Support groups, also called “special interest groups” or SIG, are an integral part of many health organizations and a crucial foundation for those coping with illness.
Support groups allow those who share a common diagnosis to come together, share ideas, coping tips, experiences and most importantly, to exchange emotional support. Most support groups are usually facilitated by Leaders who have personal experience in the disease and became advocates for others. The primary goal of most groups is to ensure that no one living with the disease or condition that the group serves ever has to feel alone again.
While providing important emotional support, support groups are more than just a safety net for the patient. Indeed, they can even improve the physical health and wellness of participants. For example, according to Jack Dolcourt, MD, “support groups have traditionally helped fill the void between the medical system and the daily grind of the everyday world. Support groups generally function to help patients cope, but clearly [they] do more than make patients feel good.” Dr. Dolcourt furthers expounds on the role of these special interest groups, noting that “they can serve as educators for new patients and the community, and [can] serve as a clearing house for disseminating news of important advancements or therapiesÃ¢Â?Â¦.support groups take on the additional roles of expert and advocate.”
Further evidence of the importance of support groups readily exists in the scientific arena as well. For example, one investigation led by researchers at Stanford University evaluated 86 women with breast cancer that had already metastasized. 50 of the women attended weekly support group meetings for one year or more in addition to receiving standard medical treatment, while 36 women received only medical intervention. Study results revealed that the women in the breast cancer support groups reported feeling “less anxious, less depressed, and less bothered by pain” versus those who had not participated in a SIG. Researchers later discovered even more remarkable findings: the women in the support groups survived an average of 18 months longer than the others. 4 years after the study began, one-third of the participants in the support groups were still alive, while all 36 of the other women had died.
Another study detailing the importance of support groups specifically for those coping with the painful disease Endometriosis was published in the Journal of Reproductive Medicine in March 1998 [J. Reprod. Med. 1998 Mar;43(3 Suppl):331-4]. Authors Whitney et. al. investigated the social support experience of 46 women in an online Endometriosis support group. They concluded that “in general, the women with Endometriosis valued connections to other women with Endometriosis.” To that end, organizations like the Endometriosis Research Center (http://www.endocenter.org) have highlighted the need for such support of patients in their disease awareness efforts. As a result of the ERC’s legislative awareness campaign, several official resolutions “recognizing the need for better support of patients with Endometriosis” have come to pass. The ERC, founded in 1997, was quick to identify the drastic need for mutual sharing those with the disease felt. In 1998 the organization founded an online group for those interested in the disease, which quickly grew to become the Internet’s largest electronic Endometriosis support group. Over 3,000 members from around the world now participate in the group, with hundreds more participating in location and age-specific groups (see http://www.endocenter.org/supportgroups.htm for details and access).
If you or someone you love suffers from a medical condition and you would like to join a support group, your best starting point is to check the website of a sponsoring foundation. For example, those interested in joining a breast cancer support group might be interested in seeing what the Susan G. Komen Foundation can offer (http://www.komen.org). Patients can also search for “umbrella sites,” which offer access to several different groups, such as http://www.breastcancer.org/faq_support.html. Men should not feel left out of the support experience: several groups exist for male health concerns as well. One example is http://www.ustoo.com, the Prostate Cancer Education & Support Group.
The majority of support groups are full of legitimate patients who truly wish to share in a unified bond with others who understand. However, patients still need to be wary of the occasional fraudulent “patient,” who joins the group and immediately begins regaling fellow members with fantastically tragic tales. Sooner rather than later, fellow members begin realizing the stories are just that: tales. Some experts refer to this as ”Munchausen by Internet”. Named for the German Baron who became famous for his tall tales, the disorder is characterized by “patients” who willfully fake or describe their “illness” solely to command attention. Marc D. Feldman, MD, an expert in the disorder who hails from the University of Alabama at Birmingham’s Center for Psychiatric Medicine, offers some clues on how to spot such frauds:
Ã¢Â?Â¢ Look for fantastic personal claims, which are later disproved or contradicted.
Ã¢Â?Â¢ The “patient” often describes worsening of an illness, followed by a miraculous recovery.
Ã¢Â?Â¢ The “patient” gives light-hearted descriptions of serious medical problems.
Ã¢Â?Â¢ The “patient” may suddenly bring in “supporting players” when their audience’s attention wanes or they are confronted (for example, “now my mother is terminally ill!”).
“Munchausen members” notwithstanding, there is no question that the support experience of those sharing a common bond through illness can be highly beneficial and even help lead to better care, increased coping mechanisms, and an overall improved outlook. Such groups can also offer physician referrals and help one another to weed through inaccuracies in the vast medical information that exists on the web and in the literature, as well launch collaborative campaigns for disease awareness. The Internet has opened new pathways for those seeking to become part of the support group experience. No longer confined to monthly in-person meetings at the local hospital or library, support groups for virtually every condition are thriving on the web. Patients can now connect with others from across the globe to share not only mutual support, but vital educational information as well – anytime, day or night, from the comforts of home.
For listings of various medical support groups, refer to some of the following starting points below:
 data by the Harvard Health Letter, courtesy of the United Ostomy Association: http://www.ostomyok.org/newsletter/news9905c.html
[3, 4] http://www.healthyplace.com/site/article_faking.asp