Queer people living with HIV aren't just statistics

Text by Jordan J. Edwards*, published on the website of LGBTQ Nation (United States) on February 5, 2025. Freely translated by the gionata Project Volunteers.

HIV, to me, has never been just a statistic. It has never been something distant, an abstract concern or a faceless condition, as it is for so many people. It was never just a subplot in a movie.

He was never an invisible monster used to scare. It has always been real, personal, concrete, deeply intertwined with my life as a black, sexually fluid man living in the Bible Belt of the United States.

My first encounter with HIV marked my entire existence. As a child in the early 2000s, I watched a family member die from complications related to AIDS. A few years later, I found myself having a long conversation with a close friend to dissuade him from taking his own life after receiving an HIV-positive diagnosis.

Between these two moments, I saw countless other people face the fear of the test, self-isolate out of shame, nurture the idea that this disease, so real, should remain shrouded in silence for fear of what others would think or of becoming “just another statistic.”

So many people in my life and in my communities were more concerned about how this disease would pigeonhole them, classify them by their skin color, sexual orientation, or where they lived, ultimately reducing them to a number. Seeing it happen was devastating.

Queste esperienze mi hanno fatto capire una cosa con chiarezza: l’HIV è qui, nelle nostre case, nelle nostre famiglie, nelle nostre comunità. Non può essere nascosto sotto il tappeto o chiuso in soffitta insieme ai segreti di famiglia. Deve avere un posto a tavola, deve diventare un tema di cui si parla apertamente, se vogliamo davvero togliere forza allo stigma e restituire potere alle persone che ne fanno esperienza. Se vogliamo porre fine all’epidemia, dobbiamo riconoscere l’umanità che c’è dietro il virus. Il valore di una persona non diminuisce a causa del suo stato sierologico, del suo corpo o della sua sessualità. La sua storia, con tutta la sua unicità e complessità, merita dignità.

La mia storia personale è cambiata per sempre nel 2013, e continuerò a raccontarla a voce alta. Tre parole hanno risuonato nella mia testa per settimane dopo averle sentite: “tu sei positivo”. A più di dieci anni di distanza posso dire che, anche se ci viene detto che una diagnosi di HIV è una fine, per me è stata l’inizio di qualcosa di nuovo. Sì, è stato spaventoso e difficile, ma alla fine mi ha dato uno scopo profondo.

Il mio stato sierologico mi ha insegnato un’empatia autentica e un amore più grande per me stesso. Mi ha permesso di camminare accanto ad altre persone della mia comunità, non solo sopravvivendo, ma vivendo pienamente. Ha rafforzato il mio impegno per la giustizia e mi ha reso un sostenitore migliore.

It also gave me incredible experiences, (…). It led me to tell my story and (…) to meet extraordinary people who are working to build a future without stigma. (…)

But ending HIV isn't just about raising awareness one day a year or repeating alarming statistics. It means rolling up our sleeves and dismantling the inequalities that continue to fuel health disparities.

It means addressing systemic racism, homophobia and stigma. It means addressing poverty, underfunded health systems and lack of access to education in black communities. It means creating equity, not just equality, in access to HIV testing, prevention and treatment.

(..) I invite you to reflect on the role that each of us is called to play, whatever our race or sexuality. HIV affects everyone. There is no “us” versus “them”.

The fight to end this epidemic is a collective responsibility, and it will not be won with small isolated gestures or simplistic solutions. It requires courage: the courage to have difficult conversations, to act decisively, to build systems that put humanity at the center.

If you are living with HIV, know this: You are not alone and you are not defined by your diagnosis. Go forward one breath at a time. If you are a person who supports or defends the rights of others, keep fighting. And to anyone who is looking for small ways to create big change, I say: keep the conversation alive.

Only in this way will our stories not be told through statistics, but through our voices. We will talk about our experiences, our moments of human connection and empathy, our vulnerability and our courage. We are the ones who tell the story, break the mold, and build a new tomorrow.

*Jordan J. Edwards is deputy director of the Normal Anomaly Initiative's BQ+ Center for Liberation. She works alongside the Black queer community to increase sustainable employment opportunities and access to care services for people living with HIV and those interested in PrEP. He writes and speaks for various American newspapers such as Advocate, VoyageHouston and Outsmart.

Original text: The stories of Black queer people with HIV cannot be told in statistics