Living with HIV can come with its own unique mental health challenges, particularly as it relates to stigma. Stigma is a form of discrimination against people with specific characteristics and is often based upon erroneous biases. And stigma can also take the form of self-stigma, or the way in which a person who is discriminated against can internalize that outward stigma and shape the way they view themselves, which can impact their own behavior and thinking. The ways this self-stigma appears can include ambivalent feelings towards sex and self-hatred, such as internalized homophobia. With HIV, stigma often manifests through the flawed rationale that simply living with the virus means that one is at fault.
What is important for people living with HIV (PLWH) to remember is that all people are worthy of love, respect, dignity, and support regardless of their status—whether they are seropositive, seronegative, undetectable, out of treatment, or seeking access. But arriving at this understanding can take a great deal of work and self-interrogation, especially for anyone who feels traumatized by their diagnosis.
“Receiving an HIV diagnosis can be traumatizing for many people because it represents a loss of the life that they once knew,” says Nathaniel Currie, DSW, LCSW, a psychotherapist, social worker and assistant professor of social work at Clark Atlanta University (see How monkeypox has triggered social anxieties and historical fears - page 2). “And it’s important for people living with HIV to acknowledge that change is important, if only to recognize that things will be a little different than they were before and to work on moving forward, towards their new life.”
'Without healing myself, there is no me.'
For Donja R. Love, the award-winning Afro-Queer playwright who bears his HIV status openly, that work did not happen overnight. He admits that while coming to terms with his diagnosis, he struggled with depression as well as a dependency on alcohol. What helped him return to a sense of worthiness was having a strong support system of friends and family as well as the realization that writing can be therapeutic.
Stories about PLWH rarely appear on television, in movies, or in plays. And even when stories about HIV are included, they are often stigmatizing, filled with gross misinformation, or used as lazy plot twists to create scandal and disgust—rarely to educate or to make PLWH full human beings (TV shows such as Law & Order and Tyler Perry’s films have long been critiqued for their stereotypical HIV storylines). While in the midst of his own career as a successful playwright who focused on the stories of queer romance between Black people during different points in history, Love decided to correct that imbalance by focusing on how he came to terms with his diagnosis.
Originally, Love was inspired while contemplating the then-upcoming tenth anniversary of his diagnosis. At the time, he says that he was gripped with feelings of depression even though he had overcome so much and was thriving.
“I still had some healing to do,” he says.
Without knowing why he was doing it, Love says that he pulled out his iPhone and began to write a play on his Notes app. The result, one in two, premiered Off-Broadway in the fall of 2019, produced by The New Group at the Signature Theatre. The title one in two refers to the Centers for Disease Control and Prevention’s (CDC) oft-cited 2018 statistic that if current diagnosis trends continue, one in two Black men who have sex with men will acquire HIV in their lifetime.
Rather than focus entirely on that upsetting figure, Love decided to show audiences how it might look to process an HIV diagnosis and slowly decide that there is life after seroconversion. This included aspects of Love’s own story—seeking treatment, engaging with family, overcoming a dependency on alcohol, and being open to receiving love.
Since one in two’s successful premiere, it has been staged across the country as an encore digital production featuring the original cast, and was streamed globally as part of Playbill.com’s Pride Plays series.
Love has always been honest with the fact that he writes “to save my own life. Because without healing myself, there is no me.” Writing his own “salvation into existence and representing the community of Black Queer HIV-positive folks” has helped Love realize that he can share that joy with others. He started to do so in 2020 by creating an ongoing, fully funded fellowship for writers who are living with HIV called Write It Out!, followed by a cash prize for one distinguished playwright—the first of its kind.
Write It Out! is now in its third year and has created a diverse community of supportive writers with HIV—some of whom had never written a play prior to joining the program but who have gone on to be published and begin writing careers. By spreading the love, Love has not only helped himself but created a network of writers whom he believes will “write stories that honor our community and show the world and each other that we are more than our trauma, that we are worthy and whole.”
Since discovering his status, writer and composer Jerome A. Parker had been wary of being known as “an HIV-positive artist.” He says that when he became a member of the second cohort of Write It Out! in 2021, he was fearful of what that would mean not only for his art, but for himself.
“It was one of the most frightening challenges because I had never confronted what it means to live with HIV,” says Parker. “Previously, I was always trying to hide it.”
Meeting a community that understood where he was coming from helped him see that he was not alone and that there was more to him than living with HIV.
‘It is not enough to show how we live; I have to show that we can thrive as well’
“Part of the beauty of being in Write It Out!,” he says, “is that it took me from a place of isolation and into a community that was very diverse in how we processed our feelings and supported each other, while figuring out that HIV does not define who we are.”
Helping PLWH to see that they are more than a health condition is an ongoing passion for Love. In March, The New Group presented his digital theatre series, i need space. Love wrote and directed the piece to show how a group of PLWH were processing their depression during the forced isolation periods of the COVID pandemic.
“I needed my community to see that they would make it through COVID-19, even though it felt like the rest of the world had forgotten about us,” Love says.
In his most recent work, the critically acclaimed New York Times Critic’s Pick, soft, Love expanded that perspective by focusing not only on HIV, but on suicide and the structural barriers that expose so many Black men to dire health conditions. By putting onstage the real life circumstances that many Black people face on a daily basis, Love was following the edict of his spiritual mentor Joseph Beam—that “visibility is survival.” He was also creating a roadmap for overcoming those outcomes.
“It is not enough to show how we live; I have to show that we can thrive as well,” Love says. “Because we do. Even if the world likes to ignore it. But in my work, the community sees it and hopefully sets that as their new standard instead of the cough-cough trauma porn that we usually get. Because we are more and we deserve more. And seeing us with more gives me so much light.”
Writing to ‘remind myself that I’m here choosing life’
Love is not alone in believing this. One creative who has been inspired by Love’s bravery in sharing his status with the world is the award-winning composer and theatre-maker Troy Anthony. In June, while talking to the blog site Theatrely about The Revival, a Black and queer-led, community healing choral movement that is being presented and sponsored by The Shed, Anthony says, “I don’t want Donja to feel like he’s the only one out there when there are so many of us who are living with HIV.”
After sharing his status in the blog, Anthony revealed that doing so had been freeing and healing, and had opened up many conversations. He compared the healing that came from no longer hiding his status to the spiritual rejuvenation that he feels from writing.
“By healing ourselves, we also put a stop to inherited collective trauma, and heal our ancestors as well,” says Anthony.
He noted that he came to this realization after receiving a spiritual reading, during which he was told that “you have ancestors who had to stay quiet about who they were. Who couldn’t rock the boat. But you don’t have to do that.”
Hearing that message instilled in Anthony what he calls “a responsibility to undo generational curses by breaking the silence.” His most recent work, Champs, a musical set at a roller-skating rink in his native Louisville, Kentucky, has evolved from “writing to be seen” into “choosing to love yourself over loving toxic people, and learning how to be in a relationship with someone else who’s also healing from trauma.”
“I had to give my family the opportunity to learn how to love me,” he says.
After years of hiding his sexuality, some of his family did not take well to learning the truth, though in time, they came to know him more fully. For him, that meant tapping into grace for himself, his own need to hide, and his family’s need to grow.
Living through this growth has helped him to focus on creating stories that would not have been available to him as a child and going beyond plays like Angels in America or The Normal Heart, and their focus on white people overcoming the challenges of queerness. Anthony says that he has been inspired by the now iconic documentary on ballroom culture, Paris Is Burning, and its Black and Brown queer subjects to ask, “what is possible?”
During a recent workshop of Champs at The 5th Avenue Theatre in Seattle, Anthony immersed himself further in possibility by listening to a community of Black queer elders about the play. The elders addressed a queer elder character in the musical and encouraged Anthony to go deeper—they explained that during the ’80s and ’90s, when the musical is set, there was already a thriving community of Black queer folks living in Kentucky. Anthony realized that he didn’t know this because their stories had not been preserved. Learning about them has given him the spark to honor them, if not in Champs, then in a future project.
Far from feeling overwhelmed by the prospect of writing another musical that digs into the not-as-well-known history of Black queer men in Kentucky, Anthony says that he is inspired to do so. One reason is to avert the tragedy of loneliness that hurt one of his dearest friends, Darius Smith, the musical director of the first musical he ever wrote.
In 2019, Smith died from AIDS-related complications after he rejected treatment because he believed that “AIDS is God’s punishment for my being gay.” Smith’s death inspired numerous aspects of Michael R. Jackson’s Pulitzer Prize- and Tony Award-winning Broadway musical A Strange Loop, as well as its stigma-busting song, “AIDS is God’s Punishment.”
Smith’s death was difficult for many people to process, especially after they learned about the shame that he was dealing with. Rather than give into that stigma, Anthony says that he writes if only to “remind myself that I’m here choosing life and to understand how scary it was at different times to live with HIV. Even two years ago for Darius, who thought he should let the disease ravage him because he had so much shame. When I think about him and others, I’m motivated to get back to the work and get back to healing.”
Part of that work has included addressing his self-stigma and serophobia. He says that “it wasn’t until I received my diagnosis that I realized how much stigma I had.” After receiving his diagnosis, he said his first thought was, “Oh, how could that be? I don’t sleep around.”
That helped him to confront the judgment that he’d been carrying about what others who were living with HIV must have done to acquire it.
Through writing, he has learned to break through those judgments and embrace the same grace for himself that he tries to give others.
For both Love and Anthony, a central question in the origin stories of their work as writers living with HIV could be, “who is worthy of grace?” This question inspired each to write their thoughts down, creating characters and worlds where the audience is led to confront the question in themselves, just as it has led Love and Anthony to a world of healing for themselves that they could not have previously imagined.
That process of self-discovery, healing, and self-love is something they want for all people living with HIV—not only to help the world to see all the greatness that lives throughout the community, but for the community itself to recognize that even if their stories do not become award-winning plays, they are still beautiful and deserving
Juan Michael Porter II, (he, him) is a Black queer man living with HIV. He has written for TheBody.com, PBS American Masters, the San Francisco Chronicle, the Christian Science Monitor, Playbill, and the New York Observer. He is a National Critics Institute and Poynter Power of Diverse Voices Fellow.