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Support Group Leader Summit 2012 - Facilitating with Hope

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SGLSummit_app.jpgThis session was led by Greg Pacini,  MS LPC CGP, a licensed certified counselor specializing in the treatment of living with chronic illness and author of Journey Beyond Diagnosis.

Addressing the fact that almost all of our support group leaders are patients or caregivers themselves, he first talked about the whole experience surrounding a diagnosis of myeloma. The experience of feeling out of control and powerless. Like being on a rollercoaster. Then he asked them: "How has it been for you feeling like a rollercoaster managing the ups and downs of your group?"


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The responses from the room were very interesting. Lorelei from Canada remarked that it is scary and exciting. The ride is different for everyone. Someone else said that they have varying levels of wellness in their group. They need to manage the highs and lows. Teresa Miceli, a nurse who facilitates the Mayo Clinic group commented that as a facilitator, she feels her personal energy level can affect the group. She feels she needs to make sure her energy level is up. She wants to be present for the group. Greg responded that it is not necessarily important to be up. Allowing the group to know that you are a human being with good days and not so good days is a good thing too. You let them in.


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He talked about the challenges of losing group members. He acknowledged that they experience loss not only because they are the facilitators, but because they are also friends of the members. "We are powerless over the illness. There is nothing we can do but be present." He talked about his own experience facilitating a group in which he carried the pain of the members into his own life. "I was taking a little bit of everyone's pain with me. But I realized I cannot do it either for me or for them. I let it go because it does not belong to me. If I take someone's pain, my message to them is that you cannot handle it yourself. You are not powerful. But we are all powerful."

He addressed the discussion of death and dying within the groups and said an interesting thing. He said that he believed if, as the facilitator, you are uncomfortable discussing death then you will attract people who feel the same way. The group will follow you and go where you go. The people who want to discuss it will feel like outsiders and will not come to the group. But if you are open to talking about things, people will talk.

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This caused some anger in the room. One support group leader said, "I am told all the time that the reason I come to your meeting is because it is positive. If I came here and you were talking about death and dying I would not come."

Greg said that you just have to be ready to create the invitation to talk about it. He said that you can admit that you may be uncomfortable about a topic. Admit it and let them in. By doing so you make space for every emotion--fear, anger, and hope.

He told them that when they step into their role as facilitators, they need to create healthy boundaries for the group (i.e., time monitoring, limiting crosstalk, no one interrupts) within which experiences can be shared. The boundaries create a containment that in turn creates a feeling of safety. Within the boundaries, you trust that the group will go in some direction that is reasonable.

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As facilitators, he told them, you have other responsibilities besides creating healthy boundaries. He told them, "You are the goal setters, the focus managers. Your curiosity invites sharing. 'What was that like for you? How do you feel tonight?' By restating what was said, you invite reflection. Question the question to find out what may be bothering them that they asked it." He reminded them to acknowledge difficult emotions. To accept them, and to hold on to hope.

He closed the session with a beautiful song he wrote called "It Will Be."

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