I wish I could remember what I first thought of when I heard the words support group. Once I was diagnosed with my condition, nearly 12 years ago, I didn’t waste any time contacting the Muscular Dystrophy Association. Did I ask about a local support group or did they just volunteer the information? I so wish I could remember.
The support group met in a small conference-style meeting room at a local hotel. People gathered around a long, white table-clothed rectangular table. The attendees were diverse in their age and severity of noticeable symptoms. It was a bittersweet experience and I wasn’t quite sure if I belonged.
The facilitator tended to dominate the discussion. I remember a couple of guest speakers at future monthly meetings but other than that content, I mostly remember hearing a lot of venting by the facilitator. Somewhat abruptly after only a few months of attending the group, the facilitator decided to quit after leading the group for 13 years.
Again, I remember very little of the scenario of events, but somehow I was asked to be the facilitator. Also at this time the hotel decided they could no longer afford to donate the meeting room. I accepted the challenge and used some connections to find our new location at Kaiser Permanente Hospital. We still meet there, monthly, and now offer a quarterly Caregiver’s support group and quarterly Myotonic MD group.
Last month I began facilitating another MDA-sponsored support group in San Jose. This group’s location is at a mega-church in their “Multi-Purpose Room” which apparently means anyone can enter the room as a conduit from getting from point A to point B. As the saying goes in real estate, it is also true for support groups as well, “location, location, location.”
Although my role as a support group facilitator is a departure from my predecessor’s (I don’t use the group as a soapbox for venting), there still needs to be a sense of a safe and private space. Little venting takes place but people do share about their feelings and discuss sensitive topics. At a later time I will address this topic of support group location again but suffice it to say, I’d like to find another location for the San Jose group.
For a recent MDA Seminar which I attended to promote our support groups, I drafted a list of Top 10 Reasons to Attend Support Group Meetings:
- Meet other people with a similar condition.
- Listen to guest speaker presentations on relevant issues including physical therapy, financial planning, accessible housing, or navigating public transportation.
- Practice adaptable exercises such as chair dancing or seated yoga.
- Find out about local resources such as health fairs and expos, nonprofit organizations, and special events for people with chronic health conditions.
- Speak directly with the MDA Health Services Coordinator.
- Share with others your tips & tricks for living with a chronic health condition.
- Learn techniques to help manage your fatigue, nutrition/diet, exercise, and relaxation.
- Hear about the latest MDA events — where you can learn, help raise money, or just have fun with other MDA families.
- Discover new ways of doing things through demonstrations, videos, and other support group members.
- There is research evidence that people who attend support groups for chronic health conditions experience psychosocial benefits such as improved coping skills, lower depression, less stress and anxiety, greater sense of well-being, and enhanced quality of life.
Some of these reasons are specific for MDA but perhaps apply to the health organization affiliated with your chronic health condition.
Feel free to add your reasons to attend.