5 Valuable Reasons Every Caregiver Should Attend Support Group Meetings

How many couples have vowed on their wedding day to care for each other "in sickness and in health?" When a couple is confronted with the struggles of pulmonary hypertension, this commitment can be challenged. Regularly attending support group meetings with your partner is one of the simplest, most practical and rewarding ways to demonstrate your commitment

According to many support group leaders, caregivers have five good reasons to attend support group meetings:

To Offer Support

Stephanie and Tom LayerStephanie and
Tom Layer

Stephanie Layer, a PH patient and Minnesota support group leader, says, “I feel that it is so important for a caregiver to attend support group meetings to show support for the patient. The love and support that caregivers give is the extra strength that helps the patients move forward.”

Living with a chronic illness can often be as much of a mental challenge as it is a physical one. Accompanying a spouse to a support group meeting shows you consider being part of the PH community important. Caregivers who show such understanding and empathy are invaluable.

To Receive Support

Doug TaylorDoug Taylor

“Our approach to pulmonary hypertension is that if one person in the family has PH, then the whole family has it,” explains Doug Taylor, a PH patient and South Carolina support group leader. “Caregivers need to hear what other caregivers see and do and how other caregivers cope.”

As a caregiver, it’s easy to spend all of your time focusing on your loved one while neglecting your own needs, yet PH is life-changing for the caregiver as well as the patient. By attending a support group, you will meet others who are going through the same things you are. You will have the chance to share your PH-related hopes, fears, struggles and victories with fellow caregivers. When your needs are being met, you will feel more energized to be a better friend, a better caregiver, a better spouse.

To Be Educated

Learning more about PH helps caregivers cope. Although living with PH can be an overwhelming experience, a general knowledge of the disease, available treatments and current research can allow both patients and caregivers to embrace hope. A well-informed spouse is better prepared to ask good questions, help evaluate options and assist in making decisions.

To Connect with Other Caregivers

Barbara ThompsonBarbara Thompson

Barbara Thompson, a PH patient and support group leader from Tennessee, says that one of the most important reasons for caregivers to attend support groups is to speak with other caregivers.

PH can be a lonely disease for both patients and caregivers. Many tend to withdraw from social situations for emotional reasons or because of physical limitations. However, socializing is healthy, and a support group is a safe place to interact with people on a similar journey.

To Be Appreciated

Pat MurphyPat Murphy

A PH patient and Florida support group leader, Pat Murphy, claims that “a caregiving-centered meeting brought to light to PH patients that, although we appreciate the care, we don’t always realize the needs of the caregiver.”

Many support group leaders are beginning to understand the importance of caregiver recognition. Heather Kirkland, a PH patient from Idaho, claims that “people are shy about getting personal, but we should be comfortable and happy to honor our caregivers in a significant way.” The acknowledgement of a job well done can encourage caregivers to rededicate themselves to their important roles.

In our culture, it is easy to relinquish support group participation to the sick, but caregivers also benefit greatly. If you are married to a PH patient, think about joining your spouse at a support group meeting to give and receive support, socialize, be appreciated and learn all you can about PH. The experience will allow you to act on your promise to stand together “in sickness and in health.”

This article was first published in Pathlight, Winter 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.