When I Was Asked to Lead My Chronic Illness Support Group

When I was diagnosed with myotonic dystrophy, I don’t remember hesitating before making my way to a support group meeting. I didn’t have preconceptions; all I wanted to do was meet others with the condition. The meetings I went to were for anyone with a neuromuscular disease, not just myotonic dystrophy. We met at a hotel in a conference room with long
tables covered with starched-white linens. The facilitator dominated the
conversation, and I’m not sure if I even had a chance to introduce myself.

Ironically this facilitator had been leading the group for 12 or so years and was burnt out. Shortly after my arrival, she left the group and I was asked to facilitate. I had no previous training. I worked as a multimedia producer and all I really had to fall back on were a few years of teaching experience.

But I did it.

There was no handbook, no training and no encouraging words before I was thrown into the pool of humanity dealing with, at the very least a chronic health condition and other times excruciating life-or-death challenges.

Through trial and error I learned how to guide a group of people from various social strata and cultural backgrounds to become a community engaged in learning and sharing. My greatest challenge has been dealing with difficult people. You know who they are – the person who is wed to a negative point of view, or maybe it’s the person that seems to feel they know it all, or the person that just can’t stop talking and dominates the conversation.

But somehow I learned strategies to really facilitate a meeting so there are fewer and fewer roadblocks. I try to keep the flow of the meeting moving toward a positive goal. Certainly there are times when a person may have a special need, but pulling from my ever-growing bag of tools and resources, I can take someone offline and re-focus toward the group. Generally we have a topic or guest speaker. My aim is to increase our education by learning from each other as well as guest presenters.

We’ve practiced yoga, tai chi and even meditation together. Health care professionals have talked with us about occupational, physical and respiratory therapy. Community organizations have explained how to access service dogs, free telephones, in-home health services, and para-transit vehicles. Other support group participants have shared how they work with a personal trainer, traveled domestically and internationally using a wheelchair, and created makeshift tools to help them do everyday tasks in and
around their home. Together we took sailing and kayak adventures through
adapted sports programs. Together we memorialized a long-time member by
celebrating his life.

That’s what support groups are about. You meet people you might never have met – humbled in their life path by a force nearly greater than them –and together you learn how to navigate this new path.

It’s hard to imagine where I’d be if I hadn’t been asked to take on this role as a support group facilitator. Perhaps it was initially intended to be a service to others, but I’ve ended up really helping myself.