Support groups for chronic illness are helpful to many, but not me

Some people might describe me as the type of person who regularly says no to something before coming around to a yes. This might apply to support groups, as I usually don’t join them.

Don’t get me wrong, I’m glad they exist for people with rare diseases like pulmonary hypertension (PH). Many people swear by the community-building, the sharing of common experiences, and the other benefits they offer. I just don’t count myself among them. Maybe I need to swallow my stubbornness and get out of my own way.

When I was making sense of PH during my post-diagnosis recovery in the spring of 2016, I dipped my foot in the support group pool by attending a meeting at a Washington, D.C. hospital. A half-dozen people of various ages sat around a table in a small conference room. People weren’t really participating, so I felt compelled to speak more than a few times. More perfunctory than helpful, this initial experience left a lot to be desired.

Before you try to help someone with PH, know the dos and don’ts

Sometimes a sense of loneliness overtakes me in group settings, like I’m on the outside looking in on the conversation. This happens even if I’m participating. Maybe it’s impostor syndrome or a side effect of stuttering. Whatever it is causes me to question whether I’m making a connection or if people are really hearing me. Tap, tap. Is this mic on?

Going online

In the years following my PH diagnosis, the majority of my community-building occurred online. Through the Pulmonary Hypertension Association (PHA), I found stories describing how other people with PH lived with the disease, struggled to adjust to their new sense of “normal,” and surpassed their life expectancy.

I joined a few social media patient groups as an alternative to doing it in person. Posting messages and chatting with other patients online offered me a better experience. My engagement in these groups started off strong, but the immediacy of the communication became overwhelming, and I took a step back.

Most of my PH community-building efforts are done with my writing and advocacy work. Shortly after the one-year anniversary of my diagnosis in late March and early April, I wrote for the first time about the hospitalization that brought PH to the forefront of my world. After reading that essay, the late Serena Lawrence, a former PH News columns editor, gave me the opportunity to write this column. Writing my way through this disease has been one of the most fulfilling aspects of my life after leaving that hospital bed in 2016. Through writing, I’ve made meaningful connections with patients and advocates in the broader PH community, and I’ve felt less alone in a way that I didn’t experience with other outlets.

For many, a support group can be a powerful tool to counteract the tough aspects of living with a rare disease like PH. It can be difficult for family and friends to understand the more private aspects of this illness, and sometimes we just want to surround ourselves with people who speak the same language.

Pulmonary Fibrosis News columnist Sam Kirton wrote a terrific piece about support groups in the pulmonary fibrosis community. He notes that they are “an important tool for many patient communities, providing education, awareness, and an opportunity for social connection.”

Support groups are such an essential part of the PH community that they’re incorporated into the PHA’s biennial conference agenda. Picture me last summer sitting in a chair circle in a hotel conference room with other long-term survivors. I chose the group because I had just celebrated six years since my diagnosis, and I thought I might find the conversation useful. Despite knowing some of the attendees, I sat there quietly until someone asked me a question that brought me into the discussion.

Perhaps I haven’t found the right support group for me yet. I’m curious to hear from readers. If you participate in a support group, what do you like about it? Or do you struggle to find one that works? Please share in the comments below.

Follow Mike on Twitter: @mnaple.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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