I am just back from the IMF's first Support Group Leader Retreat and I have to report that it was an amazing experience. Over the years, support groups for myeloma patients and their families have sprung up all over the world. Currently, there are over 50 support groups in the US and an additional 21 in other countries. It's clear that people with myeloma want their own support groups.
These groups meet in a variety of places: churches, hospitals, private homes, and at the Wellness Community centers. Almost without exception, either a patient or a caregiver leads the group. Often, this person has no prior experience but is a very special individual who recognizes the need for patients to share experiences, knowledge and support. These leaders do an outstanding job, often coping with their own illness and treatment while they continue to provide the leadership and guidance for their group.
The goal of the Support Group Leader Retreat was to bring people together, to learn from each other's successes, to share important information on a variety of topics - and to see how the IMF can be of help. Leaders from groups all across the US and Canada were on hand for an intensive weekend. We learned how to "Stop Smiling Start Kvetching" from Barbara Held, Ph.D., who has written a book on that topic and taught us that it's OK not to always try to keep the chin up or put on a happy face - in fact it's good for us! There were workshops on fundraising, public awareness and advocacy - both political and patient advocacy. The most intensive session, "How to Be a Good Facilitator", was lead by Greg Pacini, Vice President of the Wellness Community, St. Louis, and taught us how to be a good traffic cop! But when he talked to us about how to cope with a loss in a group, our group had a meltdown. It seemed to happen almost spontaneously - 30+ people all having a good and long overdue cry. Greg led us through it and out of it, and I can honestly say that it felt great.
The weekend flew by and ended with a firm commitment to make the IMF Support Group Leaders Retreat an annual event. We walked away having experienced something very special and having formed a strong bond with each other. And, we drafted what we hope will become the support group mission statement: Empower patients through education, reach out to caregivers and provide hope to families. I look forward to seeing all the leaders again at next year's retreat.