Support Groups Provide Strength

Debbie Drell, Senior Director of Volunteer Services, Pulmonary Hypertension Association, knows firsthand that there’s strength in numbers. Here she offers insight about the emotional and educational benefits of support groups.

It was a cloudy, dark day in the small town of Cuero, Texas, when my sister, Alex, took out the trash and experienced her fourth grand mal seizure. The proverbial “straw that broke the camel’s back” was this simple household task that her body just couldn’t manage. After a dozen misdiagnoses, the events on this day in September 1998 would finally lead doctors to determine that she had pulmonary hypertension (PH) — a rare, life-threatening disease that is difficult to diagnose.

It must have been so difficult for Alex, during the early days, to figure out a new way of caring for her three young daughters with a weakened heart, struggling lungs and dramatically reduced energy. On top of it all, her husband didn’t understand and couldn’t handle the shift of responsibilities, hospitalizations, insurance battles, and disability applications. Things got worse before they got better.

I’ll never forget the first time Alex met another person diagnosed with PH. Living in a town with a population of 4,000, it was nothing short of a miracle that she met someone else living with this “one in a million” rare disease. This other person with PH was a young woman living with PH associated with lupus. It was an amazing moment that would change our lives forever. We were not alone.

In the late 1980s, a woman diagnosed with PH spent three years writing letters to the National Organization of Rare Diseases before finally connecting with another patient. Little did she know that this first meeting of three patients and a patient’s nurse sister, around a kitchen table in Florida in 1991, would not only be the first support group for PH patients, but would lead to the formation of the Pulmonary Hypertension Association (PHA). This association has evolved into a community of more than 16,000 PH patients, caregivers, family members and medical professionals. PHA’s mission is to find ways to prevent and cure PH and to provide hope to the community through support, education, research, advocacy and awareness.

We’ve come a long way since those difficult, early days: from zero to 12 PH therapies, from one group to 245 support groups nationwide, from three years of letter writing to now instant online connections through social media and websites.

I’ve seen this growth firsthand. I’ve been working at PHA for 11 years and my sister has been living with this disease for 17 years. My job is to coordinate the work of hundreds of volunteers leading the 245 support groups that meet nearly 800 times a year.

Today, tons of information is available online; however, anyone who was diagnosed with PH has likely Googled the words and found scary, confusing and outdated information (unless, of course, they find themselves on our website). Even though there is a growing field of research and understanding of the disease, there is still much confusion about pulmonary hypertension:

• What do my “numbers” mean when I get evaluated? What if I never had a right heart catheterization?
• Does it matter if I was diagnosed and get care from a pulmonologist, cardiologist, or rheumatologist?
• Should I know the World Health Organization (WHO) group classification for my disease? What is this?

An individual diagnosed with PH has so much to learn, and that’s where a support group can be a vital resource. Connecting with another patient can give hope, and support groups often provide medical information in the form of doctor or nurse presenters during meetings.

There are numerous reasons to attend a support group meeting. Over the years, I’ve heard valid reasons why people can’t make it to support groups. But here are some reasons that I must simply challenge:

“I am doing fine and don’t need to vent.”
Obviously, support groups provide a safe space for venting – but that’s not all they do, and venting doesn’t necessarily happen at every meeting. Many support groups share stories, victories, laughter and tips for better living. Many support groups provide education in the form of medical talks by leading doctors, nurses and other allied healthcare professionals. Some groups bring yoga instructors, dietitians, and laughter therapists to reduce stress and improve coping skills.

“I don’t want to see people sicker than me.”
There might be people who are sicker than you, but PH is very complex and everyone is different. One person may be on oxygen today, and in a year, with therapies, improve. Maybe the people who are sicker than you need to see you and know that they have hope for better living down the road.

“I have enough support with my family and friends.”
That’s wonderful! Have you considered that maybe your family would love to learn and meet other family members caring for their loved one with PH? Try coming to a meeting for yourself and see if you can learn from other patients, too.

“I’m shy and don’t really want to talk.”
At support group meetings, patients share their journeys — both good and bad. Not only can this help someone come to terms with their own diagnosis, but it can also act as a cathartic release. However, just because one person shares their journey, it doesn’t mean that you have to as well. Sometimes it can take a meeting or two (or more) to feel comfortable sharing. Your journey is your own, and sharing at support group meetings is just one of the ways you can connect with other support group members, but it’s not mandatory.

“I’m not ‘newly diagnosed’ so I don’t need this group.”
Long-term survivors can help newly diagnosed — you give them hope! Groups also provide updates on therapies (new and existing treatments), conversations on clinical trials and even speakers on pulmonary rehabilitation and other topics that are good for people who are stable and managing well.

“Support groups are too far away, and I can’t leave my house.”
This is sadly the case for some people who live too far from groups or don’t have transportation to meetings. PHA provides online support in the form of email mentors, daily online chats and Google and Facebook groups. Earlier this year, the organization officially launched myPHA, a new online social network for patients and caregivers (www.myPHAssociation.org); it’s a one-stop shop for community connection, support and learning. You can find people like you (age group, type of PH, geographic location, etc.) and discuss the topics that you care about.

“I don’t have Internet access; I can’t connect online and can’t get to a support group.”
PHA always provides instant connection with the Patient-to-Patient Support Line (see number below). PHA also hosts monthly telephone support groups for caregivers (all) and patients. Call the Support Line for more information.

What about the Caregivers?
Right now as I write this, the flight attendant on my plane heading back to D.C. is telling us to “put your oxygen mask on first before putting it on your child.” I had to pause and laugh as this is the classic caregivers’ dilemma — we have a hard time remembering our own needs.

A support group is a good way to make “me time.” It’s something you can do together with your loved one. While at a meeting, you can learn about various topics relating to PH, receive support you may not have even realized you needed, all the while strengthening your relationship (multi-taskers, rejoice!).

If you’re a caregiver reading this, you know we try to be perfect and do our best, but there is no such thing as a “perfect caregiver.” When you come to a support group meeting, you can learn from other caregivers and find relief to connect with others who know exactly what you’re going through.

When I first started talking to other caregivers, I saw so many similarities in their journey. I told them about all the caregiving mistakes I’ve made, about how my attempts to be “perfect” led me to experience huge burnout. Others told me that they, too, were sick all the time, disconnected from friends, pushed their needs to the side because their loved one was always priority number one.

It’s easy to ignore our own needs; it seems selfish and inconsequential when our loved ones are battling medication side effects, oxygen, and hospitalizations. Who has time (and who cares) for “me time”? If you’re in it for the long haul, you need to make the time. Support groups can be a good time to relax and take a break.

The bond I have with my sister grew stronger as we made mutual friends within the PH community and kept in touch with them during her journey.

PHA also has educational resources for caregivers, like educational webinars and booklets that teach you how to pace yourself, avoid burnout and understand depression (which is not uncommon with this diagnosis). You can connect with other caregivers online and join a community of caregivers through myPHA.

I thought she would only live for two years after her diagnosis, and now my sister is 16 years into PH. I thank support groups and the work of PHA for keeping her (and me) informed, sane, connected and loving life.

Pulmonary Hypertension Association
801 Roeder Road, Suite 1000
Silver Spring, MD 20910
Phone: 301-565-3004
Fax: 301-565-3994
Email: [email protected]
Patient-to-Patient Support Line: 800-748-7274
www.phassociation.org

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