Support Groups: Tools for Living Well

Early in the AIDS epidemic in the U.S., before there were prescription drugs to fight HIV, even before a test was available to confirm the presence of HIV in the bloodstream, people suffering with AIDS-related symptoms fought for their well-being through participation in support groups. Now we have a host of FDA-approved medications that are used against HIV, yet the importance of support groups for people living with HIV, their families and friends remains just as critical as it was in the early 1980s.

At every THRIVE! Weekend that AIDS Survival Project (ASP) hosts, participants meet four times over the course of the weekend in small support groups. Survival News annually dedicates several pages to a current listing of support groups (January/February 2004). One of the most common referrals given by ASP peer counselors is to support groups. People with new HIV diagnoses, people living with HIV for over a decade, HIV-positive people in new relationships, new to town, on new and complicated medication regimens -- all these people are encouraged to consider going to a support group. With high-tech pharmaceutical approaches to managing HIV available, why are support groups still essential?

Support groups for people meeting the challenges of living with HIV provide social, educational and medical benefits. Groups can usually be accessed at no charge and can be attended in person, online or occasionally by telephone conference, making them available to most people. Support groups are often described as being "open" or "closed." Open groups may be conducted on a drop-in basis without a need to commit to a screening process or to a particular number of visits. A closed group is one in which a particular group of people meets together for a specified length of time without adding new members. There may be a screening process or the requirement of a referral to participate in this type of support group.

Groups may be developed for people who have certain characteristics in common; for instance, groups for HIV-positive women, people of color, children, teens/adolescents, older adults, prisoners or people with specific sexual orientation or identity. Other groups are formed around particular concerns. Examples of these groups include support for serodiscordant couples (where one person is HIV-positive and the other is HIV-negative), long-term survivors, newly diagnosed individuals and HIV-positive people in recovery from drugs and alcohol. Recently, we have heard more about groups that focus on the needs of people managing coinfection (for instance, HIV and Hepatitis C) or using Fuzeon (an HIV medication administered by injection).

Support groups reduce isolation, physically and emotionally, while enhancing empowerment. For many people living with HIV, a support group is the first place where they acknowledge to another person that they are infected and where they come face-to-face with other people who are positive. Meeting other people who share the same concerns, fears and medical issues can reduce the power of HIV-related stigma. This is just as essential now as it was in the early 1980s and it is just as crucial in rural Mississippi as it is in New York City and Swaziland. Wherever HIV has spread, stigma and isolation have helped it flourish. Issues that seem unique may begin to be normalized when they are identified as common to a larger group. It is often simply a relief to see that other people have been through the same thing and devised ways to meet challenges.

In support groups, people learn new roles as they give and receive information and express feelings. Relationships that form within a support group provide opportunities to explore new roles, communication styles and coping strategies. Often, people discuss concerns in support groups that they fear would burden family and friends. The group environment can be a safe place to begin to process these issues.

Not surprisingly, romantic and sexual relationships are primary topics in many support groups. Some groups are formed specifically to create a social venue where people living with HIV can meet people to date. Other groups have ground rules that expressly caution against romantic or sexual relationships within the group. Regardless of the rules of the group, discussions about finding partners, disclosure and risk reduction techniques are topics that are commonly revisited.

An enormous amount of education about HIV takes place in support groups. People learn from each other how to select and communicate with medical providers, how to navigate social and medical services, how to find clinical trials and how to deal with medication side effects. Discussions about safer sex and other transmission reduction techniques can take place with more candor. Beliefs about prevention and HIV can be explored and evaluated. Often, the medical knowledge of people in the group allows other members to realize that they also hold the power to become more informed medical consumers and be more active in the management of their own health.

Medication regimens for controlling HIV can be complicated, and taking medication according to schedule can be difficult for a multitude of reasons. In support groups, adherence issues are often explored as members share concerns about maintaining their confidentiality while taking their medications around other people, the role of recreational drugs in compromising effective treatment and making self-care a priority.

Living well with HIV usually requires behavior changes that are challenging at best. In a group, people can examine what behaviors they want to change, how ready they are to initiate change, develop strategies for change and receive reinforcement and encouragement from the group.

Many people comment that, above all, their participation in a support group gave them hope. As the Web site for The Wellness Community, an online cancer support group, says, "you will find that there is always hope, even if what you are hoping for changes." People often identify someone in their support group as a role model in the way they handle HIV in their life -- or they may be grateful when they hear other life stories that they feel are much more traumatic than their own. What is hoped for and hoped to be avoided can be powerful motivations for behavior change.

The bottom line is that nothing provides social support, education and personal empowerment quite like being in a support group. Joe G., a long-time AIDS Survival Project associate who was diagnosed in 1987, says that support groups still inspire him. His personal experience facilitating small groups at THRIVE! Weekend has been that in every group, he has at least one experience that strengthens him and enriches his life. Antoniette, who has participated in groups for years, says that within a group, she always finds an opportunity to learn, to express her feelings and to share as well as to receive, so she keeps going back for more. The ability of human beings to compassionately meet with others to explore similar concerns may be its own form of medicine -- and one that is obtainable without a prescription!

How to Find a Support Group

Online-challenged? Call (404) 874-7926 and ask to have a Support Group List mailed to you.