Finding Our Voices: HIV, Intimate Partner Violence and Healing From Trauma
March 10 is National Women and Girls HIV/AIDS Awareness Day. One in four people living with HIV in the United States is a woman, and only half are in care. BETA Blog invited frequent contributor Heather Boerner to shed light on a very serious issue that impacts these women disproportionately and contributes to low rates of retention in care: intimate partner violence.
Scroll to the end of the article for a list of resources and for additional information on domestic violence.
When Jay Blount first met the man she would marry, she was thrilled that he wasn’t put off by her AIDS diagnosis. Quite the contrary, he defended her to his family. She fell in love with his kindness.
But alcohol stripped that kindness away. Today, Blount doesn’t look at the long, jagged scar on her arm — the result of one particularly brutal beating — without thinking of her husband. There were times, she said, when the pain from a beating was so severe, she wished she would die. She tried to commit suicide more than once. But if her husband hadn’t died from complications related to diabetes, she doesn’t know if she ever would have left him.
“My thought was, ‘I will never find another man who will love me, because of my AIDS,’” Blount says. There were many reasons she stayed, but that was one of them.
Blount’s story is all too common in the lives of women with HIV. According to a 2012 study in the journal AIDS and Behavior, more than half — 55 percent — of women with HIV have ever experienced violence from a boyfriend or spouse. That’s more than one and a half times the rate for American women as a whole. The violence Blount experienced was physical, although intimate partner violence (IPV) can extend beyond physical assault. It can also include sexual abuse (rape, sexual coercion) or psychological or emotional harm (manipulation, constant criticism) as well.
Here, we look at the role of IPV in the lives of women with HIV. We explore what it is, and how it can contribute to infection, worsen after diagnosis, and contribute to poorer HIV treatment outcomes. Finally, we’ll talk about a new approach for women with HIV who’ve been part of this cycle of violence—and offer practical resources for women to get the help they need, when they need it.
Cycle of Violence
One characteristic of abusive relationships are their cyclical nature—they’re not abusive all the time. Oftentimes the beatings, verbal attacks or sexual assaults are interspersed by “honeymoon” periods. These times of calm, pleas for forgiveness, and sincere promises to change eventually give way to tension and the next inevitable explosive outbreak.
It’s the intermittent nature of violent relationships that can make them so hard to leave, says Dazon Dixon Diallo, executive director of SisterLove, an Atlanta-based nonprofit that has a long history of facilitating support groups for women with HIV in abusive relationships.
“Here’s the thing,” says Dixon Diallo, “A woman doesn’t want you to lock her man up. She’s in this relationship, and she knew him to be a different person at a different time and it’s painful.”
IPV Increases Risk of HIV
Women who experience violence in a relationship may not have the power or desire to leave the relationship—resulting in problems that extend beyond the immediate physical or psychological harm.
Before her string of abusive relationships, and before her AIDS diagnosis in 1996, Blount watched her mother get hit by one boyfriend after another.
“That’s where I learned, that if you don’t hit me, you don’t love me,” she says. “I know I have picked the wrong men all my life because of it. The way my mom and her partners normalized IPV is the reason I accepted the abuse, for the makeup and the ‘after it’s over’ love.”
But according to research, witnessing violence as a child didn’t just prepare her for other violent relationships; it may also have primed her for HIV infection. A number of studies of women with HIV suggest that IPV can place women at risk of getting HIV.
Women with a history of violent relationships are more likely to engage in behaviors that are known to increase risk of HIV, such as injection drug use, exchanging money or drugs for sex, and sex without using condoms. Women with a history of sexual abuse have been found to engage more frequently in other HIV-risk behaviors, such as sex with multiple partners, inconsistent condom use, and drinking alcohol prior to sex.
Women in violent relationships are also less likely to engage in behaviors that are protective — like getting tested for HIV, or making and keeping medical appointments.
Many studies have found evidence that women with HIV are more likely to experience intimate partner violence. Studies also provide evidence of causality: essentially that experiencing intimate partner violence leads to an increased risk of HIV infection. In one longitudinal study of women in South Africa who were followed for two years, women who got infected with HIV during the study were more likely to report being in a violent relationship at the start of the study.
Why might IPV lead to infection with HIV? One reason may be that women in violent relationships are not fully in control of the HIV risks that they take. In the longitudinal study of women in South Africa referenced above, the researchers found that women who got infected with HIV during the study were more likely to be in relationships where they lacked power and control. Women who aren’t in a position to insist that their partners use condoms or get tested for HIV have a greater risk of being infected.
Annika Lindskog, PhD, an associate senior lecturer at the University of Gothenburg, explains that the relationship between IPV and HIV infection can also stem from characteristics of the male partner. Lindskog’s research across ten countries in Africa found a strong correlation between male controlling behavior, physical and emotional violence, and HIV infection. “Basically, the men who expose their partners to HIV risk with their own sexual behavior are the very same men who are controlling their women with violence,” she says.
The consequences of this, as Dixon-Diallo sees it, are that, “it’s useless to have a conversation about safer sex with people who have no power to negotiate their own safety.”
Violence After HIV
We also know that, in some instances, being infected with HIV can open a woman up to more violence. As many as half of HIV-positive women who reported violence in their relationships in a 2000 study said that the violence was connected to their HIV status. And a 2007 study in the journal Trauma Violence and Abuse found that among women who experienced violence, women with HIV reported violence that was more frequent and more severe.
In the worst cases, men have used HIV status as justification for murder.
That’s what happened in the fall of 2012 when Larry Dunn visited his girlfriend, Cicely Bowden, 28, at her Dallas home while her kids were out. The week before, Bowden had revealed to Dunn that she was HIV positive. After Dunn and Bowden had sex, Dunn went into the kitchen, found a steak knife, and stabbed Bowden to death in her bedroom, according to a report in The Root.
When he was arrested and later confessed to the murder, Dunn said he did it because he was convinced that he’d contracted HIV from her.
“She killed me,” he said in a videotaped confession played for the jury, according to the Dallas Morning News. “So I killed her.” At the end of 2013, Dunn tested negative for HIV.
Just as IPV can leave physical scars, it often also results in emotional or psychological scars that can leave women fearful, doubtful, afraid, and their sense of self-worth decimated. When violence results in feelings that impede daily life, psychologists consider that violence to have caused trauma. Experiencing trauma can lead to post-traumatic stress disorder (PTSD), a syndrome characterized by recurrent thoughts, nightmares, flashbacks and severe anxiety.
Often, says Edward Machtinger, MD, director of the Women’s HIV Program at the University of California, San Francisco, he sees patients with complex PTSD who try to alleviate trauma by using drugs and alcohol, which can create additional health concerns.
For women with HIV, IPV can interfere with successful treatment and management of HIV.
A few months ago, Dixon Diallo was at a treatment-retention event in Atlanta, and recalled a woman casually mentioning that things weren’t great at home. She was on treatment, but her boyfriend wasn’t. And that wasn’t all. It turned out that he was hitting her, and emotionally abusing her. That was the last time Dixon Diallo saw her. “I have to find her,” she said. “Here’s a woman who’s trying to take care of herself, and at some point, that just stopped because she was in this powerless position.”
Indeed, intimate partner violence has been found to independently predict patient no-shows at doctor appointments, CD4 cell counts (a marker of immune system health) less than 200, and detectable viral loads, according to a 2012 study in the journal AIDS Patient Care STDs. And these poorer treatment outcomes can happen even if women with HIV are taking their HIV medications correctly.
Jane Leserman, professor in the Department of Psychiatry and Medicine at the University of North Carolina Chapel Hill, has spent a career studying the effect of traumatic events on health outcomes. In one study, Leserman focused on people with a lifetime experience of trauma — both IPV and other kinds of trauma, such as food instability or witnessing violence as a child. She found that even when people were on highly active antiretroviral treatment (HAART), they still had worse health outcomes and viral progression despite treatment.
“Even controlling for HAART did not affect what we saw,” she said. “In fact, the people who had more stressors and more trauma were at greater risk for mortality and had worse CD4 T cell counts.”
This all makes sense to Gina Brown, a medical case manager at Priority Health Care in Louisiana and a member of the Presidential Advisory Council on HIV/AIDS. She has seen women avoid their doctors and stop picking up their medicines under the thumb of abusive partners. She explains that the lack of self-worth that comes with repeated violence and emotional abuse can make medication-taking seem pointless. And going against the wishes of an abusive partner can be dangerous.
This leads Machtinger to conclude that anything that interferes with HIV treatment must be part of HIV care.
“The treatment cascade is awesome but it’s not sufficient,” said Machtinger, who has seen 10 patients in his HIV clinic die in the last three years — one of them from viral progression despite treatment. He believes that death, as well as the suicides, homicides and drug overdoses, are related not just to IPV but to a lifetime of traumas that have resulted in complex PTSD. “If you ask women with HIV what they hope to achieve, they want to feel safer in their lives; they want to feel less anxious. They want to work. They want to not be addicted to drugs. They want to not feel depressed. They want to have goals in their lives. They want to be the best moms they can be. We have to look at quality of life as a key aspect to the care cascade.”
Freedom and Life
Treatment for trauma and abuse — called trauma-informed care—can help stabilize the health and well-being of women after they experience violence.
Trauma-informed care is a new model of care — consisting of specific services such as therapy and assistance in getting to doctor appointments. It emphasizes the woman’s right to make decisions about her own life. It also acknowledges the power dynamic between provider and patient, and actively works to counteract power imbalances and remove any sense of hierarchy from the office.
Women who have experienced trauma have had their partners’ authority used against them. They therefore mistrust, react strongly, or shut down in the face of authority figures, even doctors, says Erin Falvey, clinical director Christie’s Place, a San Diego-based nonprofit that provides comprehensive social services to women and families living with HIV. This means that in trauma-informed care, special care is taken to remove triggers a woman might have in response to authority. Staff receive training on trauma and PTSD, learn how to talk to women about creating safety plans, and are able to refer women to trauma-related services.
Right now, the literature on trauma-informed care is extensive, but its use with women at risk of or living with HIV is in its infancy. The efforts to provide it are not yet systematic. The hope is that further research and study of this approach will yield greater uptake and implementation. Right now, Machtinger is applying for a grant to implement trauma-informed care at his clinic, with the goal of studying how this approach can improve quality of life and HIV treatment outcomes for women.
A New Freedom
It was through trauma-informed care training, which she received as a case worker for Christie’s Place, that Blount herself realized she had the flashbacks, paranoia and anxiety attacks that are a hallmark of PTSD.
“I had never known that a civilian could have PTSD,” she said.
And that’s when she started working with a therapist to make sure she addressed that trauma. Even now, if a man raises his hand in a certain way, Blount’s body reacts.
Today, Blount works to value herself first. And she offers the same to the women she serves through Christie’s Place. Many days, Blount visits women with HIV who have fallen out of treatment at home — to urge them back into care.
It seems to be paying off. Her viral load is undetectable and she’s dealing with her PTSD. She’s still learning, she said, that there’s more to abuse than just hitting. Recently, she separated from her second husband after realizing that, even though he didn’t hit her, he still exhibited controlling behavior. He was, she realizes now, manipulative, trying to keep her from seeing family and friends. It seemed like an old pattern of being isolated from her support system was emerging. So she left.
She works most on learning to love herself first — including taking her medicine every day. Some days, when she goes to take her HIV meds, she thinks, “I am so sick of taking pills every day. I just don’t want to.” That’s when she calls women friends who are also on treatment and adherent. They support each other in treatment.
“I’m 47 years old and it’s time I know — I need to know before I become old—that that feeling that you are worth more than me is not true,” she said. “I don’t want to be sick and die anymore. I’ve got more stuff to do.”
For additional information on domestic violence, consider the following resources:
- Confidential crisis intervention, safety planning, information and referrals to agencies in all 50 states
- 24-hour hotline: 1-800-799-7233
- Drop-in support, therapy, and peer-support for survivors of domestic violence in San Francisco.
- 24-hour hotline: 415-864-4722 or 877-384-3578
- Trauma-informed care and HIV services in San Diego, California
- Online resources about women, HIV and violence
- A national sexual assault online and phone hotline
- In-person support and resources for women with HIV or at risk of HIV in Atlanta, Georgia
- Support groups, health education programs, and other health services for marginalized women in New Orleans