People are constantly encouraging you to “know your status.” In fact, it’s the theme for this year’s World HIV Day. It’s become one of those we’re all supposed to know, like our body mass index, carbon footprint and credit score. But what does it really mean to know your status, and how does it impact our lives?
OK, so obviously it means that it’s a good idea to know your HIV status, and this is a great resource for finding a place to get tested. But for many people that’s much easier said than done. And is it enough just to know your status, or is talking about what you uncover just as important?
For many gay men, HIV testing is one of those common experiences that has become a cultural ritual, like going to Pride, heading to the gay bar or a whiff of poppers. And testing in the United States has radically transformed over the past 30 years. When I had my first test in the early ’90s, I had to wait two full weeks for the results. Those two weeks were agonizing. I would try everything not to think about it but couldn’t stop. I would try to prepare myself for what I would do if the results came back positive. I thought I’d have it all figured out if I did end up positive. Boy, was I wrong.
In 1996 I actually did test HIV-positive, and I quickly realized that no amount of preparation would get me ready for an HIV diagnosis. I had the unique experience of testing positive right before the protease cocktail revolutionized HIV treatment, allowing everyone to live long and healthy lives. I was told I’d be lucky to have 15 years, and then within a year I was told I would likely live a long time. It was slow-motion whiplash.
That knowledge of my health, even at the darkest times, allowed me to take control. Fear was this ominous presence that hovered over me for as long as I’d known about HIV. But knowing was the best antidote to fear. Knowledge helped me determine the course of my life, whether it was five or 15 years.
Determining my life also meant taking control of my story, and I chose to be very open about living with HIV. Being out about HIV can present challenges. Many people still react out of fear and ignorance, and some are just downright hateful. But the benefits of being out far outweigh the benefits of being in the closet about my HIV. I had spent too many painful years in the closet about my sexuality, and I knew it was a place I would never go back to.
Everyone has their own relationship to HIV, and it’s a very personal choice to decide if and when to be open about it. But regardless of how open someone is, we must constantly remind people that HIV is nothing to be ashamed of. Too many people test positive and immediately feel guilty or ashamed. HIV is a virus that people get, and not because they did anything wrong or are a bad person.
Talking openly about HIV is itself a demonstration that there’s nothing to be ashamed of. People living with HIV are not cautionary tales but instead are examples of the diverse lives we can live and the various options available to someone if they test positive. The more we share our experiences with HIV, the more we can expand the modern narrative of living with HIV.
The landscape of HIV has radically changed, and for some it can be hard to know what it all means. “Undetectability” means that people living with HIV can live long and healthy lives, and being undetectable means it’s impossible to transmit the virus. PrEP is the daily HIV prevention pill that is highly effective and allows gay men to take control of their sexual health. In addition to that, there are all sorts of new prevention and treatment options in the pipeline that will further change the epidemic.
The world is rapidly changing, but the one constant in the past 30 years has been HIV testing and how important it is to know your status. Knowledge of your HIV status it not just a reflex or a ritual; it’s power. It’s the power to combat fear and shame, and it’s a vital piece of information that helps you know who you are as you take action around your health.