Your Prescription for Well-Being: Attend a Support Group

By Sophie Klein
PHA Volunteer Services Associate

Support groups offer attendees so many benefits, both physically and emotionally. According to the Mayo Clinic, patients experience a number of health benefits when they attend support groups, including reduced distress, depression and anxiety as well as improved skills for coping and a greater sense of control over their own health. How do support groups do this? Read on to find out!

Finding Medical Answers

It’s not unusual to have a lot of questions regarding your PH diagnosis and your treatment. Is nausea a normal side effect? Is it all right for me to take allergy medication? Sometimes you won’t remember all the questions that you have or even have time to bring them up during your appointments with your PH specialist. Your PH support group may offer another outlet to discuss health-related questions.

Support groups often feature pulmonologists, cardiologists, nurses or respiratory therapists as speakers. And the majority of the time the speaker saves time for patient questions. If you have a pressing question, don’t be afraid to ask, take notes and bring back what you learned to your next medical appointment.

Medical professionals are an invaluable part of support group education. Not only do they provide education and support, leaders often find that more people attend their meetings when a doctor is speaking. Cindy Green, support group leader of the Piedmont, N.C., Support Group, says, “We are an older group of PHers and we’re trying to make our presence known. We have as many as 30 members when I can get a doctor to speak.” Cindy explains that some of the new members who have joined the group first came to learn more about the disease, but have since grown close to others and return often.

Gaining Strength through Purpose

Even when your support group meeting does not feature a medical speaker, it still has the potential to positively affect your health. Support groups can provide a sense of purpose and control over your disease. Some support groups even hold special meetings focused on these ideas. Every year Charlotte McCabe, support group leader in Puyallup, Wash., plans a meeting about “Being Your Own Advocate” where she speaks about what pulmonary hypertension patients can do to get the most out of their medical appointments. Patients who arrive at appointments well-prepared, with a list of questions and notes on any health changes, will be able to get the most out of their time with a PH specialist.

Healing through Sharing

Hearing stories of others’ experiences with the disease can help you troubleshoot day-to-day issues regarding your own situation. Hearing what others have to say about their experience can also put you at ease about difficult parts of living with PH. Mary Svikhart, a support group leader for the Hershey and Harrisburg, Pa., Support Group, found her first rightheart catheterization very distressing. Leading up to her second catheterization, she asked other patients about their experiences. Mary was surprised with the how calmly they reflected on the same procedure. In the end, the second catheterization was much easier. “They were right,” she recounts. “That’s the kind of cath I was supposed to have.” Feedback from other PH patients can change your outlook and help make you more willing to go forward with your treatment.

Support groups also provide health benefits by by allowing everyone to share achievements with each other. The St. Louis, Mo., Support Group celebrated the end of 2011 by making a list of some of the health successes members of the group had over the course of the year, from an improved six-minute walk to a successful lung transplant. The benefits of witnessing the triumphs of others cannot be downplayed. At diagnosis, no one really knows what's in store for them and getting to know others with pulmonary hypertension may help. For the newly diagnosed patient, seeing someone who has lived with the disease for many years or getting to know someone who no longer needs to use oxygen can entirely change that person's expectations of the coming years. These are just a few of the many good reasons why support groups are good for your wellbeing.

What benefits do support groups bring to your wellbeing? Let us know! Email SupportGroups@PHAssociation.org.

This article was first published in Pathlight Spring 2012.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.