“Before I was diagnosed with HIV in 1994, I was a huge people person, but afterwards, I didn’t want to be bothered with the world,” Gina Brown, a community organizer for the Southern AIDS Coalition, told The Root.
The New Orleans native added that not only was she hiding from herself, but she was also hiding out of fear of people finding out she was positive: “I thought if people looked at me, they would know I had HIV, so when I was home, I never opened my windows or raised my blinds. No one ever knew I was home.”
She added, “I was a plant wilting in the dark, living in darkness, depression and pain.”
Now, in 2018, one might believe that Brown’s experiences are merely a thing of the past, but sadly, that’s not the case. Isolation, stigma and a lack of support are still haunting black women living with HIV/AIDS, especially in the South, according to a recent study, “Networks That Care: An Ethnographic Research Study of Women Living With HIV.” (pdf) Most importantly, these factors play a role in whether or not HIV-positive women stay linked into lifesaving care.
Conducted by ViiV Healthcare in conjunction with its Positive Action for Women initiative and ReD Associates, “Networks That Care” provides a snapshot of 14 HIV-positive African-American women—both cisgender and transgender—living in New Orleans, whose own personal experiences drove the report, an approach that is often rare in research.
“We had a firm belief that in order to find better solutions that would work [for this demographic], we have to put [these women] at the center of the design and decision-making,” said Amelia Korangy, who leads ViiV’s Positive Action for Women programming.
Translation: Listen to black women.
And if you lean in close enough to hear their brave voices, you’ll learn that while trying to grapple with their positive diagnosis, they are also caught in the crosshairs of external and internal stigma, a community lacking true knowledge about HIV, and crippling fear that the community they have spent their lives creating and building up will turn its backs on them.
For these ladies, this is literally a matter of life and death.
In Their Own Words
One major trend that jumps off the report’s page is how prevalent isolation and internalized shame are in these women’s lives. Living in the Bible Belt and being force-fed dated and inaccurate notions about the virus, many believed they “were not supposed” to contract HIV.
As one participant pointed out, “I always heard the stigma, ‘Homosexuals will be first.’ In street terms, it’s a gay disease.” Others claimed that HIV was for “prostitutes” and “promiscuous women,” with one even believing that her diagnosis morphed her into “a person I never thought I would be.”
As Korangy explains, an HIV diagnosis drastically alters how these women view themselves and their morality: “For a lot of woman, a positive diagnosis challenges their sense of who they were, partly because of the shame and because they believe they are breaking social norms. That’s why it’s important to reinforce that regardless of [their HIV status] they are still a great mother, a great sister and great friend.”
She added, “Instead, too many times, they don’t feel worthy of love or support. There is this notion that no one is ever going to love them or see them the same way again.”
According to some of the women interviewed, these feelings led to an array of consequences, including depression, substance abuse and even suicide attempts. And while low self-worth led to self-isolation, isolation was also a result of rejection, humiliation, and/or verbal and physical abuse from family and romantic partners.
One participant shared that when she lived with her family—before they eventually kicked her out—they made her eat from separate plates, bleached the tub after she used it and forced her to wash her clothes in a different washing machine. Mind you, it’s impossible to transmit HIV from casual contact, but such myths persist.
Witnessing ill treatment of other HIV-positive people—whether it’s within one’s family, from folks on the block or at one’s neighborhood church—has served as a cautionary tale that has stopped positive people from disclosing. But this rings especially true for black women, who tend to be more dependent on their family and social networks for support. Also, for those who had children, the report found that mothers were afraid that disclosing would mean their kids would be bullied and shunned, so they remained silent.
One woman was clear: “I don’t want to be talked about ... people not liking me, whispering, say nasty things, put something up that’s derogatory. I just keep my business to myself.”
But what was really heartbreaking was how far some of the women would go to conceal their status from their loved ones.
One woman admitted that she would literally hide her AIDS meds in her underwear drawer, delete all web history related to HIV and cover her face with a towel so they wouldn’t hear her crying. She truly believed that her raw emotion would reveal the fact that she was HIV-positive.
For Marsha Jones, the executive director of the Dallas-based Afiya Center, these painful stories are just not NOLA-specific; they are happening all over the country: “For years, we’ve seen so many women like this, not comfortable bringing their full selves to the table, hiding their status or just being in complete denial that they have HIV. Sadly, too often, these are the same women that fall out of care and end up dying as a result of keeping this secret.”
The Emotional and the Physical Are Connected
As Jones mentioned, isolation and shame don’t just impact the mental and emotional health of black women living with HIV/AIDS; they are also directly linked to these women’s physical health and mortality.
According to the Centers for Disease Control and Prevention, in 2015 black women accounted for 60 percent of new HIV diagnoses among all women living in the U.S. We are also nearly 20 times more likely to contract HIV than our white counterparts, and in 2014, positive black women had a higher death rate than women of all other races and ethnicities.
Marc Meachem, ViiV’s head of external affairs, agrees with Jones, noting that from HIV prevention to treatment, black women are not reaping the benefits of these biomedical interventions.
“In places like San Francisco, in a near future they will reach their goal of no HIV infections,” Meachem said, “but the promise of medicine and treatment is not being enjoyed equally, especially in places like the South that is the hotbed of new HIV infections.”
He added, “Black women can’t get to zero if we don’t have insight into their lives and experiences.”
With this intense and much-needed focus on their personal lives, in no way does “Networks That Care” dismiss or ignore the sociopolitical and structural factors that fuel the AIDS epidemic in black America, such as economic instability, racism, mistrust of the medical system, housing instability, gender inequality, IV drug use and high rates of incarceration.
All of this works against black women, HIV positive or negative, but Meachem stresses that we cannot ignore that “[there are] women living with HIV who don’t believe they are even worthy of treatment.”
Where Do We Go From Here?
Yes, many of these findings are disheartening, but there is a silver lining: There are strategies and solutions that can and do empower black women living with HIV/AIDS. For starters, having allies, even if it’s one person, can make a huge difference in their lives.
Octavia Lewis, a trans black woman who was diagnosed in 2006 in Georgia, can speak to this firsthand.
“As a trans woman, I honestly believed I would contract HIV at some point in my life,” she said, “but when I got my diagnosis, reality sunk in, and I sat at home for weeks letting myself waste away. I thought no one was going to love me.”
Lewis added, “Thankfully, my roommate reminded me I could live with this disease and that I was going to be OK. I can only imagine how much better other people would be if [they] had that person in their corner.”
In addition, the report found that once women got over their initial mistrust of the medical community and got linked to care, many admitted that going to appointments with their doctors was a game changer.
This rang especially true for those isolated from social settings who found themselves interacting with doctors and clinical staff who were culturally competent, empathetic and treated them like “normal people.” These crucial moments established trust and encouraged women to come back and continue accessing care, not just to strengthen their own health, but to feel less alone.
But this is just a start.
Obviously, advocates and researchers have more work to do, but so do the rest of us, given that HIV-negative folks inflict most of the stigma and pain on positive folks in our community. Our contribution could include educating others and ourselves about the epidemic, checking our own misogyny and transphobia, and realizing that if black lives actually matter; we cannot leave behind black folks living with HIV—not ever.
“Ignorance is the enemy, and when we come to you all speaking our truth, it’s important that you all are not saying things that not only didn’t make sense 25 years ago, but make even less sense now,” Brown stressed, adding, “Uplift us, listen to us, learn from us and love us.”
Kellee Terrell is an award-winning filmmaker and journalist, loving daughter, zombie slayer and not the one. Follow her on Twitter.