World AIDS Day: A Tale of Two Pandemics

In the time of AIDS, when condom use was necessary…

I am quoting John Ginoli, the founder of Pansy Division, the first openly gay punk band. Someone who had been at the forefront of the queercore movement in the 90s. It was on an episode of the podcast Out in the Bay that I listened to recently. It got me thinking about how much time passed between the two pandemics I’ve lived through. And how much has changed. And how little.

There was a time when I couldn’t imagine hearing something like that. The idea that condom use is no longer necessary. But things have changed so rapidly in the last few years, with the introduction of PrEP. They’ve changed in ways I never would have believed were possible. I’ve been grateful for a long time, that I never had to go through some of what my friends did.

A friend once told me that, in the eighties, not everyone even knew how AIDS was spread. He was afraid to even kiss someone because people didn’t know they couldn’t get it that way. Even people who survived experienced wrenching changes in their lives. Imagine living through such an anxiety-inducing event and being afraid to give and receive the very physical comfort that a person in that situation needs more than anything. I still cry when I hear about friends starting PrEP. Because I know what it meant to worry about people in the days before PrEP was developed.

My World AIDS Day

I kept putting off writing this World AIDS Day piece. It wasn’t a lack of stories that did it. There are a lot of people whose stories I’d like to share with you. People who aren’t here to tell their own stories. And i did try. I made a lot of false starts. I couldn’t figure out which of my stories to tell. Even looking back at some of the stories I’ve told, there are times when I still have to pause and spend thinking about how much to share.

There are certainly some stories that I want to keep to myself. Or that I’ll share only with the most intimate of confidantes. I have other stories that I’d love to tell, but they are not only my stories, and without the consent of other people, they’re not stories I should tell. What I am certain about is that the story of HIV is deeply intertwined with grief and trauma.

I know too, that in spite of the fact that I often write about grief and trauma, and I have shared some deeply personal stories of my own, there are many of my own stories about the impact of HIV in my own life that I haven’t shared.Not even when I wrote about the fortieth anniversary of the first reports of what we would eventually learn was HIV. The reality is that even as a seronegative person, HIV has cast many shadows in my own life.

It’s just hard to write about. Not because it means I have to talk about sex. That’s probably far less difficult for me than for most people. A big part of my jobs over many years involved talking about sex. And drugs. I think there are just some memories that I’m not ready to expose to the world. 

History Repeats itself: HIV and COVID

Over the last few years though, it’s been hard to ignore the parallels between the two pandemics, COVID and HIV. Particularly the early days of HIV. The parallels are so striking, I think the only reason we don’t talk about it more is that fewer and fewer people have lived through both of the two pandemics. Or if they have, they weren’t paying as close attention as I was both times. So I wasn’t surprised when my new-to-me physical therapist and I started talking about COVID, but when the conversation turned to the parallels between the early days of the HIV epidemic and COVID, I was a little surprised. I suppose my “Love is Love” t-shirt and rainbow bandana were a clue that AIDS was probably something we could talk about.

We talked a lot about living through a pandemic. I listened to him talk about what it was like to live through the eighties, to understand how lucky it was to remain HIV negative. How painful it was to see friend after friend get sick. Early in COVID, before the vaccine, it felt a lot like that. Like everything familiar was suddenly risky. Things that had been safe could now kill you. And both times, the pandemic began while a Republican president was in office. One who refused to acknowledge the gravity of the situation. Who used it as an opportunity to mock people affected by it, or who spent time othering and stigmatizing the people affected by it. 

Another odd coincidence: Anthony Fauci had been a leader in both struggles. 

Bigotry and the Two Epidemics

There is bigotry associated with both viruses. COVID was called “The Chinese virus” by the president and sometimes other people. HIV and AIDS were “a gay disease” or “the gay plague.” In both cases, that stigmatization harmed people. In the early days of COVID it meant fear, distrust or the threat of violence towards anyone whose heritage might appear to be East Asian. With HIV it meant fear, stigma, violence and discrimination towards people who were, or were suspected of being, queer. 

Both viruses had a significant impact on communities of color, especially the Black community. COVID hospitalization and death rates were higher among Black people. And HIV infection and death rates were, and continue to be higher among Black people. We could spend weeks unpacking the role of racism in medicine and barely scratch the surface. 

Children, Education, and the Two Epidemics

People have always interfered with making sure that children were protected from these viruses too. With COVID, people have been trying to prevent children from wearing masks, even though they’re an effective tool at reducing the risk of infection. And about forty percent of parents and caregivers are hesitant to vaccinate kids against COVID. Even with the long history of mRNA vaccine research. With HIV,protecting kids is more complicated. It means having to talk to kids about sex and drugs. The tremendous misinformation about what those discussions actually include and the myths that they encourages children to ignore morals and values or that they pressures children to become sexually active persist even today–forty years into the AIDS crisis. 

Communal Grief

Finally, we absolutely can’t ignore the way in both cases we were denied the opportunity for communal grief. Even if it was for different reasons. With COVID, it became unsafe to go through many of the traditional mourning rituals. With an airborne virus, gathering in groups to mourn, to support grieving people became unsafe. Even when wearing masks. With AIDS, shame and stigma meant that deaths related to AIDS were often hidden.

Picture the following scenario: a gay man lives apart from his biological family. They haven’t spoken in years. He is dying of AIDS and wants to be buried next to his partner. He has other ideas about what kind of end-of-life care he wants. But then his family–his biological family–comes back into his life. Why? Who knows. Maybe they have ideas about wanting to patch things up before the end. But what matters to the situation is that they have power of attorney over his care and what comes after. Forget being buried next to his partner. He isn’t even able to see his partner towards the end. And then they inherit his house. His grieving partner, aside from everything else, is homeless.

Obituaries were filled with euphemisms. “Survived by his longtime companion.” “Died of pneumonia.” It didn’t matter. People still knew what it meant. Even in 1992 when my German teacher died. Of pneumonia. In August.

Healing through Story

Perhaps it’s so hard to tell my own stories about my involvement with HIV because I’m still caught up in that collective grief. Because the homophobia that’s persistent in my own life, even in my own family, has never allowed me to fully process some of the experiences I’ve had, or to fully mourn some of the losses I’ve experienced. That’s thirty years of grief I’m carrying. After so many years of keeping it in, I’m not sure I would know how to share it.

Part one of a series on HIV and AIDS. To read more of the series, visit the links below:

Part 1: The AIDS Epidemic: Fortieth Anniversary
Part 2: PrEP Under Threat
Part 4: World AIDS Day: Stories