Back when she was diagnosed with HIV, in May 1998, Precious Jackson Jones slid into depression. “It was very difficult because I had no one to talk to,” she says. After two years of searching for the right peer support, she came across Women Alive, a group for HIV positive women in Los Angeles. The moment she walked into the warm, intimate meeting room, she felt safe and at home.
Positive people have been gathering casually to share their stories since the epidemic began; today, there are hundreds of more structured HIV support groups across the country. They provide hope, empowerment and camaraderie to people who might otherwise feel isolated.
“I walked into [the group] and thought ‘Wow, I’ve finally made it,’” says Jones, 34. “It made me feel good to know I’m not the only person in this world with HIV.”
Couldn’t a therapist provide the same mental and emotional aid? Deborah Jones, PhD, a psychology professor at Barry University in Miami, Florida, says support groups supply someone to talk with, not just to. The empowerment comes from seeing how your experiences can help group members negotiate theirs. Alberto Alonso, a licensed clinical social worker at New York City’s Lower East Side Harm Reduction Center, says his clinic often prescribes groups rather than antidepressants for HIV-related depression (talk to your own doc for additional guidance). Cultural similarities among group members help them help one another, he adds. And most groups are free, while individual therapy routinely costs more than $100 per hour.
Jones says she prefers her group to individual therapy because she entrusts her most personal stories to people who also have HIV. In the six years she has attended Women Alive, Jones has been able to share the issues that concern her the most—like her fear of dying alone or never having a relationship again.
A support group is more than a bunch of friends sitting around shooting the breeze. Groups are structured to be effective for everyone. At Women Alive, new members are brought up to speed during outside chats before joining the group, so that sessions don’t become repetitive. The meetings, held twice a month, usually begin with an hourlong themed discussion on topics from relationships to stress management, then proceed to an hour of open discussion. The group employs the standard rules of support groups, such as avoiding side conversations and maintaining confidentiality.
For Jones, joining the group was just the beginning. She is now a peer advocate and group leader at Women Alive. “People check in, and for two hours, [we] talk about how the week was and what [our] goals are,” she says. “This kind of support helps people stay alive.”
A clinic counselor, AIDS service organization or health care professional can point you toward a support group. You can also:
Go Online: Some HIV websites offer chat groups. Try AIDSmeds community forums (www.aidsmeds.com).
Do It Yourself. Gather a few friends and start talking. For guidance, explore the Well Project’s how-to guide (www.thewellproject.org/tools/how-to_guides).
Also handy: The Support Group Manual, by Harriet Sarnoff Schiff (Penguin; $13).