Neuroanthropology

By Katie, Laura, Matt, and Claire

Diane was diagnosed with HIV at eight months old. She was infected through her mother, who was not aware that Diane’s father, her husband at the time, had HIV. He left before Diane’s mother found out that she had HIV and that she had passed it on to her newborn daughter.

Infected with HIV for her entire life, Diane “acts like she doesn’t have it” and “tries to go on with her life” even though she thinks about it everyday.

HIV has had a huge impact throughout Diane’s (a pseudonym) twenty-one years of life. One summer she was given just months to live, and her family, doubtful she would live until December, celebrated Christmas in July. She has survived several health scares, and although her health is currently not great, it is improving as her new medication begins to bring her viral load under control.

The Challenges of Being HIV-Positive… and a Woman

HIV-positive women cope with their disease in ways that are strikingly different from HIV-positive men. Women’s roles as caregivers, mothers, wives, and daughters make their experiences with HIV unique. These roles shape how much they are willing to deal with the disease on a daily basis as many women put the needs of their children and families before their own. Furthermore, their identities as caregivers may conflict with their identities as recipients of care that their HIV status necessitates. Consequently, these women, many of whom are in difficult socioeconomic situations, may not seek the support they need.

To help these women, last year a group of students helped to establish a much-needed HIV/AIDS women’s support group in our Midwestern city (see their post, Just A Place to Talk: Women & HIV/AIDS). It was a success initially. However, the student who helped facilitate the support group moved away this summer, and the support group lost its impetus.

This year our community-based research project explored why women stopped attending the support group, women’s interest in participating in a new support group, and how to develop a support network that addresses the many needs of HIV-positive women. The two most important lessons we learned this semester include the importance of emotional support and the value of resources, such as transportation and childcare, that enable these women to care for themselves and their families while living with HIV.

Seeking Solidarity and Support

Several women expressed a desire to learn from others who are willing to share their experiences with HIV. They think that sharing their stories with other HIV-positive women will lessen feelings of isolation and better equip these women to handle the burdens of the illness. As Joyce, who has been HIV-positive for twelve years, reported, she is interested in the group because she “wants to feel supported.”

Continue reading “Finding a Voice: Establishing a Support Network for HIV+ Women”