary rehabilitation programs can help them increase their ability to function and exercise, manage their symptoms and maintain better quality of life. Programs also provide an opportunity to bond with others dealing with challenging medical issues. And many offer counseling.
Offline Support
While the COPD population is getting younger, Rozenbaum says, some people may lack access to computers or do not feel comfortable going online. He suggests seeking out physical meetings via newspapers or bulletin board notices in grocery stores and hospitals.
The American Lung Association offers in-person support groups through its Better Breathers clubs. For more information, call 800-LUNG-USA (800-586-4872). People can also call the COPD Foundation’s information line at 866-316-COPD (866-316-2673) for live conversation.
Self-Conscious No More
Barclift, who says she feels “blessed” to be in a mild stage of COPD, has come to terms with her diagnosis. “Once I get in a wheelchair, once I get on oxygen — I don’t know,” she adds. “But I do know this for sure: I want to get over my social inhibitions.” Cheering on others who have COPD and doing her bit to educate the public seem like good starting points, she says.
For more than a decade, Rozenbaum has traveled with oxygen in the United States, Europe and the Middle East. He’s happy to talk to people who approach him on planes and in airports asking about his oxygen machine, often out of concern for loved ones at home.
There was a time, Rozenbaum says, when he was self-conscious about going out because he didn’t want people to realize he was on oxygen. “But then,” he says, “I noticed that nobody really cares.”
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