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Fall 2000

Support Network
Finding a CFIDS Support Group

By Kris Hopkins

Studies show that support groups play a vital role in the lives of patients suffering with invisible illnesses such as chronic fatigue and immune dysfunction syndrome (CFIDS). Support groups provide a safe place to go where the illness is not questioned and where patients are accepted. They provide a place where information is exchanged and support is received from others living with this illness.

There are many factors that are crucial to the success of a support group. Some issues are related to the group as a whole and some to how the leader facilitates the group. A good support group strives to meet the needs of its members while promoting a positive and productive environment. Here are some basic yet vital characteristics that will help you create or choose a good support group.

Positive climate
Look for a support group where the leader and members create a positive climate. Newcomers and members should feel welcome and encouraged to become part of the group, no matter how long they have been involved. Members should be active listeners, which tells others that they are cared about and that someone is interested in what they have to say. Being heard and appreciated will often ease the difficulties and emotional turmoil associated with any chronic illness.

Meaningful discussion
Perhaps the most crucial role of a good group leader is maintaining a balanced and meaningful direction during the meeting. Living with CFIDS can be an emotional roller coaster for the entire family. Support group meetings are often places where personal frustrations are aired. This is an important role of the group. While the discussion should remain empathetic, it should also remain focused and positive.

Supportive member relationships
Some patients seek a support group to get answers to their questions, empathy or support from others. Other patients, usually patients who have had the illness for a long time, want information on specific topics, such as the latest research or public policy efforts. A successful group encourages interaction among members who have similar circumstances, experiences and needs. This requires understanding where all individuals in the group are in their illness and what kind of needs they want the group to fulfill.

Confidentiality
Trust between support group members is the foundation for a group’s future effectiveness. To develop this trust, members must feel sure of confidentiality. Confidentiality is generally interpreted to mean “What is heard in the group, remains in the group.”

Unfortunately, that doesn’t necessarily mean the same thing to each member. Guide-lines should be established and adhered to strictly by all members. Group members, as a whole, should develop a personal understanding of what confidentiality means to them.

No support group is going to be perfect or be able to meet the needs of every single member. Leaders play an important role in the success of the group, but it’s just as important for members to take an active role. Once you’ve found a group, get involved! Volunteer to set up the meeting room or greet newcomers and long-term members as they arrive. Volunteer to assist with the group’s newsletter or to find speakers for future meetings. Participation really is the best insurance for a good support group.

Looking for a support group? The CFIDS Association of America maintains a state listing of CFIDS support groups. To receive information on the groups in your area, please send a self-addressed stamped envelope to The CFIDS Association of America, Attn: Support Group Information, PO Box 220398, Charlotte, NC 28222-0398; or e-mail your request to cfids@cfids.org.

Kris Hopkins is the Support Network Services Director for The CFIDS Association of America.