Pulmonary arterial hypertension (PAH) is a rare condition. The American Lung Association estimates that each year, just 500 to 1,000 people in the United States are diagnosed with PAH. If you are living with PAH and feel like no one understands what you’re going through, know that you are not alone. Joining a support group can help.
“I have always loved support groups,” said a member of myPHteam, the online support group and community for people with pulmonary hypertension. “Find a support group fast,” said another member. “They can help you get lots of answers and support.”
PAH is a form of pulmonary hypertension (PH), a condition that produces hypertension (high blood pressure) in the arteries that carry blood from the heart to the lungs. PAH damages blood vessels in the lungs, reducing blood flow and causing the heart to work harder. This condition can occur alongside lung disease and heart disease and, in some cases, leads to heart failure.
Between 15 percent and 20 percent of people with PAH inherit the condition, so you may have a family member who can relate. If not, consider seeking out others who understand your journey. Here are four tips to help you find and connect with PAH support groups.
The first step toward finding a PAH support group is to understand all the benefits that come from joining a community of people with shared experiences. A support group can improve your quality of life by allowing you to do the following:
Although there are many benefits to joining a support group — you might even make new friends — identifying what you hope to achieve is essential. Consider journaling about it or talking to a close friend to help narrow down your reasons for joining a support group. Next, it’s time to consider what type of support group might work best.
The COVID-19 pandemic forced many support groups online. What initially seemed like a negative situation has had positive results, with people finding new ways to connect. You have more options than ever for finding and creating a community, no matter where you live.
When you think about joining a support group, consider whether you would be more comfortable participating in person, online, or both.
Local support groups usually meet regularly, such as weekly or monthly. They might gather in a hospital conference room, at a church or library, or in someone’s home. Some groups may also meet for walks or other low-impact physical activities that provide a comfortable environment for sharing. In-person support groups offer participants the opportunity to connect face-to-face with others who can relate to life with PAH.
Depending on your work, family, and other commitments, you may find it difficult to attend an in-person meeting. Also, due to the rare nature of PAH, there may not be a support group in your immediate area. If you do find a group, you will have the opportunity to create connections and develop new friendships with people who likely share some of your questions, concerns, and experiences.
Connecting online doesn’t make interactions any less meaningful. Although you may not be able to hug each other or put your arm around someone having an emotional response while sharing their story, video technology can help you feel like you are in the same room. Some online groups also offer the benefit of 24-hour support because members live across the globe.
Members of myPHteam share what their online community means to them:
You don’t have to choose one format or the other. Some people attend in-person meetings to get the face-to-face connections they need, and they participate in online groups to get daily support. It’s your PAH journey, and you get to decide what type of support will benefit you the most.
If you know why you want to join a support group and have considered the benefits of in-person meetings and online support, it’s time to start searching for a group. We’ve provided resources below to help you get started.
The Pulmonary Hypertension Association (PHA), a nonprofit organization, focuses on PH and PAH research, awareness, caregiver support, and more. Visit their website at phassociation.org and search their support group map to browse in-person and online options. If there’s no support group in your area but you’re willing to start one, fill out the PHA volunteer form for help.
The American Lung Association is working toward a world free of lung disease. In addition to offering research, education, in-person events, and other resources, this nonprofit also sponsors online support communities for people living with PAH, pulmonary fibrosis, chronic obstructive pulmonary disease (COPD), and other lung diseases. Their Living With PAH support group is also open to caregivers, family members, and friends of people who have PAH.
If you have a Facebook account, search for “pulmonary arterial hypertension support” and related words or phrases. Chances are you’ll receive a list of groups to explore. Keep in mind that anyone can create a Facebook group and set the tone, so you may need to try a few groups before finding one that feels supportive and comfortable. When you find a group you like, introduce yourself, post questions, ask for support, and share your story to help yourself and others.
Using hashtags like #pulmonaryarterialhypertension, #pah, and #chronicillness should help you find supportive Instagram accounts for people living with PAH and other rare conditions. The interactions will be more passive — you respond to content others share — but you can increase connection by liking and commenting on posts. You can also share your own content and include relevant hashtags to help others find you.
People living with PAH and other conditions sometimes create blogs to share their experiences. Blogging offers a way to process their diagnosis and emotions or share health updates with loved ones. Sometimes, posts can provide a way to connect with others who are living with PAH.
Searching online for “pulmonary arterial hypertension blog” generates a list of blogs and websites to explore. As with all online information, question the sources and talk with your doctor before following any medical recommendations. When you find a blog you like and trust, consider engaging by commenting on posts that resonate or emailing the author.
If you’d like one-on-one support in addition to or instead of joining a support group, you might want to enlist the help of a therapist. A trained mental health professional can help you with:
Online therapy is available through services like BetterHelp and Talkspace. To find a local therapist for in-person support, check with your health insurance company for a list of providers, ask your primary care provider for a referral, or see if trusted friends and family members have any recommendations.
In addition to the resources listed above, ask your health care provider for support group recommendations. They or someone on your care team, like a social worker or case manager, will likely be familiar with PAH and PH resources in your area. You can also ask for support group recommendations by posting a question on myPHteam.
Your friends and family may not be able to relate to your life with PAH, but they love you and want to help. If you need a hug, a compassionate ear, or someone to join you for a walk or a cup of coffee, tell them how they can support you. Although PAH is a rare condition, you are not alone.
On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 48,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension and pulmonary arterial hypertension.
Are you looking for a PAH support group? Have you found a group you enjoy? Share your experience in the comments below, or start a conversation by posting on your Activities page.