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Where It All Began: HIV, Stigma, and the Stories We Were Told
- Aug 6
- 6 min read
Updated: Sep 3
by Rynn Myles
When I think about the beginning of the HIV epidemic, I don't think first about the virus. I think about the people. The ones whose names were whispered behind closed doors. The ones whose obituaries were shorter than they deserved. The ones whose stories were distorted by fear, moral judgment, and a media machine that fed the world more panic than truth.
I think about the ones who showed up for each other when the systems in place abandoned them. The ones who took care of their friends' bodies when funeral homes refused. The ones who dared to speak the word "HIV" out loud when it was considered shameful, when saying it could cost you your family, your job, your life.
The story of HIV is not just a medical one. It's deeply human. It's political. It's racialized. It's shaped by who society chooses to care for and who it chooses to discard.
What HIV Is (And What It Isn't)
Let’s ground this conversation in clarity. HIV, or Human Immunodeficiency Virus, is a virus that affects the immune system. Without treatment, HIV can lead to AIDS (Acquired Immune Deficiency Syndrome), the most advanced stage of the virus, where the immune system becomes severely compromised. But thanks to modern medicine and decades of advocacy, people living with HIV who have access to treatment can and do live long, full lives. For many, HIV is a manageable chronic condition. HIV is not a punishment. It is not a moral indictment. It is not exclusive to any gender, race, sexuality, religion, or lifestyle. And yet, the stigma that grew in its earliest days still paints it that way.
What Stigma Is and How It Works
Stigma is a set of attitudes and systems that create distance between people and the care, compassion, and respect they deserve. HIV-related stigma can show up in healthcare, at work, in family systems, and in how society talks about relationships, risk, and responsibility. It can affect whether someone feels safe getting tested. It can influence how someone is treated after sharing their status. It can cause hesitation in seeking care or accessing medication. It can be deeply isolating.
And while stigma is something we all inherit, it’s also something we can all unlearn. The work starts with recognizing that stigma thrives in silence and every time we choose connection and understanding over fear, we’re chipping away at it.
The Inception of an Epidemic, and the Creation of a Villain
When the first cases of what would later be named AIDS were reported in the early 1980s, fear spread faster than information. The CDC documented clusters of rare illnesses among gay men in cities like Los Angeles and New York. The media dubbed it a "gay plague." Many politicians ignored it, while others actively worsened the crisis through inaction or inflammatory rhetoric.
President Ronald Reagan didn’t publicly acknowledge the epidemic until years into its devastation. Meanwhile, public health officials like Dr. Anthony Fauci began pushing for more research and resources, though systemic barriers slowed progress. Public health systems faltered, underfunded and overwhelmed.
Instead of compassion, the epidemic was met with condemnation. People didn’t just fear HIV. They feared the people living with it. Gay men, Black folks, trans women, people who use drugs, and sex workers were scapegoated and blamed. Mainstream media, churches, and government agencies created a narrative where HIV wasn’t just a virus. It was a symbol of sin, deviance, and criminality. And for many, that narrative stuck.
Who Was Left Behind
People tend to forget that the early public image of HIV centered cisgender white gay men. That’s not because they were the only ones affected. It’s because they had more access to visibility, to media, to funding, and to advocacy platforms. Meanwhile, Black and Brown people living with HIV were dying in silence. Trans women were left out of data. Women were excluded from clinical trials. People who used drugs were criminalized instead of cared for. The communities that carried the heaviest burden of HIV also carried the weight of stigma, poverty, racism, and gender-based violence. And they still do.
HIV Today: The Legacy of Then, the Reality of Now
We’ve come a long way in terms of science. But the same can’t be said for public perception. Even now, stigma continues to thrive in subtle and not-so-subtle ways. People still equate HIV with irresponsibility. They still hesitate to date someone living with HIV. They still whisper instead of talk.
Today we also have access to prevention tools like PrEP (pre-exposure prophylaxis), a medication that can reduce the risk of acquiring HIV by over 99% when taken consistently. In my opinion, if you are sexually active, use injectable recreational drugs, or share needles, I believe it’s worth looking into PrEP if you are interested.
We also know that someone with HIV who is undetectable cannot transmit the virus to their sexual partners (a fact known as U=U). And yet, this message hasn’t reached everyone—largely due to the same stigma that has long shaped how HIV is discussed.
To fully understand the weight of stigma today, we have to talk about intersectionality. Coined by Kimberlé Crenshaw, intersectionality is the idea that people experience oppression in overlapping ways based on their identities.
Someone living with HIV who is also Black, trans, undocumented, a sex worker, or disabled does not experience stigma the same way as a white, cisgender, insured gay man with access to a doctor who affirms his existence. These layers matter. They shape who gets access to care. Who is believed. Who is criminalized. Who is funded. Who is seen.
In the United States, HIV continues to disproportionately affect Black and Brown communities, particularly in the South. According to the CDC, Black Americans make up approximately 40% of people living with HIV, despite being only 13% of the population. Black gay and bisexual men, Black women, and Black trans women are among the most impacted. The South carries the highest burden of new HIV transmissions, largely due to systemic racism, poverty, limited healthcare access, and anti-LGBTQ+ legislation. This is not a coincidence. This is the result of layered neglect and stigma.
So Where Do We Go From Here?
We start by telling the truth. The truth about the past and about the systems that continue to fail us. The truth about how even within the HIV movement, certain people and narratives are centered while others are erased.
We cannot end stigma by simply encouraging people to be "nice" or "inclusive." We have to uproot the respectability politics built into our prevention and care frameworks. The ones that reward those who are "on meds," "disclosed," or "doing everything right," while quietly stigmatizing those who aren't, or can't, or won't.
We have to stop building systems that only work if you’re white, cisgender, gay, insured, and already in the room. Because most of the people who need the system aren’t.
What Comes Next
In the next blog post, I want to dig into the ways our HIV prevention frameworks are still rooted in respectability. I want to ask hard questions about who gets celebrated, who gets funded, and who gets criminalized.
Why do we still treat disclosure like a moral badge? Why are people praised for being "compliant" instead of being supported holistically? And why are we still using a white, cis, gay male template to design programs meant to serve the entire community?
These questions are uncomfortable. But they are necessary. And I’m committed to asking them with love, with honesty, and with the full humanity of people living with HIV at the center.
Because this isn’t just a virus. This is a mirror. And it's time we take a good, hard look.
Let’s keep unlearning. Let’s keep speaking. Let’s keep making space for every story.
This blog is part of our HIV stigma education program PUSH (People Understanding Stigma and HIV). If you want to dive deeper into HIV stigma, check out PUSH and register for our FREE live webinar (offered monthly)!
References and Resources
Gilead COMPASS-
Southern AIDS Coalition-
Centers for Disease Control and Prevention (CDC) – HIV Basics
UNAIDS Global Reports
TheBody.com – Community and educational HIV content
Positive Women’s Network - USA
Prevention Access Campaign – U=U Movement
ACT UP Oral History Project
HIV Justice Worldwide
AVAC Global Advocacy for HIV Prevention
Crenshaw, Kimberlé. "Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color"
