How I Learned to Be a Better Support Group Leader

When you're the main person responsible for getting people together to talk about negotiating life with a chronic illness, there's more to do than just make sure people show up!

My support group has an interesting quality to it: We want to not be bound by rules, and we want to just show up and talk.

There was a time when I found it difficult to keep everyone on topic, because conversations ranged from moose hunting in Canada to someone’s daughter studying penguins in the Arctic. I was ready to tear my hair out!

What We Were ‘Supposed to’ Talk About vs. What We Talked About

Support group training encourages groups to follow lists of “relevant” topics and in-depth discussions. Clearly, my group was different. All eight people did not want to talk about the latest clinical trial for a certain drug. My group had other ambitions and ways of communicating.

People in the group spoke about life, and I needed to learn to read between the lines.

One thing was for sure: Everyone was busy with life. So instead of getting upset that people couldn’t attend a meeting because of a grandchild’s soccer match, I started to change my thinking.

At first, I was taking things personally, thinking I wasn’t interesting enough for the group, or the material that I wanted to focus on was boring. But they were saying something else, and I was learning that I had to listen. Really listen. My group was living life, not focusing on multiple sclerosis (MS) or themselves!

Here’s how listening to three of the men in our monthly MS group meeting got me thinking differently.

Greg, the Storyteller

First, there was Greg, the storyteller. He entertained us with stories about his Dutch heritage and how his last name was shortened to Straut from Strautmacher, which means “street maker.” He himself is a mason and loves stonework. I got the impression that he would do more with stones if he could.

But he acknowledges that he is aging. He has had two bouts of COVID-19 and is now on oxygen. He talks about his wife being a good nurse and how he uses a wheelchair. So I got that he is struggling with COVID as well as MS. I also got that his wife is his primary caregiver.

George, the Family Cook

George loved taking care of his family. Always the cook! He shopped and made them some special things for dinner. I know he took pride in doing that.

Knowing this, I asked if he was still cooking. To which he replied, “Not so much.” I knew something had changed there — and I did not have to directly talk about MS or medication to recognize that change.

George told me he had slowed down. He said he was still swimming and had just started a yoga class. But I could see a shift in family dynamics. His wife was taking on more cooking. All this just came out naturally as George spoke to the group.

Since this was such a matter of pride, he had to say it himself. It made me sad, because in the past, he and I had hung onto shopping carts and shopped together.

Phil, the Artist

The third person on the monthly call was Phil, who sent us coded messages about MS through his artwork. He had done numerous sketches with broken wires representing demyelination and lack of communication from the brain. He even did a whole series with needles representing his daily Copaxone injections.

Phil was diagnosed with MS much later than I was. He was diagnosed in his fifties, while I was diagnosed at age 20. I seemed to follow a pretty standard course, documented in the medical literature. Phil is shaky but still ambulatory.

Like me, after about two decades, he progressed to secondary-progressive MS, and then to nonactive secondary-progressive MS, as episodes of inflammation became less frequent.

Interestingly, Phil never complained of heat intolerance until he was on the call for the MS group meeting. He blurted it out during our meeting that he had been experiencing heat intolerance. He must have felt comfortable enough to share this.

Supporting People Where They Are

Through these conversations, I learned that leading a support group was different from making lists and keeping members on track.

Instead, I needed to find a way to listen and to see individuals’ forests through the trees!