By Christine, Dorian, Kristine, Tom & Vanessa

Nine months ago, Maria birthed a healthy baby girl. Just two days later, the joyous ecstasy of new life quickly led to a striking reality: Maria’s husband was diagnosed with HIV.

“He thought I was going to leave him, but of course I wouldn’t. We’re in this together.” At the time, she didn’t know quite how personal her statement would become. Just three months later Maria and her newborn daughter were also diagnosed with HIV.

“Initially I was able to handle it in the moment, but then it hits. In time, it’s become much more difficult to deal with.”

Maria certainly feels stigmatized and has refrained from telling her other children. In this Midwestern town, the needs of Maria (a pseudonym) and other women with HIV are ripe with concern and lack of viable opportunity. She told us, “What I, and other women need, is just a place to talk.”

Currently there are HIV/AIDS support groups offered locally through a community center. Our community-based student project, focused on understanding and empowering women suffering from HIV/AIDS locally, brought us to these groups. What we found was a support group for homosexual men that did not offer the support women need.

Through research concerning sexual orientation and HIV/AIDS, we discovered that homosexual men and heterosexual women have different coping mechanisms and symptoms. Women experience more illness as a result to their HIV/AIDS status than homosexual men. They also are more likely to need social support to deal with the pain and fear of being HIV/AIDS positive. (Mosack 2009:137) Although the group that exists can be literally defined as a place to talk, it may not be the best place to be heard and understood as a woman.

Those who are infected with HIV – men and women alike – bear the burden of the stigma, yet the nature of the stigma is different for each group. Homosexual men have been painting the face of AIDS since its discovery in 1981, and those who aren’t infected struggle to see women as part of this picture. It’s common for homosexual, HIV-positive men to have contracted it through unsafe sex with an infected partner. Heterosexual women, on the other hand, often contract HIV from one of a number of sources: an unfaithful spouse, rape, or drug abuse. Because their experiences are so different, men and women struggle to support each other.

Jane, a woman who currently attends a substance support group for HIV/AIDS positive people, told us in a private interview, “The support group coordinator asked me if I would be willing to share what we had talked about alone… and of course I said no…they wouldn’t understand”. The coordinator was referring to her past that included circumstances of domestic abuse. Rocking back and forth in her chair and twisting her fingers in her palm she told us, “you know…you just can’t talk to men about… you know… girl things and girl problems”

Women are not comfortable sharing their experiences in the current group dominated by gay men. They want to relate to women like themselves, women that deal with the same issues, experience similar struggles and want the same things.

Maria, a new HIV patient, could find solace in the companionship of a woman like Jane, who has been living with the virus for ten years. Jane attributes her infection to “the lifestyle [she] was living” – a lifestyle not only haunted by domestic abuse, but loaded with unsafe sex, drug abuse, and financial issues – until she was diagnosed in 1998.

Both Jane and Maria would find inspiration from Sharon, whose drug-abusing husband infected her with HIV before he died in 1991. As a consequence of her weakened immune system, she contracted cytomegalovirus and lost her vision. Now, with a steady job and a house full of grandchildren, she craves an outlet for her emotions. She wants to talk about her boyfriend, her family, her future. She needs the support of women like Jane and Maria, and they need her.

These women’s stories are just a few examples of the hardships faced by women with HIV/AIDS. Within the community and elsewhere there is a large population of women affected by HIV/AIDS and the numbers are on the rise. Women presently account for one fourth of all new HIV/AIDS diagnoses (CDC, 2008.) What we found here is a microcosm of this national transition. As the head of a local AIDS assist organization told us, “Women are the new arena.” They are part of the new face of AIDS.

Although there are support systems in place in the community, there is no program designed to specifically address women’s needs. Their desire for a place to talk has not been recognized. Our research intersected with this inequality of services, something we are now helping local organizations to address.

If women can’t find support in the AIDS community that currently exists, they can empower themselves through solidarity. They can create their own community: a support group with their desires molding its design.

Within a safe, sympathetic environment, they will be able to create their own support group in which they can speak freely about, “girl things and girl problems”. It will welcome conversations about relationships with friends, family, and with themselves. In doing so women will be able to join together in a struggle to find a place in the realm of HIV/AIDS that hasn’t existed before. It will be a place in which they can discuss women’s health issues and concerns. It will be a group run by women, for women, a place to call their own.

Sharon can reconcile her sense of betrayal stemming from the idea that her husband’s illegal habit infected her. She will be able to do so with a whole community behind her. Jane can learn skills that will empower her to effectively communicate with her family, through the example of the women she meets. Thus recognizing her family’s concern yet defending herself against the stigma. And Maria can talk about the guilt of infecting her baby while feeling secure in the knowledge that her baby will have adequate care while seeking support. A support group will help these women by not only allowing them to open up and get advice from the women in the group, but by educating them, body, mind, and spirit.

Women need a place to talk so that they can cope with the reality that they are becoming a part of the new face of AIDS. Young women represent the real new face of AIDS, a face that is not always as visible as it needs to be. “I’m used to putting on masks,” says Maria. “I have so many different masks that sometimes I forget which one I’m wearing.” A women’s support group would allow Maria and others to unmask the true face of AIDS, a beautiful and vibrant face that deserves to be revealed and recognized.

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We want to give a special thanks to our community partner who introduced us to the wonderful women we interviewed and especially to the women who came out from behind their masks to speak to us.

Image: Femme Facade, by Peggy Bonnett Begnaud

References & Further Reading:

Banzhaf , Chris, Cynthia, Marion, and Kim Christensen. 1992. La Mujer, el Sida, y el Activismo. New York, NY: South End

Centers for Disease Control and Prevention. 2008. HIV/AIDS Among Women.

Website: HIV/AIDS Positive Stories.

Mosack, Katie E. 2009. Influence of Coping, Social Support, and Depression on Subjective Health Status Among HIV-Positive Adults with Different Sexual Identities. Journal of Behavioral Medicine 34(4): 133-144