These Are My People: The Power of Caregiver Support Groups
Eight years ago, I attended my first #MEAction caregiver support group meeting. I had no idea at the time how much that one meeting would change my life.
After years of feeling alone as a caregiver, I finally felt seen, heard, and understood.
I was used to being “the strong one” and the “problem solver.” But carrying so much of the emotional weight and responsibility of caring for my husband, who had become disabled by ME/CFS, could be incredibly lonely.
None of my family or friends had even heard of ME/CFS. They didn’t understand what it was like to fight for medical care, insurance coverage, prescription refills, accommodations, disability benefits, and so much more—all while trying to support someone I loved through a debilitating illness.
Then I walked into that first caregiver support group, led by Denise Lopez-Majano and another caregiver.
I immediately felt like I was home.
I remember thinking, These are my people.
I could relax. I didn’t have to over-explain our lives or worry about whether someone believed my husband was truly ill. The other caregivers understood many of the challenges I was facing because they were living them, too.
At that very first meeting, I met another partner caregiver whose two children were the same age as ours. We exchanged contact information and soon began talking every weekend because we had so much in common.
A few months later, I asked Denise if I could start a spin-off group specifically for partner caregivers. I’m so grateful she immediately said yes, recognizing that partners face some unique challenges.
That was 7½ years ago.
I’ve been leading the #MEAction partner caregiver support group ever since (please note that any type of caregiver is always welcome). I discovered how much I loved bringing caregivers together, choosing meaningful topics for discussion, and creating a place where people could speak honestly about what they are going through.
Eventually, I began wondering: What else could I do to help caregivers?
When my corporate position was eliminated a few years ago, I decided to pursue the work I had been dreaming about: becoming a caregiving coach and eventually creating Caregiver Wisdom.
It all traces back, in many ways, to that first support group meeting.
And over the years, I’ve come to see support groups as a powerful form of community care.
We show up because we need support ourselves. But simply by being there—listening, sharing, understanding—we also help someone else feel less alone.
Resources:
If you'd like to attend the free Caregiver Wisdom monthly support group meeting, join the free weekly email newsletter and you’ll receive notifications of upcoming meetings and other caregiver support resources.
You can also see a list of other ME/CFS, Long COVID, and related illnesses caregiver support group meetings on the Caregiver Wisdom Resources Page and AMMES has a pretty comprehensive list of many different types of support groups.
Denise and I recently spoke at a MassME Sunday Conversations webinar to share our experiences as support group leaders. We were joined by two support group leaders for people with ME/CFS and related illnesses. Here's a video recording of the “Insights and Inspiration from Support Group Leaders: The Power of Shared Experience” MassME webinar.
