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.”

Four of the eleven women we interviewed had attended at least one of last year’s support group meetings, but they stopped going to the meetings because of consistently low attendance.

Shannon, who was diagnosed with HIV seventeen years ago, believes “getting women to come out and talk about their condition” is the most difficult part of organizing a support group; however, she says she would be more willing to come to the meetings “if she knew that there were going to be people there each week.”

Margaret, who has been HIV-positive for twenty years, attended several of the women’s support group meetings last year. During the interview, she seemed a little frustrated that some of the women stopped showing up, but she understands the obstacles women face in getting to weekly support group meetings: “I know people have things to do and things come up, but people attending is the biggest thing. It usually starts out pretty good but then just dies off.”

Increasing Attendance

So how should we go about addressing the attendance issue? How do we get women to come to the support group meetings each week? Women said that they would be more likely to return to the support group each week if they were learning new things, feeling supported, and helping other women deal with the challenges of HIV/AIDS.

“Fellowship, friendships, and a chance to learn how the disease is for others” are the major things that Adrienne, who has attended three different support groups, would like out of a support group.

Sue is looking for a group of “nice women who are willing to come, be supportive, and respect someone else’s privacy.” Sue also said she would like the support group “to make her feel better about her illness, like she is not the only one with HIV.”

Many HIV-positive women, like Sue, feel alone and uncomfortable talking about their illness. Most do not even tell their family or close friends about their status. One woman disclosed that she has gone a year without interacting with another HIV-positive woman. Consequently, it can be very difficult for women to handle all of the challenges they face, especially if they feel isolated and depressed as a result of their illness.

A support group, however, enables women to share their stories and to understand that they are not alone in their struggle. They can cultivate genuine friendships and establish an intimate support network that can help them overcome obstacles associated with HIV.

Kara, who contracted HIV from her then drug-abusing husband nearly twenty years ago, has definitely felt her fair share of isolation. She would like to get involved in a support group in order to share her story and help other women deal with HIV. Kara told us, “I would come to the meetings each week knowing that I could help someone.”

Some women, however, are either not comfortable sharing their HIV status with others or do not want to discuss their illness because “they are feeling pretty good.” Margaret, who has been blind since suffering from severe complications of HIV nearly fifteen years ago, has been undetectable for ten years and says, “Now that the virus is undetectable, it is not really a topic of discussion.”

A student involved in last year’s support group talked with us about encouraging women like Margaret to come to support group meetings and share their stories of hope with women who are struggling with a recent diagnosis, a health scare, or feelings of loneliness and despair. It is important that these women know how much they can impact the lives of other HIV-positive women who are seeking a safe space to voice their concerns about HIV and to find encouragement and solace in the experiences of others.

A Support Network

After talking to eleven HIV-positive women, we realized they have a variety of emotional and financial needs. Many HIV-positive women are looking for more than just a support group. They need a support network.

A support network will provide women with the resources needed to live their daily lives as well as to fight the disease. In addition to friendships with other HIV-positive women, this multi-faceted support system will provide women with everything from basic necessities, such as toiletries and food, to childcare and reliable transportation to healthcare appointments.

Many HIV-positive women are mothers and need help with childcare so they can visit the doctor or participate in a support group. Some women mentioned that more resources should be tailored to the specific needs of HIV-positive single mothers.

Adrienne, who was diagnosed with HIV eighteen years ago, suggested that support for HIV-positive women should be more comprehensive and aim to “help the family as a whole” as HIV affects not just individuals but entire families.

“I could use support in the form of childcare and money for utilities but any type of support is welcome. Anything can help,” says Sue, a young mother of three children under the age of seven who has been HIV-positive for four years.

Many women are unemployed and must get by on a fixed monthly income. They also do not have access to reliable transportation. These problems are barriers to the support they might receive if they had the money, time, and resources to seek it out. In consideration of the obstacles these women face, we decided to explore their needs and determine how best to support local HIV-positive women.

With a support network in place, these women could better confront their disease and make it through each day. Beyond the basic needs of food, transportation to doctor’s appointments, and occasional childcare, these women also desire emotional support. Some keep a positive attitude like Adrienne, who insists that “the disease won’t beat me”; however, many feel depressed and isolated from others.

Most women claim they are not treated differently because of their HIV status simply because they do not tell anyone about their disease. These women are especially in need of a support group to minimize mental health risks associated with hiding a significant part of their lives from others. Improving the support network for these women in terms of monetary and emotional needs decreases their risks of mental illnesses, such as depression, that stem from their HIV-positive status.

Women, particularly young women like Diane and Sue, are a demographic not often associated with HIV. As a result, support services often do not directly address their needs or provide the appropriate type of care. Some are ashamed of their diagnosis, some are fearful of what others will think if they find out about their HIV status, and others are concerned about opportunistic infections and other complications of HIV.

Whatever their concerns may be, all HIV-positive women are in need of additional resources and improved support networks to face their illness and its many challenges. Women, burdened with their responsibilities as daughters, wives, and mothers, now more than ever, need strong support networks behind them.

Further Reading

World AIDS Day Official Website

AVERT: Averting HIV and AIDS

AIDS.gov: United States Department of Health and Human Services

Pittiglio, L. and E. Hough (2009). Coping with HIV: Perspectives of Mothers. Journal of the Association of Nurses in AIDS Care 20(3):184-92.

Bova, C. et al. (2008) Improving Women’s Adjustment to HIV Infection: Results of the Positive Life Skills Workshop Project. Journal of the Association of Nurses in AIDS Care 19(1):58-65.