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Women are some of the strongest beings alive. We drive change. We foster innovation. We stand up for ourselves, and for each other.
And yet, women continue to be marginalized in society. Women make less money than our male counterparts for doing the same work. We’re underrepresented on boards, in government, in STEM-related careers. We struggle to get access to the health care we need. Our bodies are policed, and our rights stripped away.
All of that is true for even the most privileged of women. But we can’t talk about women’s issues without digging into the intersectionality of race, gender, sexual orientation—and one’s HIV status.
Because white women make less than their male counterparts—but women of color make even less than white women. Women who are queer and trans are more likely to be victims of sexual assault than their straight counterparts. Black women are three times more likely to die in childbirth than white women.
And today, nearly 1 in 4 four people living with HIV today are women—with the majority of new cases being among Black women.
Addressing the multitude of systemic and societal issues facing women, including women living with HIV, is a massive undertaking, and my colleagues and I are working to drive change on these issues every day. But one enduring issue—and one we can all start working to change right now—is the stigma surrounding HIV.
HIV stigma
The stigma around HIV is driven in large part by “othering”—the erroneous belief that HIV is something that happens to certain groups of people; it happens to them, not to me. It also involves blaming people for having HIV and thinking they must have done something to deserve it through their own personal choices.
And for women, HIV stigma doesn’t exist in a vacuum. Because women already have less control over our sexual lives because of gender-based violence. We’re already shamed simply for engaging in sex. Women of color have faced centuries of discrimination and racism. And the landscape for queer and trans women is downright threatening, with our very right to exist being questioned every day. All of these together create a complex amalgamation of societal stigma and judgment.
The effects of stigma
Even though HIV and AIDS have been around for decades, there’s still a lack of public awareness about what it is and how it’s transmitted. People living with HIV are treated as second-class citizens. They’re ostracized. They’re disowned by friends and family. They’re refused job opportunities, evicted from their homes and denied access to health care.
People living with HIV can also internalize the stigma they experience and develop a negative self-image, which can lead to mental health issues like depression and anxiety—conditions that are highly stigmatized in themselves.
And so, out of fear of being judged, many people living with HIV keep their status to themselves, not even telling their closest friends or family about their diagnosis. This further reinforces a feeling of isolation and “otherness” within the person living with HIV, which further feeds into mental health issues. In this sense, the stigma against HIV can be more detrimental to the person than the HIV itself.
Stigma affects our entire community
The stigma around HIV is harmful for people living with HIV—and for everyone else, too. Because women are vital members of our community. They’re doctors and lawyers, teachers and scientists, mothers and caregivers. And when women living with HIV are plagued by stigma, judgment, and all that comes with it, they simply can’t live up to their fullest potential. And that hurts us all.
What’s more, the stigma around HIV can prevent people from seeking the treatment they need or make it difficult for them to keep up with their treatment. People who fear being judged about HIV are also less likely to get tested, and even people who take steps to prevent HIV (like by taking PrEP) can be seen in a negative light. And when people aren’t getting treated, don’t know their status and aren’t taking steps to prevent contracting HIV—that all contributes to the spread of HIV.
How can we stop the stigma?
First and foremost, remember that HIV is just a virus. It doesn’t discriminate. It doesn’t target certain people or groups. It can happen to anyone.
Educate yourself. Today, people living with HIV who have access to care and are adherent to their medications are able to live long, healthy lives with virtually no risk of transmitting the virus to anyone else.
Be curious and open. Make space for conversations about HIV. Listen to women—cis and trans—who are living with HIV and learn from their lived experiences.
Call out stigma when you see it. Be an ally for the rights of women of both cisgender and transgender experience, and help bust misconceptions about HIV when you hear them. Use what you know to educate others.
In other words, normalize talking about HIV. Uproot the stigma. Dismantle false notions.
Getting rid of the stigma alone won’t end the HIV epidemic. And it won’t address the myriad other issues women face. But so long as the stigma persists, so will HIV.
And you have the power to help make that change.
So go do it.
Naomi Jones is a prevention services supervisor, SE Region with Vivent Health, a leading provider of HIV prevention, education and care in Milwaukee and an adjunct faculty member at National Louis University in Chicago. She holds a master’s in Social Welfare and is an advocate for public health and trans justice. She’s the reigning Miss Trans USA. Naomi has been living with HIV since 2010.
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