Dealing with Stigma, Obstacles to Care, and Getting the Support They Need
The gay men in Chicagoan Alice Rodriguez' HIV+ support group gave her everything they could -- support, encouragement, affection, the motivation to be a fighter. So what was missing? Rodriguez, who was often the only woman at the group's meetings, puts it succinctly.
"What could I share with a gay man about my vaginal infection?" she says. "He's not gonna say, 'I get it too, sugar, and this is what I take for it -- don't worry, you're going to be okay.'"
While the group encouraged Rodriguez to express her feelings, she was frustrated that she could not exchange information about HIV+ women's issues with other attendees. She felt isolated by her HIV status, even though she was living in a large city, and she also felt frightened and ashamed.
"I didn't know many women who were HIV+," she says. Her eyes were opened when the organization that operated her support group began a separate group for women. "That's where I got all of my information," she says.
Rodriguez was diagnosed with HIV nine years ago, which might lead one to speculate that experiences like hers were confined to some sort of "dark age" that has long since ended. But a vast number of HIV+ women today have similar feelings of shame, fear and isolation, even though there are relatively many more options available to them.
Like other disenfranchised communities, women urgently need to work together to shore up their defenses against the AIDS epidemic. But like these other groups, women face a complicated tangle of inter-related problems -- after all, that's why they're disenfranchised in the first place.
The Stigma of HIVMany HIV-positive women fear "coming out" to friends, family and colleagues about their HIV status because nobody in their circles is openly HIV-positive. Without any previous efforts to counter the myths about HIV, these women are understandably afraid of what people will think of them. Despite years of efforts to educate the public, the specter of drug use and prostitution encourages many people to look down on women with HIV.
"Jessica," who was diagnosed HIV+ in 1989, is only out to her family and closest friends. "I think that people who aren't educated about AIDS would treat me like a leper -- that's why I don't tell them," she says.
Since Jessica went on disability from her retail sales job, she has received dinner invitations from former co-workers. "I wonder whether they would call if they knew," she says. "I've been in the hospital six times recently -- if I was still at work, I'd tell them I had cancer."
Cynthia Tucker, Director of Prevention at Chicago Women's AIDS Project, sees women go to great lengths to hide their HIV status because they fear being stigmatized. "Some of them are not out to the people they live with -- they're hiding their meds in the refrigerator," she says. "Think about the mental health impact of that."
In Tucker's experience, women in the African-American and Latino communities -- which have been disproportionately hit by the AIDS epidemic -- find it particularly difficult to disclose their HIV status. (See "American Women and HIV: A Statistical Snapshot," below.)
"Women feel judged," she says. "The question, 'How did she get it?' needs to be taken away. It doesn't matter how you got it."
Rodriguez' experience is a textbook case of this problem. When she went in to get tested at a Chicago Department of Public Health site nine years ago, "They asked a lot of personal questions that made me feel like I did something wrong." Two weeks later, the counselor who informed Rodriguez of the positive test result also informed her that she was going to die. "I was so devastated, and so angry about the way I was being judged, that I went out and continued using [heroin]."
Since then, many urban HIV testing facilities have made improvements in their efforts to deal with clients nonjudgmentally. Yet the stigma remains, continuing to color the response of the medical and public health communities and -- to an even greater extent -- American society at large.
Rodriguez brings home the gravity of this problem when she points out that HIV+ women aren't merely afraid of what people will think. "A lot of women keep silent because they're afraid that their children will be taken away or that someone will come burn down their house," she says.
Obstacles to Receiving CareFirst and foremost, it should be noted that the deck is stacked against HIV+ women in many of the same ways that it was already stacked against women before the emergence of the AIDS epidemic.
"In general, women do not get health care on the same level as men," says Tucker. This disparity, of course, takes a greater toll on women who are HIV+ than women who are healthy.
The first manifestations of the disparity can occur before a woman even knows that she is HIV+. Tucker expresses concern about doctors and clinic staff not realizing that women who exhibit certain conditions, such as chronic yeast infections, may be infected with HIV. It is not uncommon for a HIV+ woman to tell the story of how a health care provider initially overlooked symptoms that should have prompted a recommendation for an HIV test.
Dr. Pat Garcia, Assistant Professor of OBGYN at Northwestern University Medical School and Director of Northwestern's HIV Women's Program, says, "The general medical community continues to ignore the fact that HIV is a threat to women. It remains an unrecognized disease in too many women for far too long."
Rodriguez, who has spent countless volunteer hours working with HIV+ people and giving public addresses about HIV and AIDS, agrees with other AIDS activists who say that stereotypes about women's roles prevent people from recognizing the nature of the threat.
"Women are supposed to be the caretakers, to hold the family together," she says. "In my culture, that's how we were raised." (Rodriguez is Puerto Rican.) "In all cultures," she bluntly adds, "women are not supposed to get sick."
A long list of more tangible factors also impair women's' ability to properly address their HIV-related needs. Melissa Sweeney's observations at Project VIDA in Chicago provide a taste of what HIV+ women are experiencing all over the United States. As the Coordinator for Project VIDA's Complementary Therapies program, Sweeney works with clients who receive free acupuncture, massage and other treatments from experienced practitioners at two weekly clinic sessions at the organization. The client population includes a diverse range of male and female Caucasians, Latinos and African-Americans.
Many of the women in her program, Sweeney says, struggle with multiple challenges. It is difficult for mothers to find affordable childcare. Transportation is an issue for low-income women. Also, "I've had one or two women who were infected by their husbands, and who had difficulty coming in because their husbands were ashamed -- like, 'I don't want anyone to know that I did this to you.' "
Sweeney speculates that some women who are reluctant to return to Project VIDA may feel overcome by timidity. She has the impression that it is important for her to give them a warm, personal welcome on their first visit. "A lot depends on who talks to them, and on how comfortable we make them feel the first time they are here."
Her experiences with Latina immigrants provide instructive case studies. "Non-English speaking Latinas are more cautious. Everything around them is new," she says. This population, even more so than the others, can be suspicious of Project VIDA's offer of free services. "They feel like, 'If you're helping me, what are you going to want in return?' "
Fielding questions from Latina immigrants has made Sweeney aware of how little information is reaching them.
"A lot really don't understand modes of transmission," she says. "They ask if they can give HIV to their families." Many also ask her fundamental questions about what the disease is doing to their bodies -- questions so fundamental, in fact, that one wonders why their doctors aren't educating them.
Sweeney, who is fluent in both English and Spanish, knows why this communication isn't taking place in some situations: the language barrier. "I have clients who call me from the doctor's office, asking, 'What is he saying? How do I take these pills?' For a lot of the clients from Spanish-speaking families, the case manager and I are the only bilingual people they know."
While this may be the most literal communication gap, it certainly isn't the only one compounding women's struggles. In fact, it serves as an apt metaphor for the communication problems that can occur even among people who speak the same language.
Tucker expresses concern about clients who describe having very brief visits with their doctors. "If there's not time to talk, then a woman's whole situation is not being assessed," she says.
Garcia calls for HIV+ women's doctors to try to understand the family and social context in which each woman lives. "You're not just treating a woman. You may be treating a head of household, a mother, a partner of somebody who is abusing her." (Domestic violence is reported to be a big problem among HIV+ women.)
One important benefit of taking time to communicate about each individual situation, Garcia says, is that doctors can much better position themselves to help patients with adherence to treatment regimens. Non-adherence (not taking medications properly, which can have extremely dangerous consequences) is a tremendous problem among HIV+ women, doubtlessly in part because of the many obstacles that they are already facing.
Rodriguez, who works as a patient advocate at a medical clinic dealing with a large number of HIV+ clients, sees an urgent need for better communication between women and their doctors. "So many women don't ask questions," she says. "I've run across HIV+ Hispanic women who will not say a word. They tell me that they don't know if they should keep taking [medications], but they won't talk to their doctors about it."
Inadequate medical care is obviously the most dangerous consequence of poor communication, but it certainly isn't the only one. Not having the opportunity to make informed decisions about their health care often leaves people despairing about their lack of control. As Rodriguez puts it, "You need to learn more about this disease so you can maintain some kind of sanity."
Her words are apt -- mental-emotional well-being is a tremendous challenge for everyone with HIV. Developing a good support system is crucial, and for many women, a necessary component of a good support system is the presence of other HIV+ women.
The Importance of SupportRodriguez' account of attending support groups comprised largely of gay men illustrates more than one point. She felt so starved for support -- as many women today still feel -- that she was willing to seek it out from a group of people who were very different from her. But while she was grateful for the men's acceptance, she found that there were limitations to what they could offer women.
Some HIV+ women could not even have benefited as much as Rodriguez did from the experience. Brenda Lein heads the Information and Advocacy Department at San Francisco's Project Inform, a large HIV services organization. Lein offers her own personal experiences as an example of this dynamic.
"In the early days of the epidemic, when most of the mobilization was happening in gay male communities, you essentially had to find a way to feel comfortable within a gay male environment if you wanted support. It doesn't necessarily welcome and address the needs of women. It can be intimidating."
Lein hastens to say that she is not accusing the HIV+ gay men of intentionally excluding her, adding, "I think the gay male community has done beautiful work. It's just an obstacle that for myself was demoralizing many times."
Rev. Brenda Griffin's support group for HIV+ women provides further evidence of the need to bring HIV+ women together to build community. The group that Griffin has facilitated for three years is offered by AIDS Pastoral Care Network, a Chicago organization.
For this writer's benefit, Griffin and five group members gathered for an unofficial meeting at which they discussed some of the issues that crowd the agenda at regular sessions. In spite of the writer's presence, they appeared to be comfortable speaking directly about sexual relationships, depression, and other sensitive issues.
The women who gathered knew each other well, and their regard for each other was highly evident. They moved easily from small talk at the beginning of the session into an emotional discussion of one woman's struggle to have a good relationship with her HIV negative boyfriend.
"Waver O'," as she identified herself for Positively Aware, began by telling the group about recent painful manifestations of a chronic kidney problem. "Me and the man, we've been doing sexual things, girl," she said, explaining candidly how various forms of sexual contact can invite the type of infection that may have triggered the kidney problem.
"Since then, we've been staying away from the whole arena below the navel," she announced archly, eliciting sympathetic laughter. Then she got to what she identified as the larger problem. "I haven't had any trouble with my kidneys for eight years, and all of a sudden I get with 'Sweet E' and my stuff's messin' up," she said.
Waver sensed that her fears were tainting her relationship with her boyfriend, even though it was impossible to know the source of the current kidney ailment.
It wasn't just fear of a sexually-related urinary tract infection that was troubling Waver, who had told the group in the past about her boyfriend's many wonderful qualities. "I never understood 'til now, but I feel like poison for the first time in my life," she said to the others. "I can't feel complete intimacy with an HIV negative man."
"I'm with you, Waver -- this is what I was telling you about last week," said another woman, "Amy." "It's not just about using a barrier. It's about how it makes you feel as a human being."
"My husband is negative, and we're going through the same thing right now," chimed in Martha Carol Barton, a participant who preferred to be identified by her real name.
Waver wasn't finished with her revelations. "Listen, y'all -- he asked me to marry him," she said. "If it was my son doing that, I'd be saying, 'What in hell is wrong with you?'"
The other women took the news in stride. "My husband's response is, 'I married her for better or worse, life or death,'" Martha countered.
Griffin, who generally maintains an understated presence at meetings, encouraging the women to look to each other for support, entered the conversation for the first time. "Waver, there's an underlying piece that I want to work with you on," she said. Referring to Waver's previous expressions of spiritual faith, she suggested that Waver consider accepting her boy friend as a blessing sent from the Creator.
"I believe in God, and I know he sent this as a gift," Waver responded. "But I need to feel peace with myself. It's about fear."
Two of the other women echoed Rev. Griffin's sentiments, urging Waver to accept what's being offered. Rev. Griffin then directed the conversation on to other women's concerns, but at the end of the session, talk gravitated back to Waver's dilemma.
"I know I can do this, but I'd rather stay scared," Waver reflected.
"Give him to me, baby!" Amy called out playfully, cutting through the tension. When the laughter died down, she added in a serious tone, "Enjoy him!"
"I'm trying," Waver responded grimly.
Is There An HIV+ Women's Community?Since more HIV+ women than ever before are coming together to discuss their common concerns, there is in this sense an HIV+ women's community. But one could make the case that it is an extremely fragmented community.
Rodriguez believes there to be a much more close-knit community among HIV+ gay men than among HIV+ women, and cites the absence of outspoken HIV+ women leaders as a measure of women's relative isolation.
"There aren't enough female role models," she says. When she attended a lobbying event in Washington D.C. with an Illinois contingent recently, she notes, "I was the only Hispanic female representing my constituency. There was also only one white woman and one black woman."
A lack of communication is a major obstacle to making advances in building community. And once again, the stigma attached to the disease is what keeps women silent.
Tucker says that one indicator of women's refusal to discuss being HIV+, even with their closest friends, is the relatively small number of women who find Chicago Women's AIDS Project through referrals from current clients. She also finds the general under-utilization of excellent -- and much-needed -- services for HIV+ women to be an indicator of a lack of communication.
What both frustrates and encourages Tucker is her conviction that there is a natural network that simply needs to be activated. "We must pass information to each other as women have historically done," she says. "When I was in high school, every girl knew about Planned Parenthood." Continuing to chip away at the stigma, she believes, will give an increasing number of women the freedom to discuss HIV and AIDS with each other.
When one considers the concept of an HIV+ women's community, it is important to also consider the vast diversity of HIV+ women who are members of many different communities. HIV+ women come from across the economic spectrum and from all age groups, ethnicities, and religious backgrounds. They have different histories, different goals, and different perspectives on their disease.
To further complicate the picture, it is imperative to address clearly documented trends affecting some communities but at the same time it is hazardous to make generalizations about the communities themselves or about the services they are given.
Studies have suggested, for example, that HIV+ women and people of color are less likely to receive adequate health care than HIV+ white men. While this may be a general trend, and it's imperative to try to rectify the imbalance, it's not an absolute. Some women are receiving excellent health care, and in this regard their experience differs greatly from that of women who are not.
The complexities of the HIV+ women's community sometimes result in very different women being thrown together in doctors' waiting rooms, in AIDS-related volunteer activities and in support groups. Some women might feel comfortable with everyone they encounter, but others, understandably, might feel unable to relate and therefore unwilling to share.
Consider, for example, the differences between: an injection drug user who never finished high school and a career-oriented professional; a middle-class teenager who is preparing for college and a longtime prostitute; a woman in a healthy relationship and a woman who is being battered by her alcoholic spouse. Like it or not, some HIV+ women suggest that it isn't always possible to find meaningful common ground. As one HIV+ woman who has had mixed results when she has shared her experiences with other HIV+ women notes, "We don't all mix in the same pot."
Women leaders still emphasize the importance of women's common experiences, and rightly so. Griffin looks at it this way. "Before you got AIDS you were a woman, and now that you have AIDS you're still a woman. You had the same issues as your sisters and girlfriends, and you still do. Those issues are just complicated by the virus."
In this light, it's not surprising to hear Griffin say that relationships with lovers, family and friends are among the most common topics of discussion at the APCN support group's meetings.
Why are these issues so important to the participants? For the same reason that they're important to all people who seek to give and receive love. As Griffin puts it, "These women want to laugh and live and enjoy life as much as anybody."
Good Medicine for WomenHIV-positive women need to understand that they are far from powerless to affect their physical health. Every HIV-positive person faces many health-related decisions on an ongoing basis, and making smart decisions can have tremendous benefits. Perhaps the most important series of decisions are those relating to interactions with health care providers.
It is absolutely essential for a woman to feel comfortable talking to her doctor about every aspect of her health. A high level of communication between patient and doctor, which is very different from the model that many women grew up with, gives the patient more input and greater peace of mind. A good patient-doctor relationship requires a foundation of trust, respect and openness in both parties. If a woman feels like her doctor discourages her from asking questions or criticizes some aspect of her behavior, then she should consider "firing" her doctor, as some patient advocates like to put it.
Even women who are satisfied with how their doctors relate to them need to consider whether they are taking full advantage of the resources that are at their disposal. Dr. Pat Garcia, Assistant Professor of OBGYN at Northwestern University Medical School and Director of Northwestern's HIV Women's Program, is a wellspring of advice on how to be a savvy patient -- or how to "maximize your health care," as she puts it. Her pointers:
Similar Obstacles Thwarting Prevention EffortsMany of the issues complicating the lives of women who have HIV and AIDS are closely related to the issues that originally put these women at risk for HIV infection. Consider how the following obstacles to treatment and support are also obstacles to AIDS prevention.
The Stigma of HIVBecause of the stigma of HIV, women are hesitant to seek out safer sex information, women with male sexual partners are afraid to ask their partners to use condoms, and women are reluctant to talk with sexual partners about HIV testing.
A Failure to Realize that Women Are at Risk for HIVNot enough doctors talk to their female patients about protecting themselves from HIV, not enough parents talk to their daughters, and not enough friends talk to each other -- all because of outdated perceptions that AIDS is a "gay disease" or an epidemic occurring in someone else's community.
The Language BarrierBoth written and verbal communication efforts are outpaced by the vast needs of non-English-speaking populations.
Cultural DifferencesThere are a wide range of communities and sub-communities that need to know more about HIV prevention, and these groups have different means of communicating. Only some of the differences might fall along ethnic/racial lines. Other factors -- such as educational level, economic status, and the presence or absence of drug or alcohol abuse -- also set women apart from each other. Plenty of HIV prevention education efforts are less successful than they otherwise might be because the educators don't fully understand the identities of the groups that they are addressing.
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.