The first time Michelle Anderson came out about her HIV-positive status, she stood in front of hundreds of Lone Star Riders, a biking group in her home state of Texas. The second time Anderson came out, she posted it on her Facebook wall on World AIDS Day.
“We do it big here in Texas, so if you’re going to do something, make it big, make it grand,” laughs the 44-year-old addiction recovery coach in Dallas.
Anderson hasn’t always been so forthright about having HIV. When she was diagnosed in 1999, she felt hopeless. “I was like, ‘I am HIV positive, and I am going to die,'” she recalls.
But after moving into a supportive housing unit for people with HIV eight years later, Anderson changed her tune. “I wanted something different,” she says. “I got tired of feeling the way I was feeling, I got tired of always being in pain, I got tired of carrying this weight on my back.”
Anderson has since been an outspoken advocate for women with HIV, writing for The Well Project’s A Girl Like Me blog and even winning the 2011 title of Miss Plus America — a pageant for plus-sized women and teens — to raise awareness and fight the stigma surrounding women with HIV. She was the first openly HIV-positive woman to take a national crown and use her status as her platform.
“I realized I have a voice in this,” Anderson says. “I don’t have to allow stigma to determine the outcome of my life.”
No Longer a ‘White, Gay Man’s Disease’
About 217,000 American women have HIV, making up about one-quarter of all people with the disease, according to the Department of Health and Human Service’s Office on Women’s Health. While some women, including African-Americans and Latinas, have higher rates of infection, and older adults of both genders are more likely to get diagnosed at a later stage, no race, ethnicity, age or sexual orientation is immune, according to the Office on Women’s Health.
In a seven-year study comparing HIV-positive women to HIV-negative women, researchers didn’t find any significant differences in behavior between the groups. “It was the most depressing study because it was only by the grace of God that women were negative. They were doing the same risky things that the positive women were doing,” says Gail Wyatt, a clinical psychologist and director of the University of California–Los Angeles’ Center for Culture, Trauma and Mental Health Disparities, who led the study.
Those findings ring true to Anderson, who had always considered HIV “a white, gay man’s disease.” She believes she contracted HIV from a man she dated exclusively for two years. “I didn’t use protection because I loved him, and I was in a monogamous relationship,” she says.
Anderson’s experience illustrates why women’s diagnoses are often delayed more than men’s.
“Most men in the U.S with HIV have a risk factor for infection that they themselves can identify — it’s because they have sex with other men, or they’re injecting drugs,” says Ruth Greenblatt, a professor in the University of California–San Francisco’s School of Pharmacy who studies HIV infection in women. “But for women, the major risk factor is having sex with an infected man. And that man may not tell them or may not be aware of it.”
From Death Sentence to Chronic Illness
Several years after her diagnosis, Anderson had a dream. In it, she saw her family gathered around a bed with a faceless, white-haired woman. “I had this overwhelming feeling that it was me — and that I knew I wasn’t going to die from this disease. I was going to die from old age,” she says. “And that helped me to survive.”
Now, when asked how her daily life differs from someone without HIV, Anderson responds, “it isn’t. I just take a pill.”
Antiretroviral treatments for HIV have drastically improved survival rates since the three-medication concoctions were introduced in 1996, Greenblatt says. “It really has changed HIV to be a chronic illness comparable to other illnesses,” such as high blood pressure or diabetes, she says. In fact, Greenblatt adds, HIV “is probably easier to manage than Type 1 diabetes for patients because this is something that can be treated increasingly with a single pill, once a day.”
Even pregnant women with HIV have a less than 1 percent chance of transmitting the virus to their children if they take medicine, according to the Office on Women’s Health.
The challenge now is compliance, Greenblatt says. “If you take [the medication] inconsistently, your HIV virus may come back and it may have become adapted to that medication and it may not work again,” she says. “So it’s really important that people take their medicine.”
Taking antiretrovirals regularly can be a challenge for women, since they may experience more side effects — such as diarrhea or nausea — due to the fact that recommendations for dosages tend to be based on clinical trials involving men. HIV medications can also interfere with hormonal birth control, making it particularly important for women to keep all their doctors in the loop on their prescriptions, Greenblatt says.
A Treadmill, Not a Path
Despite progress in treatment and some reduction in stigma, in many ways, Wyatt says the fight against HIV/AIDS in the United States “feels like a treadmill — it doesn’t feel like a path.”
For one, research funding to study women and HIV has lagged as more resources are being funneled toward African-American men who have sex with men, a group in which the epidemic appears to be increasing, Wyatt says. “As a result, women are not getting the time and attention they need.” That’s a shift since 1995, when she received her first federal grant to study the disease. Back then, Wyatt says, there was concern about HIV among women and support for research into how it could be prevented and treated. “Today, there’s very little money being directed toward women,” she says.
Support for some of the most vulnerable groups of women — including those who are unemployed, have little or no education, or who have poor or no health care — has stagnated, too. “They’re the same vulnerable women that we were talking about 10 years ago,” Wyatt says. “We simply haven’t made the strides that we need to to get women to a different place.”
Wyatt encourages all women to take responsibility for their own and each other’s health by volunteering for organizations that help disadvantaged women or talking frankly about relationships with younger generations. “Instead of talking about sexual positions and who’s sexy and not, we need to be talking about how do you proceed as a woman to maximize the chances that you get a chance to live your life,” she says.
Anderson, for one, has embodied that message. Though she’s careful not to glamorize HIV, she credits the diagnosis with eventually giving her purpose. “Because of HIV, I’m able to live my life out loud,” she says. “People think that it’s a death sentence, the end of the world, like I did. But I realized that it was a stepping stone to get me where I needed to be today.”
More from U.S. News
16 Health Screenings All Women Need
What Not to Say to a Breast Cancer Patient
10 Questions Doctors Wish Their Patients Would Ask
What It’s Like to Be a Woman With HIV originally appeared on usnews.com