By Myles Helfand
Please don’t be afraid of HIV. It doesn’t deserve it, and you deserve better.
Don’t get me wrong: I’m not anti-fear. I’ve got a whole mess of fears myself – of failure, of illness, of crossing the hectic street outside my office in Manhattan. I’ve got fear pretty down pat.
Heck, it’s even healthy. Fear is one of our most fundamental human instincts. It helps keep us safe.
I even think it’s healthy to have some fear when it comes to HIV. It’s OK to fear becoming infected with HIV, and it’s OK to be scared of what HIV might do to your body if you’re positive, or to be concerned about the potential side effects of treatment.
Those fears can be good if they result in action that makes us better. If we’re appropriately afraid of becoming infected with HIV, we’ll (hopefully) learn more about how the virus is transmitted and the right ways to protect ourselves, and we’ll seek to make changes in our lives that reduce our risk. For some of us, that’ll mean using condoms or starting pre-exposure prophylaxis (PrEP). For others, it may mean leaving an abusive relationship, or challenging conditions such as poverty and lack of safe housing that put many at greater risk.
If we’re living with HIV and afraid of what comes next, we’ll (hopefully) talk to our doctors and read information on reputable websites, like the four sites who have teamed up to write this monthly column, so that we can ease that fear with information and a plan forward.
But to fear HIV itself? That’s where I think we run into problems. Fearing HIV because it exists isn’t logical: HIV itself is not some kind of cold, calculating, devious enemy that seeks to destroy us. It doesn’t care about us at all. It just wants a place to live, and we happen to be a pretty hospitable environment.
Nonetheless, a whole lot of us fear HIV itself. Maybe part of that is sheer, animal instinct, but I think much of it is learned. Over the years, an endless array of awareness campaigns has cast HIV as a villain to be conquered, as though it were some kind of inherently evil creature. We’re at war with HIV, the common refrain goes (I’m as guilty as anyone of using it), and in that life-or-death fight, the virus is the big bad.
But here’s the thing: When we see HIV as a vicious enemy, many of us – far too many – tend to start seeing HIV-positive people as enemies by extension. “Those people!” we think. “They allowed this thing to get inside them. They’ve put others at risk. They bear as much blame as the virus itself.”
When HIV-negative people become HIV positive, that fear – that judgment, that blame – needs somewhere to go. A lot of the time, it lashes out in two directions: inside, toward themselves, and outside, toward the person they think they got HIV from.
This can also be the reaction when HIV-negative people find out that a person they’ve been intimate with has HIV, even when there’s little or no risk of transmission and they remain negative.
This is how stigma happens, and when it happens, discrimination follows. It’s how people – Americans, in 2015 – get sent to prison for HIV exposure, some serving terms that are longer than sentences for voluntary manslaughter. These people didn’t share their status because they were afraid. Afraid to be judged. Afraid of the stigma. Afraid to be alone. And, in some cases, maybe at least a little afraid of themselves.
It’s a cycle that feeds on itself. We see it in too many HIV education advertisements; one recent campaign features a couple in bed, one partner facing toward us, the other sitting behind them and looking down at them, wondering, “Do I trust him (or her)?”
Screw that. Preventing HIV isn’t about whether we trust our partner. It isn’t about fearing the virus or people who live with it. Those instincts are the reason HIV continues to thrive in so much of the world, the U.S. included. Fear breeds stigma, and stigma breeds silence.
No, preventing HIV means caring about ourselves enough to understand what HIV is, how it works and what the risks are. And it’s about respecting ourselves enough to know that we’re worth the steps we can take to keep ourselves, and others, as healthy as we deserve to be.
I’m not saying it’s easy to do this, neither for us as a society nor for you and me as individuals. But we need to, or HIV will continue to hurt us in ways that go far beyond the damage it does to our bodies.
Maybe it can start with HIV education efforts that focus less on fear, and more on self-respect.
In mid-July, humanity lost a man named Bob Munk. He was diagnosed with HIV in 1987, and immediately dove into AIDS activism, which became his passion. He was a brilliant, kind, deeply caring man. One of his most enduring legacies is AIDS InfoNet, a Web-based effort he started in the early years of the Internet to create and distribute a huge array of fact sheets on HIV-related topics to as many people, in as many languages, as he could possibly manage.
These fact sheets are short, to the point, easy to understand and deeply rooted in reliable research. They say to people: “Here’s what we know. We trust you with this information. Read it, learn it and use it to make life better.”
In a world so often gripped by an obsession with using fear as an HIV prevention tool, Bob Munk opted to take the high road: education, empowerment, self-care. His fact sheets have helped countless thousands, and they push back against what sometimes feels like a relentless tide of fear, stigma and ignorance.
I think he had it right. Fear of HIV isn’t the answer and doesn’t help anyone. We need to respect ourselves, and each other, enough to ensure that we each understand HIV so that we can help one another get past it. We deserve that.