Strength Permeates the Stories of People With HIV
Nationally recognized as the City of Medicine, Durham, North Carolina, provides a unique environment in which discuss HIV and HIV cure research. Not only are Durham and the Research Triangle home to cutting-edge cure research, the city also ranks ninth highest in the country for AIDS-related deaths.
Over the summer, as a part of the 2BeatHIV project, we met with five people living with HIV from different cities, cultural backgrounds and life experiences. We talked about their perspectives on living with HIV and their thoughts about HIV cure research. We used Photovoice as a discussion method, encouraging participants to bring photos to every session as a way to inspire stories and advice. The four main themes that emerged from our discussions were resilience, empowerment, faith and support -- and the stories that brought these themes to light need to be heard.
Valuable Takeaways From Individual Experiences
Our first meeting was on a hot May morning. We crowded into a stuffy library, amidst books and humid air. The low drone of a box fan that hummed in the background insulated our space. CAARE, Inc. -- an aptly named, holistic health non-profit -- kindly hosted our meetings. At first, everyone was shy; the only thing connecting them was HIV. However, we built rapport quickly over apple juice and granola bars. In the weeks to come, the most valuable takeaways were embedded in their individual experiences and advice for others, living with HIV or not.
Joel, a formerly incarcerated, recovering addict, has been living with HIV for nine years and had only told two people his HIV-positive status before the project. Shame didn't dictate his privacy, he said, he just wasn't "big on throwing it out there." Joel explained that people misconstrue HIV. He said living with HIV is just that: something to live with. He said, "If you're human, you've got to live with something." Joel's advice: Build yourself up, and remember you're not dying of HIV; you're living with it.
Michael, a middle-aged disabled man, has served as a leading activist for people living with HIV for nearly 30 years. As soon as he rolled in, his presence often commanded the room; his experience permeated every story he told. Most of his work has been trying to deconstruct HIV-related stigma and push younger and newly infected people to "keep going no matter what ... and make the best of it." He often told the other participants to not let HIV get in the way of aspirations, saying, "You can buy a house; you can be a doctor; you can be a lawyer; you can be anything."
Tommy, an aspiring chef in his early 20s, brought a youthful and inspiring perspective to conversation: He said he'd been "fortunate," and he associated that with being a part of a younger, more accepting generation. He recalled telling his best friend after he was diagnosed. She told him: "You're gonna be OK. You're going to eat healthy and work out, and you're going to be happy, and you're going to be OK." He said that people living with HIV had to find the right kind of social support. For him, he found more support from close friends than family. Whether it requires finding the right support group or setting boundaries with those who are unhelpful, he said it was necessary to "find the best people for you."
As A Young Woman, What Struck Me Most
As a young woman, I was most struck by Debra and Angel. Both have histories of sexual violence and abuse, and they have fought racism, sexism and HIV stigma for decades. Their layered traumas are not uncommon: Black women are disproportionately affected by intimate partner violence and HIV/AIDS compared with women of other racial or ethnic groups. When talking about mental health, Angel spoke of the resilience she's harnessed. She described developing an impenetrable exterior to combat depression and stigma, "trying not to let anything tear [her] down." When they spoke, the room felt thick with emotion, as though pieces of pain and resilience clung to the humid air, entering you with every inhalation. "Life isn't easy for anyone," Debra said, "This is just another battle; you have no choice but to overcome."
Their strength permeates their stories. Since their diagnoses, both Angel and Debra have empowered themselves and others by owning their experiences. They are dedicated to speaking about their HIV experiences in support groups, schools and events such as the AIDS 2016 conference and fashion shows. Both credit much of their determination to self-acceptance and faith. Debra explained that she relies solely on her medicine, "faith in God and faith in [herself]." She is currently developing a one-woman screenplay to raise HIV awareness and encourage safe sex practices. As Angel put it, "I have to make a difference with this disease ... I have to spread the word. I have to de-stigmatize."
For people not living with HIV, Angel said this: "Stop making us walk on eggshells." All people living with HIV should be able to speak freely about their experiences without fear of being marginalized or discriminated against, she said.
This is a critical time to broadcast HIV-positive voices. As humans, we have something to celebrate. Large scientific and technological advancements in HIV-related research over the last decade have allowed people living with HIV to live long, productive lives. But while scientific innovations continue to evolve, people with HIV are still devalued, ignored and disenfranchised. So, what can we -- researchers, community members, friends, loved ones -- do? Humanize HIV. As a culture, we must stop separating ourselves from the disease and the people living with it. Empower people with HIV, respect their voices and learn from their expertise.
Samantha Farley is a student and researcher from Chapel Hill, NC. She works as a part of 2BeatHIV, a research group out of UNC Chapel Hill dedicated to creating ethical and culturally sensitive HIV cure research practices and empowering community members to raise their voice about HIV and HIV cure research. Samantha is currently studying Health Policy and Management at the Gillings School of Global Public Health. To learn more: @2BeatHIV.