Living with heart failure means you have to make a lot of decisions every day to protect your heart and boost your energy, from watching your weight to limiting fluids. Despite their best efforts, your friends and family can’t really understand how all these changes affect your life.
That’s where a support group may come in. These groups can have many benefits, including offering practical advice from others living with the condition, such as how to cut back on salt without losing taste, says Elizabeth Lockhart, PhD, MPH, who has conducted research about heart failure support groups.
People in support groups also report that they’re inspired by seeing what others with the condition can accomplish, she says.
These communities prove “that you can still do things on a day-to-day basis -- that you don’t need to be babied,” Lockhart says. “You can really challenge yourself to do the stuff that you want to. That some days may not be as good as others. You just have to weigh where you are on that day.”
More than 6 million U.S. adults live with heart failure. They can take advantage of many heart-related support groups, whether in-person or online. For example, the American Heart Association (AHA) hosts an online support network for people with heart failure. The nonprofit organization Mended Hearts has chapters across the country for adults and children with heart conditions. And many other supportive gatherings are organized through hospitals, community organizations, and social media.
Getting to know others with heart failure may ease the mental strain that some people can have after they’re diagnosed, says Carolyn Thomas, a patient advocate and author of A Woman’s Guide to Living with Heart Disease. One out of every 5 people with heart failure also has depression, according to an analysis of three dozen studies published in the Journal of the American College of Cardiology.
It doesn’t help that the diagnosis “heart failure” sounds so scary, says Thomas, who has criticized the name on her Heart Sisters blog. “Somebody has said to them out loud, 'Your heart is failing.’
“We all know what the word 'failing’ means. It means that something is terribly wrong. But with heart failure, it’s that the pump isn’t working as well as it should. That’s all that it means.”
Finding the Right Fit
Seeking support can help not just people with the condition but also their caregivers, says Gregg Fonarow, MD, who directs the Ahmanson-UCLA Cardiomyopathy Center in Los Angeles. “We often can see where, in response to the stress and challenges, individuals at times either stop medications or do not refill them or do not closely follow up on their condition when things worsen,” he says. By getting to know others, they won’t feel so alone in managing the heart condition, which can pay off for their health.
When searching for an in-person group, Lockhart suggests finding out how many members are involved. If the group includes just a few people, you may not find someone who you connect with on a personal level. Closer to 10 participants may keep the conversation going, especially if they’re at a similar stage of heart failure and thus share some struggles, she says.
For some, an online community may prove to be a better fit, Thomas says. If your energy has been flagging all day, an online group lets you take part without leaving your home, she says. She participates in the online WomenHeart group, which has nearly 50,000 members.
Thomas recommends looking for an online group that includes a moderator who can step in if someone promotes incorrect information or a miracle cure. But there’s some evidence that these groups can correct themselves, Thomas says. She points to one study involving a breast cancer support group, which found that just 10 out of 4,600 postings were false or misleading. Of those 10, seven were corrected by other participants within hours.
Watching Out for Pitfalls
How you interact with a group may change over time, Thomas says.
Shortly after her own major heart attack more than a decade ago, she lurked a lot in online support communities, soaking up all the information she could. But after she’d learned more, she stopped seeking out information as much, instead sharing what she knew as others joined.
Over time, she says, you may find that you don’t log on as frequently.
“Now, you’re just living your life. You may come back if you have some unusual symptoms,” Thomas says.
She also advises vetting the group a bit. Check out the sponsor, since some groups are launched by pharmaceutical companies. “You’re getting information that pharmaceutical companies want you to get.”
Also, find out whether the sponsor will keep your information private, Thomas adds. Are they compiling and selling it for marketing or other purposes?
Be careful about how much you share, particularly in an online group where you can’t see the others involved, Thomas says. “There’s no social cues that you pick up. There’s this perceived intimacy, like, 'I know these people,’ even though you don’t.’”
For people with heart failure, nothing beats seeing up close how healthier choices can improve their lives, Lockhart says. “Our [support group] participants used their peers to judge where they were both in a positive and in a motivational way,” she says. “Maybe I am doing better than my peer and I want to continue to do better than my peer.” Or a participant may notice how well some others have reduced their fatigue and other symptoms and decide to boost their efforts.
“A doctor can tell you everything that you can do right,” Lockhart says. “But when you see that example or you see how well that you are doing, both of those things can be motivating.”