Group supports whole family
Alice James, chairman (left), Connie Pich, Terry Myers,
moderator for executive committee, and Elaine
chairwoman of the membership committee
The Black Hills CFS/FMS Support Group of Rapid City, S.D., is a group of people with a common bond, sharing concerns, feelings, experiences, strengths and wisdom. It benefits from a diverse group of talented people who share their skills in public speaking, designing business cards, teaching a CFS/FMS self-help class, offering notary services and much more.
Its goals are basic: to provide hope and to educate and support one another.
"We have carried the goals to support one another a step further, said leader Alice James, "We have put an emphasis on supporting the whole family."
Friends and family have always attended group meetings, but two years ago, a separate family/friends support group was created. It meets with the regular support group for the first hour, when a speaker will be scheduled, and then the groups meet separately. This gives the family and friends a chance to share their concerns, feelings and experiences, too.
"We actually have four groups running the second hour -- a large group, a small group, a newcomers group and the family support group (members are free to choose any group depending on their own comfort level on that day). We so often hear people say during our sharing times, 'Finally, someone understands how I feel. I'm not along,'" said Alice James.
When a member is dealing with not being able to be employed anymore or attempting to get Social Security disability benefits, the group is especially supportive of them. There is a Hot Line/Pen Pal List to call or be called in times of crisis or when a member just wants contact with someone else who has CFS/FMS. There's also an E-mail PenPal list.
The Black Hills group also recognizes the power of the news media. It has a dedicated media person, and local television and radio stations and newspapers have been very cooperative in covering CFS/FMS issues.
The group gathers information from all the national organizations it is aware of, and in turn makes those organizations aware of its presence. A large selection of brochures is available at no cost at meetings, and an introductory packet was developed to welcome newcomers. Membership has grown from 60 to nearly 500, and many members volunteer to fill various essential roles.
"We find that having a guest speaker keeps the meetings interesting and informative. At one of our meetings we had a very successful panel discussion (composed of people with CFS/FMS, family members and a psychiatrist) on the effects of CFS/FMS on family, friends and loved ones."
Gloria J. Zeitler said the group helped her personally to come to terms with the illnesses and to accept who she is now.
"Until I accepted that this is my life now, I was killing myself trying to be 'normal'", Zeitler said. "I have also become more human. Having been a perfectionist, nothing mattered but efficiency and the end product. It no longer matters how good I was at my job or how efficient I was or how much I earned, because I can no longer do those things. I've quit beating myself up about it. Now people matter, and that's the reason I keep coming back to the support group."
Elaine Dodson said she credits the group with giving her illness validation.
"The people in the group are the most positive, forward thinking, funny people I have ever met. Even though they are burdened with these debilitating illnesses, they continue to support one another and educate others about the illness."
The group's outreach has included informative table tents displayed in the Rapid City Regional Hospital cafeteria in observance of CFS Awareness Month in March. A newsletter is published twice a year to keep in touch with the members and to announce the upcoming events. A group representative serves on the Rapid City Area Chamber of Commerce Health and Human Services Committee, enabling the group to be visible in the community and to educate the health-care and business professionals on the committee. The group participates annually in the Rapid City Chamber of Commerce's Health and Human Services Health Fair. These citywide events provide excellent opportunities to educate the public.
The group's representative on the Black Hills Arthritis Association Board gives it a voice in the arthritis community. Two support group members were trained by the Arthritis Foundation to teach a Fibromyalgia self-help course. They are also certified to train others, which makes it possible to offer, which makes it possible to offer the course throughout South Dakota and adjoining states.
Products and services may not be promoted at group meetings, but to respond to such requests, the group sponsored a Health/Information Exchange Fair in April 1996 with over 150 people attending from North Dakota, Nebraska, Wyoming and throughout South Dakota. Guest speakers provided education and product representatives were able to display their wares.
Group members have met with school officials to distribute information on children and CFIDS to local schools.
The Black Hills group is unusual in that its leader, Alice James, does not have CFIDS or Fibromyalgia. When a friend and co-worker in the Ellsworth military family housing office was diagnosed, Alice watched her friend's health deteriorate to the point where she had to leave on a medical disability.
"At work, I had to walk by a stack of 28th Combat Support Group letterhead paper, and those words -- support group -- kept jumping out at me. I told Stephanie that I would help her start a support group, and I would provide the energy. That was in October 1994. By January 1995 we had our first meeting with 60 attending," Alice explained.
"I believe that it was part of a big plan that Stephanie and I worked together. I don't think it was an accident that I walked by that stack of support group letterhead paper every day. Stephanie calls strokes of luck or coincidences "God-incidences'." I agree. I continue to experience these God-incidences when I call speakers and they graciously say yes, when doors are opened for television and radio intervews, when someone calls and says that they just happened to see something in the paper on our support group at a time when it was really needed."
Reprinted with permission from The CFIDS Chronicle, a publication of The CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398.
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