CFS is foremost a physical disease. However, living with CFS requires adapting to an entirely new way of life. People with CFIDS often feel alone with their disease and with the everyday struggles this illness brings to their lives and the lives of family members and friends. Support groups ease the transition for the newly diagnosed patient and provide essential emotional support in the ongoing struggle with the disease. Knowing that others share this journey offers comfort and reassurance.
The major objective of a CFS support group is to provide a warm and caring environment where CFS patients can share their experiences and methods of living with a chronic illness. Sometimes the best words a CFS patient can hear is “I know how you feel” or “I understand” from someone who really does. Most CFS patients would agree that the greatest benefits a CFS support group offers are confirmation and validation of the illness and the assurance that they are not alone. Additionally, a support group can give members a greater sense of self-esteem and empowerment as they learn to cope and adapt to life with a chronic illness.
A state-by-state listing can be found at www.immunesupport.com/supportgroups/. Please remember many of the support groups are run by patients and it may take a few days for you to get a response.
There are several online support resources that may be helpful to you as well:
For additional information on support groups, please visit the following areas on the Association’s Web site:
- Support group leaders make a difference in the daily lives of CFS patients. Start a CFS Support Group in your area.
- Choose support group activities and projects that best serve your members.
- Grassroots advocacy is crucial to making progress! Learn how your support group can become involved in public policy efforts of the Association.
- Coordinate local CFS Awareness Day activities.