In meeting the challenges of CFIDS, a support group can make a big difference in your self esteem and sense of hope. This is particularly true if you have been recently diagnosed and are bewildered by all the confusion and ambiguity surrounding this syndrome.
Some supports are more effective than others in this regard. I have seen many people benefit tremendously from support groups. And now, there’s scientific evidence that being in a support group can actually speed the healing process.
On the other hand, many current and former CFIDS sufferers have told me that they quit going to support groups because they found it a depressing and demoralizing experience. They actually felt worse afterwards, emotionally and physically. It seemed that what was being supported was an attitude of helpless and hopelessness.
Why the mixed reviews on support groups? Clearly there is a wide variation between different groups. The success of a group is determined by its approach to three important elements: education, interpersonal support, and healing. Picture a triangle with each of these elements as one point, each connected to the others. Without any of these elements, the triangle would be incomplete, and the group wold not live up to its potential.
The educational function of a support group is to give accurate, unbiased information about the illness and effective ways to cope with it. A CFIDS support group should take care to challenge the misinformation or mistaken views in every meeting, and not allow them to flourish. Common myths about CFIDS are as follows:
Myth #1: You’ll always have this disease. The truth is that most people get better over time, and a significant portion of people recover completely. Even the most extreme cases—people who have had the disease for ten years or more—have recovered.
Myth #2: This is a contagious disease. This is NOT a contagious disease. Rather, it is a complex chronic illness with multiple contributing factors. No one single factor, such as a virus, is enough by itself to cause the syndrome. The issue of contagion does not apply, however, to the false despair that fear and misinformation generate.
Myth #3: There is no effective medical treatment for this disease. There are several different traditions of medicine available in this country. Conventional western medicine excels in surgery and emergency medicine, but no cure for chronic illness like CFIDS. However, it can help a great deal with some symptoms. Homeopathy, Chinese medicine, herbal medicine, naturopathic medicine, Ayurveda, and other traditions have all been used effectively by people who have recovered from CFIDS.
The social isolation endured by many people with CFIDS is a real obstacle to their healing. Recent research has found that poor social support is a risk factor in recovery from this illness. People who have supportive relationships, combined with using a daily self-healing practice such as meditation, do best. People who have little social support, even if they do a lot of daily self-healing practice, don’t do as well. Such support includes three aspects:
1. Validation of Feelings. Interpersonal support happens within group meetings when people share their feelings, their gains and losses, and simply listen to each other with compassion. By sharing your feelings, they become more tolerable. Whatever your feelings are, positive or negative, they are valid. You can also help others to see that they are not alone in what they are feeling.
2. Sharing Success Strategies. Another important aspect of interpersonal support is the sharing of strategies that people have found success in managing their symptoms. The real experts on this illness are people who experience it every day. It’s very important to talk about what works in daily living, and reinforce that in each other. Share with each other how you have applied the 50% solution, how you use rest strategically, how you deal with the sleep disorder, or how you handle stress.
3. Continuity Between Meetings. Finally, interpersonal support need not end when the meetings ends. Connect with each other during the week, by phone if not in person. One effective group used a “buddy system” in which people paired off and called their partner on alternate days of the week to offer encouragement and reinforce other’s healing practices.
Support groups can become healing groups. A healing group is a group in which healing actually takes places within the meting itself. It may seem like a bold move to begin incorporating healing activities into your support group meetings, but it can easily be done and may groups are doing it now. Here are a few ways to incorporate some healing time into your support group meetings:
1. Reserve a block of time in each meeting for healing activity. This may be the second half, or the last half hour, at least.
2. Use the time to listen to tapes of guided self-healing practice. This may include meditation, healing imagery, or breathing exercise (not informational tapes about CFIDS!)
3. Share your expertise with each other. Many group participants have expertise in strategies that can be shared with others in the group. You need not be a professional to do this. If you have a particular routine that works well for you each day, someone else in the group may really benefit from your “teaching” it.
4. Invite guest healers to come and share their work. Therapists and other people who teach healing methods can come and guide the participants through an experience of their work. They appreciate such opportunities to become more known in the community because they are always looking for new clients.
Methods which can be taught and practiced in support groups include: meditation, healing imagery, relaxation techniques, breathing techniques, laying-on-of-hands, art therapy, therapeutic journal writing, or a prayer circle (consider giving each person a turn being the focus of the group’s prayers).
A support group need not just be an “information clearinghouse.” Rather, it can be a live experience to all who are participating. When support groups become healing groups, a great deal of new potential is available to all.
Editors Note: Dr. Collinge began working with CFIDS during the Lake Tahoe epidemic in the 1980s. His book “Recovering from the Chronic Fatigue Syndrome: A Guide to Self-Empowerment” (Putnam, 1993) and a set of tapes, “The Home Self-Empowerment Program” are available from the CFIDS/Fibromyalgia Health Resource.
“One effective group used a ‘buddy system’ in which people paired off and called their partner on alternate days of the week to offer encouragement and reinforce other’s healing practices.”