HIV+ Women: Caretaker, Wife, Worker, Stigmatized

When it comes to women with HIV, the stigma can be as devastating as the infection itself. As long as myths surround women and HIV, services and interventions will be lacking.

The reality is that women accounted for over one-fifth of the estimated 49,273 new cases of HIV infection in the United States in 2011, the most recent year reported by the Centers for Disease Control.

Women face a whole host of issues separate from HIV positive men.

"The expectation is that women are not inherently considered members of a high risk group," explained Rebecca Block, at Oregon Health & Science University and co-chair of Camp Starlight for children with or affected by HIV. "So I think there's additional blame when it comes to women since they're not the ones who are supposed to be getting HIV."

The problem is compounded by the fact that for years, HIV was considered a male (specifically gay male) disease, which means a lack of tracking studies or research on women compared to their male counterparts.

"Most of the medical studies on HIV are done on men, so I think we have to go on faith with the information we have about treatment," noted Dawn Trook, who contracted HIV back in 1998. "We have to create an informal network of communication amongst us to talk about what we know about rates of transmission from women.

"A woman's body doesn't work like a man's," she added, "but the party line assumes that HIV is passed through our sexual fluids as well, even though that's not been proven at all. We're considered sexually toxic without any proof of it. It's a challenge because there's simply just not enough studies done on women with HIV.

Unfortunately, even many doctors remain uninformed about women with HIV. "Women are not getting testing because they're not sold the need to test," Block said. "A woman goes to hospital and doesn't get tested until she gets sicker and sicker because she doesn't fit the profile. She doesn't self-select and the doctors don't test her either."

In the Family Way

When Trook, now 47, was diagnosed with HIV in 1988, it was like an the earth shook under her feet. Except that it did: She was living in San Francisco and it was the World Series, which was famously interrupted with a quake. At the time, her fianc� was in the hospital and had just been diagnosed with AIDS. He was the first person she told. Her family was next.

"They were waiting to hear about what was going on with my fianc�, whom I'd been with on and off for 16 years, since I was 16 years old," she recalled. "I still remember how my little sister started crying when I told her my fianc� had AIDS and then how she started crying harder when I told her I was HIV positive too.

"When I disclosed to my mom on the phone, I was giddy. I told her, 'Well, that's one thing I don't have to live in fear about anymore!' I was nearly laughing. I felt like I was floating. I hardly felt anything about it for a good decade. I then started just telling everyone, almost indiscriminately. I think it was part of my denial or some strange way of dealing with it."

Mary Hendricks can tick off a laundry list of issues confronting women in the dark early days of the epidemic: "dating, relationships, choices of being a mother, single parenting, side effects to the medicines, and woman's OB/GYN health issues as opposed to a man issues with HIV." At that time, nearly all (or, more likely, all) of the studies on HIV -- research, treatments, and medication -- were male gender based.

Women like Hendricks have to bear the additional stigma of being mothers (and wives). Because women are supposed to be the caretakers, "People ask, 'How could you do this to your children or to whomever it is they are supposed to be taking care of?'" Block noted.

When Arkansas native Hendricks first discovered she had seroconverted 26 years ago, she was scared to death, sick to her stomach, and constantly worrying about her sick husband and 10-year-old daughter from a previous marriage.

Hendricks was devastated when her daughter died in 1984 at only six months old from viral pneumonia after an immunization shot. "My husband and I were just moving on from the death of our daughter and were trying to have another baby" when her husband became ill and was finally diagnosed with full-blown AIDS in 1987.

After Hendricks learned of her own status, "I cried a lot in private while picking up the slack because of then being the sole provider, caregiver, wife, and mother" of another daughter from a previous marriage. Her doctor advised her not to have any more children and if she did get pregnant she should abort it.

Relationships & Pregnancy

Like Hendricks, "A lot of women feel that their lives have to change after receiving a positive result," said Ebony Frison, an HIV social worker in Washington state whose caseload is nearly one-third female. "Many women decide that they can no longer marry, have sex, or even have children.

Since many women want children, a diagnosis can strip them of their perceived value and social identity as part of a reproductive couple, suggests Naina Khanna, executive director of Positive Women's Network - USA (PWN-USA).

"It's not just being a woman, but being part of a heterosexual community, that it's just still something that doesn't happen to 'us,'" noted Trook. "I definitely felt for a long time like this shouldn't have happened to me. Part of that had to do with feeling like I should've been smarter than all that. But it's not about intelligence."??

Trook was engaged and in a monogamous relationship when she received her diagnosis. "I never used needles or had a blood transfusion."

After Louise, now 53, a Southern California native living in Vancouver, Wash., received her diagnosis in 1986, she feared losing her husband, who is not positive. Instead, he told her he was "in it for the long haul" -- and has been.

For most women, however, dating and relationships can become a minefield. "The first person I disclosed to on a date, said something like 'What were you thinking?'" Trook recalled. "A guy didn't call me back because he found out about the HIV; in a kind of nasty tone of voice, after I said, 'It's not an issue for everyone,' he said, 'Well, it would be an issue with me!'"

Trook recalled a gay man telling her that half of men to whom he disclosed his status were also positive. "In my fifteen years of disclosing to romantic interests, that's never happened to me!" she exclaimed.

With proper treatment, women can expect to live a normal life span and can even have children without fear of transmitting the virus, Khanna pointed out.

Lack of Services

Women react particularly well to support groups -- if they can find them.

There remains a woeful lack of services addressing women's needs. A few organizations are working to address the lack of women's services, such as Christie's Place in San Diego and Choices in Memphis. But most services are directed at men having sex with men.

Louise eventually found a support group, but it was dominated by gay men. "There was only one other woman in the group," she recalled. "All the men died within two years and that was scary and depressing for me."

"It's good to know that there is a safe space exclusive to women," Fison noted. "Some of these women were hurt by their male partners. Others are fed up with sharing their space with men for the obvious reasons."

That's not to say that HIV-positive men and women cannot identify with one another. "We are all concerned about the disfiguring that can happen when one has HIV," such as lipodystrophy, fat redistribution throughout the body; lipoatrophy. facial fat loss; and opportunistic infections, Louise said.

Louise still finds it very difficult to find other HIV positive women with whom she can connect. "Most of the women that I have met with HIV have had serious drug problems in the past," she said, "or come from a different type of background that I come from."

Fighting a Stereotype

The stereotype remains that HIV only affects the poor or drug users. Other women are accused of being irresponsible, People think, in Block's words, "You're not someone who should have gotten HIV. You should have known better. You were morally compromised. You were behaving badly. You were tawdry."

"We are not our disease and that HIV does not discriminate," Louise noted. "It's very important for people not to ask, 'How did you get HIV?' because when they ask that question, it seems like they are trying to decide, 'Did they get it the bad way' -- prostitution, IV drug use, promiscuity -- or did they get it 'the good way' -- sex with the wrong person. Many of us with HIV hate that question because we feel like the person asking the question is going to decide whether we were being stupid or if we are/were a victim of circumstances."

Being an affluent professional adds yet another layer of stigma. "No one would ever expect a successful woman to be HIV-positive," Frison said.

Several studies have shown that better-off HIV-positive women have even more to lose by disclosing their status; e.g., jobs, social standing, family support, even housing. Accessing services, let alone being an activist or involved in advocacy can compromise them. This, in turn, "results in greater social isolation and can lead to poor physical, mental, and emotional health, including depression," Khanna said.

Many women living with HIV want to work or go to school but some programs ironically require that they maintain their income below a certain level in order to qualify for access to medication and other essential services.

Hendricks considers herself lucky. She immediately shared her status with her supervisor at the medical facility where she worked. She was transferred from surgery to ICU as a medical technician at a time when "most healthcare workers during that time period were fired for being positive."

For several years, Louise, on the other hand, confided in very few people outside of her immediate family and a few trusted friends. "I have learned to be selective in who I can befriend in disclosing my status," she said. "I have had my share of experiences of feeling 'less than and worthless' around certain people, such as doctors, ministers, acquaintances, and people with whom I've been in relationships."

Coming Out About HIV Status

When she turned 40, she joined a speaker's bureau and began sharing her experiences in schools. Increased visibility of HIV-positive women will help erase the stigma over time. "We need people to get to know us," Louise said. "That's one reason why I was speaking in the schools."

For women like Trook, greater visibility can be empowering -- and over time, will help erase the stigma hanging over women with HIV. "When it comes to women with HIV, people need to know, 'We are living among you! And we can't hurt you,'" she said.

Trook happily described herself as a nomad, "taking a medical leave and housesitting in various places across the United States with my wonderful boyfriend." She started Sweetie Pie's Cookery, a traveling performance laboratory-cum-bakery, to teaches science to kids through interactive baking demos.

"I was worried working as a baker and during my years working with children that people would be scared somehow, due to ignorance, that I wasn't 'safe' in these professions," Trook said. "I live a vibrant life, and I've never, except for the normal reasons, like needing to nurture a heartbreak, given up on romantic love. I love fearlessly.

"I'm super-happy," she said. "I've definitely gone through periods of my diagnosis where I had more fear and resentment about it, but now I wear it more lightly, and definitely feel like it has helped me grow.

"If we want to eliminate the stigma about women with HIV then we have to get informed. Read the only study of female-to-male transmission rates. Don't make assumptions about how we got this disease. This could've happened to so many of my friends."

Jenny Block is a Dallas based freelance writer and the author of "Open: Love, Sex, and Life in an Open Marriage" (Seal Press, June 2008). Block's work has appeared in Cosmopolitan (Germany), USA Today, American Way, BeE, bRILLIANT, the Dallas Morning News, D, Pointe, and Virginia Living, as well as on huffingtonpost.com, yourtango.com, and ellegirl.com. You can also find her work in the books "It's a Girl" (Seal Press, March 2006, ed. Andrea J. Buchanan) and "One Big Happy Family" (Riverhead Press, February 2009, Rebecca Walker, ed.).

This story is part of our special report: "HIV Minority Report". Want to read more? Here's the full list.