Image for Better Breathers Clubs: Help for Adults with Lung Disease
By Guest Blogger – Cheryl Sasse, Director, Lung Health with American Lung Association of Minnesota
Living with a chronic respiratory disease can be difficult. Feeling short of breath is distressing to anyone; but for people with lung disease the uncertainty about the future or what changes may be in store can be overwhelming. They may feel guilt, anger, panic and/or anxiety. Their activities of daily living can become more difficult to manage. Some have difficulty sleeping. CPAP masks and other oxygen equipment helps with overall health in some instances but can be uncomfortable until the wearer gets used to it. They likely have questions that need answering, activities that need adapting, and a variety of emotional needs to deal with.
Pulmonary rehabilitation programs are invaluable in supplying a base of information about chronic lung disease. These programs are available through many local hospitals in Minnesota. Better Breathers Clubs (BBCs) offered by the American Lung Association of Minnesota and their local partners, take things a step further by offering continued emotional support and ongoing opportunities to learn what is new and to review the important stuff about how to “live” with lung disease. Currently, there are several active clubs in and around the Minneapolis/St. Paul metro area, as well as throughout the state of Minnesota. If there is not a Better Breathers Club near you, we can help you start one!
While family members and close friends often provide the emotional support needed, that is not always the case. Sometimes even the most well-meaning friends may distance themselves because they don’t know what to say or do. They may worry about imposing, so rather than saying or doing the wrong thing, they do nothing. This may isolate people with lung disease at the time they need support the most. Or, people with lung disease may be leery of expressing their feelings because they feel their family and friends are already dealing with financial concerns, increased household responsibilities, and concerns about their health. They may not want to burden their loved ones with anything else.
Often people with chronic lung disease need the comfort and security offered within a support group to share their daily joys and concerns. Meeting within a safe and confidential environment alongside a group of their peers can provide a place to vent some of their feelings without experiencing guilt about burdening a family member or friend. It is also beneficial to family members to attend these group sessions. Getting involved with others living with the same challenges can be very reassuring and rewarding. To know that the person next to them has actually had a similar experience and then to hear how they manage is powerful. People used to think that talking about their feelings or asking for help were signs of weakness. Some feared that being with others who suffered from chronic illness would make them depressed. On the contrary, support groups can have just the opposite effect. Support groups have shown to increase quality of life, self-confidence and coping ability.
Minnesota Better Breathers Club support group sessions are held each month in a variety of locations. During these sessions, information is shared, jokes are told, and friends are made. I recently asked some of my regular attendees what they got out of the Better Breathers Club and why they return month after month. Here are some of their responses:
- I’ve learned a lot and like the “can-do” attitude of group members.
- I am glad to share things I’ve learned to help others in the same situation.
- We’re working together to make life better.
- I like learning how others handle lung issues and am always looking for information on new medications, oxygen systems or anything related to my lung disease. This groups helps identify resources, like equipment and companies, that are helpful to me.
- I like to stay active so this group helps me learn about new oxygen options.
- As a caregiver, I listen and then know what to do if something happens at home.
- I like the social aspect of attending and appreciate getting unfiltered ideas from other attendees! I hear information I can use.
- Going to the group keeps us doing and moving, great for mental attitude.
- We’re a FUN group!
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