Chronic diseases are long-lasting conditions that can’t be cured but usually can be controlled. A chronic lung disease prevents the lungs and respiratory system from working correctly. When you have a chronic lung disease, you are often faced with making complex health decisions. You will need to work closely with your healthcare team to determine the correct treatment plan for your specific needs and see your healthcare provider for regularly scheduled visits to monitor your condition. This may result in additional visits to your healthcare provider, getting a variety of tests or even seeing specialists. Sometimes, everyday tasks may come with challenges. Having the support of others is a crucial component to managing your chronic condition and having improved health outcomes.
How Support Groups Work
No person should have to face a chronic disease alone. Though family and friends can play a critical role in disease management, there are numerous benefits to being part of a larger support community. One of the biggest benefits is that supportive communities provide a space for acceptance and the ability to share a connection with others living a similar path. This decreases social isolation which can often be a part of living with chronic health conditions. As one member of a support group shared, “When I am with the group, they understand what I am going through because it has happened to them too,” said one Better Breathers Club member.
"People facing lung disease can often feel isolated," said Deb Brown, American Lung Association’s Chief Mission Officer “The support communities on Inspire or through our Caregiver network provide much needed comradery and peer-to-peer guidance.” Research supports this claim, with studies showing that people who have social support are more likely to make healthier choices and have better health outcomes, such as reduced anxiety or depression.
Unfortunately, some people may feel intimidated reaching out to a support network. You may be worried about fitting in or be unsure about what to expect. While it is perfectly normal to feel hesitant at first, it is important to remember that support groups are safe spaces where you can share your experiences with others and get information that is practical and helpful to you. “I didn’t share until I had been to meetings several times,” said one Pulmonary Hypertension community member, “but when I finally did, I felt so supported. It felt like coming home.”
Additionally, living with a chronic lung disease can be tiring, both physically and emotionally, so attending a meeting may not seem like a welcome addition to your already full list of things to do. Luckily, local support groups are often not only offered in-person, but online, making them more convenient.
A Learning Opportunity
Besides providing people to talk to, support groups are also a great place to learn more about your condition. Sharing knowledge arms individuals living with a chronic disease and their caregivers with the tools to better maneuver through their health journey. Participants of support networks have the opportunity to share practical information and resources that others may benefit from.
Certain groups may offer additional educational opportunities with healthcare providers. They may be able to provide resources for improving your quality of life. "While our group feels like a little family, I'm also learning more about this crazy disease that I've been living with for over 10 years," Debbie D., a member of the Chicago Better Breathers Club, said. "I'm able to ask one-on-one questions with doctors and respiratory therapists, and when we talk about COPD or severe asthma—just because it doesn't affect me personally, doesn't mean I can't learn something from that."
The ability to share your experience with a group is empowering. It gives you a voice, can be healing and can foster connections. Your story may be inspiring and encouraging for others. "My Better Breathers Club is the one place where I can just be Debbie—not 'Debbie with sarcoidosis,” she continued.
As you go through your lung health journey living with a chronic lung disease, the power of support networks should not be underestimated. They are an important part of disease management that provide opportunities for education, empowerment, and sharing your journey with others, which can lessen the load you may sometimes feel.
Learn more at Lung.org or call the Lung HelpLine at 1-800-LUNGUSA.
Blog last updated: October 16, 2024
