FM/CFS/ME RESOURCES - Support Group Information

 

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Support Group

SUPPORT GROUP INFORMATION

We all need to know we're not alone in our pain and suffering. Often, the best medicine can be laughter shared between people like "us", people with FM and/or CFS/ME. This section is devoted to information about support groups.

Select from the links below for more information:


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How to Select a Support Group

Support groups are not appropriate for everyone, and some Fibromyalgia and CFSME patients may find that a support group actually adds to their stress rather than relieving it. Most support groups are free, collect voluntary donations, or charge modest membership dues to cover basic expenses (e.g. refreshments at meetings or photocopying costs).

A useful support group should include:

  • Both newcomers and patients who have had CFS for longer periods of time to provide a balance of perspectives for the group.

  • People with whom the CFS patient feels comfortable.

  • Leaders who empathize, gently draw out shy members, and keep others from dominating, and who distill discussion into useful information.

  • A history indicating the group is stable and meeting the needs of its members.

Some support groups may put their own interests before those of the individual patient. Groups that engage in any of the following activities should be avoided:

  • Promise sure cures and quick solutions.
  • Conduct meetings that are mainly "gripe" sessions.
  • Insist that patients reveal private or sensitive information.
  • Demand allegiance to a cult-like, charismatic leader.
  • Charge high fees.
  • Require patients to purchase products.
  • Urge patients to stop prescribed treatment and recommend a single solution to their problem.

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Getting The Most From Support Groups

Support groups have become a fact of life. As our connection to extended families has been stretched and our mobility has found more and more of us trying to establish ourselves in new cities, communities and neighborhoods, support groups are one of the ways we connect with other people and find encouragement, education and resources to help us cope with everyday life.


Finding The Right Group

To find the right support group, you have several avenues. We offer a large database of support groups that meet In-person. We currently have listings for 14 different countries. We also have a rather large listing of groups that meet Online. You can also check with your doctor, local hospital or community medical center. If you city is large enough, there may be a central referral agency or organization that serves as a referral source for support groups. Also, don't be afraid to ask around - ask your friends, colleagues, neighbors - they may be able to steer you in the right direction.


Meet With The Leader

Make contact with the facilitator or leader before you attend your first meeting. By asking questions about the culture of the group, meeting times and space, what the attendance and turnover rate is - you'll be better prepared and it will help you in making the decision about whether you've found the right group or not.

Try to keep an open mind when you attend your first group meeting. The discomfort and nervousness you feel could keep you from being open to the group experience. Try to stay open and "ease into" the experience. Introduce yourself, but don't feel pressured into sharing more than you're ready to. Let yourself absorb the feeling of the group and start to evaluate how the experience feels, while being open to what is going on.

Unless it is a terrible experience and an obviously wrong fit for you, try attending the support group a second and third time before making the decision as to whether it will work for you or not. Similar to the advice about going on a second date before making a snap decision - you're discomfort the first time or your glowingly positive experience may be a fluke and it will take a couple more meetings to get a real feel for the group.


Self-Reflection

It helps if you do some self-reflection about what you need and hope to get from attending a support group and continue to reevaluate your expectations as you continue in the group. Having a solid idea of what your needs are will help you to understand whether the support group is helping you to achieve what you hope to. Also, it will help you to stay in touch with your own personal challenges and goals instead of taking on another group member's or the facilitator's idea of what you should be working on.

Remember the saying, "Don't put all your eggs in one basket?" Well, when you find a support group that clicks for you, you may be tempted to depend on "the group" for all your social and emotional needs. While support groups can be a wonderful place to meet friends, and build a support system for your life, it is still important to try to keep your life balanced with other experiences, family, friends, etc. A good support group can be one element in a healthy, balanced life - but it is best not to expect the support group to be everything.


Conclusion

The support group is a positive example of the human's adaptation to modern life, but, like most things in life - you only get out of it what you put in. Remember to stay open and try to stay true to your own unique self and your own unique situation. Becoming involved in a support group can truly be a life-enhancing experience.

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