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SUPPORT GROUPS
HELP WHEN ONE HAS A CHRONIC ILLNESS
In meeting the challenges of CFIDS, a support group can make a big difference in
your self-esteem and in your sense of hope. This is particularly true if you have been
recently diagnosed and are bewitched by all the confusion and ambiguity surrounding this
syndrome.
Some support groups are more effective than others are in this regard. I have seen many
people benefit tremendously from our support group. And now, there is 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/or demoralizing experience.
They actually felt worse afterwards, both emotionally and physically! It seemed that what
they gained from the experience was an attitude of helplessness and hopelessness from the
group members.
Why the mixed review on support groups? Clearly there is wide variation between
experiences at support group meetings. When these divergent factors
are examined in more
depth, the following conclusions can be made. The success of a group is determined by its
approach to three important elements: 1) education, 2) interpersonal support, and 3)
healing. They fit together into a triangle. Without any of these elements, the triangle
would be incomplete, and the group would not live up to its potential.
EDUCATION
The educational function of a support group is to give accurate, unbiased
information about the illness and effective ways to cope with it. An effective CFIDS
support group should take care to challenge the misinformation or mistaken views in every
meeting, and not allow them to flourish. Before any new medical news, test, or treatment
is distributed, it must be researched, accurate and well grounded.
INTERPERSONAL SUPPORT
The social isolation endured by many people with CFIDS is a real obstacle to
their healing. Research has demonstrated that if a person with CFIDS has little social
support, they have less chance of recovering fully. People who have supportive
relationships do best.
Such support includes four aspects:
 | Validation of
Feelings:
Interpersonal support happens within group meetings when people share their
feelings, their gains and loses, and simply listen to each other with compassion. Whatever
your feelings are, positive or negative, they are valid. By expressing your feelings, you
also help others to see that they are not alone in what they are feeling.
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| Sharing Success
Strategies:
Another important aspect of support is the sharing of strategies that people have
found to be successful in managing their symptoms. The real experts on this illness are
the people who experience it every day. It’s very important to talk about what works
in daily living, and reinforce that in each other.
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| Continuity
Between Meetings:
Interpersonal support need not end when the meetings end. Connect with each other
during the month, by phone if not in person. Call for just a few minutes to offer
encouragement and reinforce each other’s healing practices. Keep the call or visit
short. Just touching base with someone can be very helpful and up lifting. Be careful to
not become a burden or drain to another group member, however. Be respectful of their
condition, as well as your own needs.
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| Healing
Activities
A support group that incorporates healing practices within the structure of each
meeting can facilitate the many healing methods used by the group members. Several ways
this can be done are the following: reserve a block of time (usually the last half-hour of
the meeting) for healing time. Use this time to listen to tapes, meditate, do relaxation
techniques, healing imagery, therapeutic journal writing, form a prayer circle, or do
breathing exercises. Share your experience with these techniques with others, or invite
guest healers to come and share their work.
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A CFIDS support group should not be just
an "information clearinghouse". Rather, it can be an experience that is
up-lifting, informative, and healing.
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