If Life With HIV is ‘Not What It Used to Be,’ What Is It?

When I traded my virginity for HIV the first Fall after High School, I was told, “HIV isn’t what it used to be.” 

At the height of the HIV/AIDS epidemic in the 80s, a diagnosis was considered a death sentence. But it has since, as my doctor assured me, become a manageable chronic illness. So, even after the traumatic experience of almost dying during seroconversion, I decided not to engage much with my new diagnosis. I told myself that it was just an isolated, inconvenient couple of weeks from which I could simply move on—aside from a lingering reminder of my mortality taken by mouth once daily with or without food.  

A decade and a year later, I found myself back in my childhood bedroom after an unplanned departure from my job coincided with the surprise, world-stopping force of the COVID-19 pandemic, leaving me with no money and no choice but to go home. The contents of my bedroom were like a time capsule: pictures from high school, a fake ID, really old weed, and stacks and stacks of notebooks. Flipping through one book, I found an entry titled “HIV Positive.” It read: “I’m eighteen, young, ambitious, and have huge plans for my life.” Throughout the entry, the line was repeated so many times that, by the end, it sounded less like an affirmation and more like a desperate attempt to convince myself. Back then, I had no blueprint for what to expect.

What I was told was true: My experience of HIV has not matched the deadly idea of HIV that most Americans are still holding on to. What it has made clear, though, is that my mixed-race, queer body is still a political one, and I don’t have much choice in the matter. According to the CDC, 16,002 Black Americans and 10,246 Latino Americans were newly diagnosed with HIV in 2018, far outpacing other racial and ethnic groups. Among those, men who have sex with men are the highest transmission group. I wonder if I even stood a chance.

Since the outbreak of AIDS in the 80s, the epidemic has been informed by politics and stigma. In 2015, then-Governor of Indiana Mike Pence opposed the recommendation to implement a needle exchange program in Scott County despite proof that it would help curb a predicted HIV outbreak, instead declaring that he would “pray on it.” Although he eventually approved the program, it was too little too late: More than 200 HIV infection cases have since been directly linked to the outbreak that Pence knowingly allowed to happen. Despite that, Trump appointed Pence to lead the country’s coronavirus response this year, citing his “phenomenal job in healthcare.”

Like the COVID-19 pandemic, the continuing AIDS crisis has mapped out the inequalities of our society, highlighting the weakness in our safety nets and the enduring prejudices of our culture. It’s brutal to be part of that map. But, as I reread my journal and reflected on the myriad creative ways HIV has complicated my life, I also stumbled upon memories I would never have had without the disease—of community, and love, and success. 

The HIV experience today is, in fact, not what it used to be. But that leaves us with the question: What is it? As the population and expected lifespan of HIV-positive people grow, more and more people are answering that question for themselves. In an effort to understand the nuances of the HIV experience today beyond my own, I spoke to three people—all queer, Black writers whose work deals with HIV—about how the disease has informed their sex life, career, and sense of community.

Interviews have been edited for length and clarity.

Brontez Purnell on Sex

“Girl, you got pregnant your first time?” author and performer Brontez Purnell asked me, before bursting into a howl of laughter that I joined in on.

Most people react to the origin story of my HIV with a look of sadness and pity. But Purnell couldn’t help but laugh at the absurdity. It was a reaction that only someone of similar experience could have, and it’s also indicative of Purnell’s approach to writing. His award-winning autofiction doesn’t shy away from the fucked-up parts of sex, life, and HIV, but under his pen we find ourselves cackling at the complex humanity of queer sex. 

Though Purnell and I are a generation apart, only a year separates our infection dates: His 2011 to my 2010. On a weekend in November, we Facetimed and talked about how PrEP changed sex, his sardonic approach to HIV anxiety, and who he writes for.

Daniel Sanchez Torres: I think a lot about how I have this weird perspective where I like raw sex. And being HIV positive, there used to be a lot of weirdness about that. Then PrEP started to become really popular and people started to understand that a person who is positive and undetectable can’t transmit the virus and it felt like there was a significant shift in my sex life. 

Brontez Purnell: There’s this new writing I’m doing where I’m talking about how the presence of PrEP erased a lot of politicality, or whatever, in the type of sex you were having. I remember 2006, 2007 I would be online and people would ask what kind of sex you want to have and I’m just like, “Yeah! I wanna get bred!” And the conversation would be like, “Oh my god, you poor child! Who led you down this dark path?” Whereas now boys are taking pictures of their loads fucking falling out screaming, “Uuuhhhm I’m a bottom whore,” and it’s just like, yeah, whatever, junior varsity! 

Haha, yes exactly. … I think this is why I like your writing, because you handle this HIV anxiety in such a sardonic way. I think maybe because I’m in that similar mindset where I get it, but also when I give your work to other people they just also feel like it’s a release of pressure.

I feel like everybody kinda wants their whole life to be this safe, sanitary, neat experience and to account for everything. And look, I don’t think I’ve ever lived a life where sex did not mean danger or coercion or so many wrong things that could happen. So I would be inclined to laugh. But don’t get it twisted, I cry a lot too. 

Do you have anyone specific in mind when you write?

I feel like I write for ghosts. To this day, I still feel like I write as if I’m holding court with this wild ass crew of faggots I knew in my 20s, here in San Francisco when I was in my peak party boy days. Those people are gone. Some of them are dead, some of them moved away, some of them moved on. So, I do feel like there is a specific group of people I’m writing for: just a bunch of disruptive faggots. But, luckily a lot of other people feel that way, so that’s why it comes across so conversational.

Any last thoughts? 

Yeah, I’m totally taking boyfriend applications right now because it’s about to be lockdown. 

Brontez Purnell can be found on Instagram @brontezpurnell where he announces his various projects. His next book 100 Boyfriends is forthcoming from MCD x FSG Originals in February 2021.

Donja R. Love on Career

Donja R. Love is a poet, playwright, and filmmaker born and raised in the “City of Brotherly Love.” In the long, drawn-out wake of the election and another impending lockdown, Love was in Jersey City feeling grateful. He’s been prioritizing himself lately: investing in community, taking a few “Black days” for himself to recover after the election, and being transparent about his boundaries.

Love and I connected over a shared feeling that the decade marker signified a shift in our relationship to our HIV. We compared notes on how we struggled through depression and substance abuse early on related to the stigma of being positive, going so far as to categorize our early years as “blurs.” But ten years is a long time, and eventually, we both needed to make choices because the HIV wasn’t going away, and neither one of us was dying soon. He slowly became more comfortable sharing his struggles and finding community, he said, but he made clear: “There are still moments where I may get sad at times, there are still moments where I get angry at times. Because it’s all a part of the process. I don’t want to make it seem like I’m getting to this moment where everything clicks and you’re completely good.”

We talked a bit about how he navigated both career and love in relation to his HIV. 

Daniel Sanchez Torres: What was that navigation like in making that jump to New York for your career, and what were you thinking about in terms of your HIV and your HIV care? 

Donja R. Love: Keeping it all the way 100, I didn’t think about it. All I cared about was moving to New York and living out my dream. The HIV specialist that I went to when I lived in Philly is an absolutely amazing individual who truly took care of me. 

The issue was, the clinic that I had to go to to see her wasn’t as amazing. It truly felt like the receptionist, the nurses, folks I had to hold space with, every time I went it felt like they were there for the money, not for the people. And it was humiliating. I stopped going for two years cause I didn’t want to have to feel that way every time I went. 

It got to a point for me where [I had to tell myself], Donja, you know you have to take your meds. You know you will not be able to live your entire life like this, or if you do, your life will not be as long as you want it to be. And knowing that I was going to move, I went back. When I got to New York with the understanding that, Okay Donja, you actually do need to like, figure something out. You need to create a plan not just for your career, but for your life as a person living with HIV. And I am now in a place where I feel affirmed with where I go and who I speak with. And I feel like I have such a good handle on my journey of living with HIV. 

You had mentioned that you had met your husband on a visit to New York while you were still living in Philly. What was it like to navigate your romantic relationship in terms of your HIV and HIV care? 

In terms of my relationship, specifically with my husband—at the time, my partner—there was a lot of work that I had to do navigating through my shame of being HIV positive. At the time, I was navigating through depression, alcoholism, suicidal ideation. So, I felt like I was a lot. It felt like every single second, I was ready for him to say, “You know what, I can’t do this anymore.” I was so ready for him to say, “I can’t do this anymore,” that I actually said it to him first and we broke up for some time and I realized it was the worst decision I made because I knew I had me a good one, and I just completely fucked it up. 

Just thinking about the shame that people living with HIV navigate through and substance abuse and what that looks like. Navigating through depression and suicidal ideation, all of those things were part of my story; and my husband and I, we had to have conversations around that. I was the first person that he knows of to be HIV positive that he’s been in a relationship with; and us having to navigate that. And him knowing that I’m not his teacher [about] HIV; him having to do the work on his own. Yes, I am your partner, but I am not your teacher. I can share things that I’m comfortable with sharing as it relates to my journey and my story. But Google was very real. And Google was very helpful. And you can hop that ass on Google to find out some information. So us having to constantly have conversations about this and [ask], what does it mean for us? I think just healthy conversation is always and has been really intricate in terms of being in a serodiscordant relationship. 

Donja R. Love can be found on Twitter @donjarlove. He has written several plays exploring the lives of black and queer people, most notably Fireflies, Sugar In Our Wounds, and One in Two. 

Darnell L. Moore on Community

I like my HIV. I wouldn’t go so far as to say I love it, but I no longer abhor the virus. That shift was a radical act of self love aided by an unexpected seroconcordant entanglement that I once described to a friend as “freedom.” The entanglement turned to heartbreak and muddied the experience in the way reluctant heartbreaks do, but it introduced the possibility of an inverse to the agonies and mundane annoyances that HIV had caused me; a space where joy could be found. 

Finding joy in relation to HIV felt inappropriate at first. It went against my internalized stigma around the disease—stigma often perpetuated by my own community in the language treating HIV as a cautionary tale and creating a divide between those who are positive and those who are negative. I shared this story with writer, activist, and podcast host Darnell L. Moore in our recent conversation. On his podcast, Being Seen, Moore clearly introduces his intentions at the top of each episode: “If we create nuanced and accurate cultural portrayals of identity and experience, we have an opportunity to reduce stigma and change perception, impacting everything from HIV to institutional inequality.” 

Though Moore is negative, he understands that, as a gay man of color, HIV is just as much his issue as it is mine. We spoke about coming together as a community. 

Darnell L. Moore: What [your story] made me think about was two moments. One of which is, I had met this amazing man, and I was just enamored by him. I was enamored by his beauty. I had a crush on him for so long. I remember, we had a moment when he came to visit me. We were sitting on my couch and he said, “I have to tell you something.” I said, “Okay, cool.” He was really nervous and kind of stumbling over his words and said, “I meant to tell you: I’m positive.” 

I said, “cool.” And I said, “I’m not, but I want to apologize for putting that burden on you, or at least you felt like you needed to open up the door to that conversation, when in fact it’s my responsibility to open that up, too. But regardless of that fact, I’m just so happy you’re sitting next to me.” And he cried. I remember, he just burst into tears. 

I’m not in a position to tell his story, but part of what I want to do is expose myself to say: so often I have been in a position where I have not been thoughtful about the role I played. Let’s call it the silent stigmatization? Me not taking in—and I’m trying to, like, even disrupt the binary [of positive and negative] as I’m talking to you, but I’m going to use it to just make a point—I never had to really show up [as HIV positive] with the pressure and the angst of having that open conversation and all the nervousness that went into that. 

Part of what I learned—and this is not in organizing, this is the shit I learned in the bedroom, what I learned in my living room—it is your job to invite people in and to alleviate the burden, knowing that you have a person sitting in front of you who you want to love, who has to carry the weight of the burden of opening up those doors. That was an illuminating moment for me. 

The only reason why I got there is because I’ve dated someone else who taught me so much—he was positive—about the access I have to safe reception, etc. by virtue of a “status” that is only a fact because we make it so. It’s what people call “social facts,” we apply a whole bunch of meanings to it. 

Someone said to me, “The way you judge a person’s politics is not what you see on the outside in the marches and shit, it’s what you see in the bedroom.” I get that.

I never wanted anyone to be sitting next to me who I love feeling as if the love that is being offered them is somehow in spite of a status. I’m like, Your presence in my life is a gift. Me loving you is not a gift. That is how stigma fucks us up. 

For the first time—ugh, now I’m about to cry. That is at the heart, for me, of why it’s so important to create the conditions to be fully human, to be loved, to experience love. It isn’t just about, What campaign or program can I be part of so that we disrupt a status? It’s about just showing up and letting people know that they are worthy of love and worthy to receive it and give it. 

Daniel Sanchez Torres: Do you ever watch medical dramas? Where they’re always like, “We don’t know what the problem is, so we’re going to inject this dye into the artery and illuminate everything.” That’s how I feel about your podcast. It illuminates everything without necessarily trying to solve the problem. But it’s saying, “Look, there’s a bundle of nerves and tension here, let’s spend some time and figure that out.” It’s complicated because I think it hinges on so many things that have nothing to do with HIV and the biology of the workings of the disease but also has everything to do with HIV and with America and the alchemy creating our situations.

As an artist, as an educator, as a thinker, as a cultural worker, as a media maker, while I am not an epidemiologist, I’m interested in the power of the narrative and the power of storytelling and the various doorways that could be presented to audiences to find themselves into conversations, into life worlds, into experiences, like you said, that have nothing to do with HIV and everything to do with HIV. 

So, we’re talking about intimacy between men, we’re talking about Christian faith and theologies and queerness, we’re talking about cultural representation. All of those things have nothing and everything to do with HIV. And I actually think it’s those routes, those avenues—let’s call it the “gray spaces”—where a lot of the healing can take place. 

Darnell L. Moore’s  most recent book is a memoir, No Ashes in The Fire. He can be found on Twitter @Moore_Darnell.