In late 2020, the Hypertrophic Cardiomyopathy Association (HCMA), started a new program: Online Discussion Groups. These peer support groups were solely for people with the genetic heart disease Hypertrophic Cardiomyopathy (HCM) and their families. For nearly a decade, since my own diagnosis with HCM, I had been bemoaning that I knew hardly anyone with the disease and was itching to swap stories with others who fully understood what I was going through.
As my friends will tell you, I’m a bit of a joiner, so when this opportunity arose, my excitement level was such that I didn’t just want to participate; I wanted to be a Discussion Group Leader.
Upon sharing this news with a college friend, she said “this is very ‘on brand’ for you.” I took that as a compliment. Thus, I volunteered, alongside a group of about a dozen other HCM patients, to lead this new venture.
Let’s discuss how this program works.
A support group is “a gathering of people, either in person or virtually, who have a common condition, issue, or life circumstance in order to receive and offer mutual support and coping skills.”1
In this case, our common condition is the genetic heart disease Hypertrophic Cardiomyopathy, and we gather virtually on Zoom. And while each individual case of HCM can be quite different, there are a million shared experiences. Those commonalities are a great starting point for conversation, regardless of age, ethnicity, geography, or any other factor.
The monthly group that I lead is entitled “Life with HCM,” and as I like to tell my participants, the label is intentionally meant to be a bit vague. I want people to know that anyone, newly diagnosed or longtime patient, can sign up to talk about whatever is going on in their daily life managing HCM.
Topics range widely and may include:
Medication Management
Preparing for Open-Heart Surgery
Debating whether to move forward with an implantable cardiac device (such as a pacemaker or defibrillator)
Communicating with family members who won’t get genetic testing or educate themselves about the disease
Visits with doctors at our HCM Centers of Excellence (COEs)
Symptoms (many of which would sound unbelievable to anyone who has not experienced them)
Exercise with HCM
…and much more.
I start each session by asking participants to share what brought them to the meeting so that we can, hopefully, cover all the topics they want to discuss, and I can get a sense of which attendees have similar experiences to share. This framework enables the rest of the conversation to flow freely from one topic to the next.
Now, let’s discuss why these peer support groups work so well and are growing in popularity.
The first reason is that cardiologists, who care for overall heart health, and electrophysiologists, who specialize in the heart’s electrical system, are not therapists and therapists (mostly) don’t have HCM. There is enormous value in our HCM doctors, and there is enormous value in our therapists (I talk to mine every week!), but there is something different about talking to someone else living with your illness.
The Mayo Clinic says:
For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support. Your relationship with your healthcare professional or other healthcare team member may not give you enough emotional support. And while your family and friends may help you, they may not understand the full effect of a disease or treatment. A support group among people with shared conditions or situations may work as a link between medical and emotional needs.2
It’s important to note that these discussion groups, or any kind of peer support group, should not be used as a replacement for a physician or a therapist. I am not a therapist, nor are any of the other HCMA Online Discussion Group Leaders. However, we have received training in HIPAA laws and how to successfully moderate these conversations.
I frequently say things like, “I am not a doctor” or “That’s something you should ask your doctor about. However, here’s what my personal experience with this has been.” And then I ask other attendees to share their experience with that same issue.
A comprehensive way to describe the distinction in our work from other avenues for support is:
Support groups can offer communal relational support which can have significant benefits and can effectively augment individual therapy. Support groups can be a powerful way for participants to gain emotional support and validation, strengthen social connections, experience stress reduction, learn new coping skills, discover new information about themselves, and feel empowered.3
Another reason for the success of support groups is the epidemic of loneliness. Exacerbated by the COVID-19 pandemic, people are seeking ways to connect, and Zoom (or other online platforms) are such an easy way to do that. Offering this type of support online provides significantly greater accessibility, both for people with disabilities and people around the world. When I started moderating these groups, I had spoken to, maybe, three or four other people with HCM, but now I’ve spoken to several hundred people all across the U.S., and as close as Canada or as far away as Australia.
Support groups have never been more important. People are significantly more lonely and isolated than ever before. It is estimated that about 40 percent of the population in the U.S. have reported feeling lonely, a situation which is correlated with a significant increase in mental and health-related issues.4
I am fortunate to have a lot of fantastic friends and a good support system, so I wasn’t lonely in my life. Yet, I was lonely in my diagnosis. I often hear the same from attendees.
A study published by Oxford Press and supported by the National Institute of Mental Health in the UK looked at “The benefits and challenges of established peer support programmes for patients, informal caregivers, and healthcare providers.” Their results identify several other benefits to support group participants, all of which I can attest to:
Participants saw and interacted with role models like themselves who overcame disabilities, something they rarely encountered in their daily lives. Observing and interacting with role models with the same illness who were able to achieve life successes could increase self-esteem and feelings of empowerment.
Programme participants said they learned practical information about managing their health condition through talking with others whom they met through the peer programme.
For some caregivers, engaging in peer support programmes was a fundamental way in which they coped and managed the illness of a loved one and also enabled them to engage actively with physicians.5
Moderating these discussion groups has proven to be as beneficial for me as it (hopefully) is for the attendees. The UK study results explain that as well: “Peer supporters said that they found emotional and social benefits by serving as role models and coaches, and that increased their confidence in their own ability to overcome challenges related to their health.”
My goal is to let the group talk amongst themselves as much as possible, while I act as the moderator. But, inevitably, a portion of that one hour each month is spent answering tough questions about my own journey with HCM and being that “role model” the Oxford Press study talks about. I think it’s important that I am willing to be just as vulnerable as anyone else in attendance. I also need to take my own advice, by behaving in the same proactive way I encourage others to.
And the best bonus of moderating the group is feeling like I am part of a special community.
As with all things, especially things online, one must be cautious of some aspects of peer support groups. Privacy and confidentiality are big ones. Participants are asked to keep everything they hear in the group to themselves afterwards, but there are no ironclad ways to monitor that.
There is also the danger that someone in the group will provide unsound medical advice. As I’ve mentioned, I continuously guide people towards sharing their own experiences, rather than giving specific advice when they are not a doctor, but it can still happen on occasion.
You may also get “that person” in the group. “That person” may be a complainer. Perhaps an overtalker. They may be an HCM know-it-all. As with all groups, these are just simply personalities to navigate so that everyone in attendance gets the greatest possible benefit out of the experience.
I do step in when someone has taken over the conversation in a negative way, but the fact that we all have this shared experience as HCM patients helps to mitigate most extreme circumstances.
At the top of this piece, I included a collage of photos of my face. Each of them was taken by an AI note-taking tool that we use in the Online Discussion Groups. While the notes are never shared, for privacy reasons, I do receive a post-meeting summary in my email inbox that occasionally includes a snapshot of my “I’m moderating this group” face, taken at a random moment during the meeting.
As you can see, I look as engaged and fulfilled in the moment as I feel after each session is complete.
Each issue of "What's Her Problem?" includes questions for further discussion. You can Leave a Comment publicly below, or become a Paid Subscriber to join the conversation in the private community Chat.
This week’s question:
Have you attended a peer support group for an illness or disability? What benefits did you get from your participation, and what were the challenges?
Joo JH, Bone L, Forte J, Kirley E, Lynch T, Aboumatar H. The benefits and challenges of established peer support programmes for patients, informal caregivers, and healthcare providers. Fam Pract. 2022 Sep 24;39(5):903-912. doi: 10.1093/fampra/cmac004. PMID: 35104847; PMCID: PMC9508871.
Hi Deb! 👋
I'm also a moderator for the pre-transplant group with the HCMA. It's really a necessity to fill in the gap between the diagnosis and the treatment. So happy to see you sharing here.
Thanks! I try my best.