One morning late last year, I got up out of bed and shuffled to the bathroom. Standing over my toilet, I looked at myself in the bathroom mirror. It was then that I saw it. There, not too far from my belly button, was a large dark spot.
"Oh God, a lesion," I gasped. All of a sudden, images of Kaposi's sarcoma, the pictures I obsessively googled when I seroconverted, came flooding back to me. I was disgusted -- with God, the universe, humanity and myself.
"It's begun," I thought. "I'm dying of AIDS."
Then, even more startlingly, the lesion fell off my belly. It hit the tile floor and made a gentle ping. At that point, I realized it wasn't a lesion: It was a penny. A penny had gotten stuck to my body while I slept, presumably after falling out of the pocket of my shorts as I tossed and turned.
HIV/AIDS stigma is well-documented, with the focus usually on the stigma HIV-negative people have toward those of us living with HIV/AIDS. We rarely talk about the AIDS stigma held by HIV-positive folks, though. Like all other forms of stigma, AIDS stigma has its deep cultural roots in fear. And, it can be internalized to such a degree that folks might just mistake a belly penny for a lesion.
It's not just about seeing something where nothing exists, though. AIDS stigma shows itself in the emotions that it elicits, in my case, the momentary revulsion I felt at the idea of having AIDS. In fact, the more pernicious form of stigma is the one that we cannot see. It's in the language of the "clean" folks, in the assertive "third" status of those who are undetectable and in the self-destructive paths of so many HIV-positive individuals who voluntarily opt out of treatment like I once did.
It is this passive stigma that is more insidious. Unlike the active, and nearly absurdist, stigma we encounter when people wonder if they can safely shake an HIV-positive person's hand, the passive forms of stigma, particularly self-stigma, aren't always apparent.
Yet, the illusory emblem of AIDS I saw that morning, a non-existent lesion, swiftly prompted self-loathing and disgust.
The morning I saw the "lesion," I was briefly certain, even years after my seroconversion and with a higher-than-average knowledge of HIV, that I was dying of AIDS. For a large number of Americans, this will, in fact, be the inevitable consequence of poor access to health care or opting out of treatment.
Yet, I am successfully managing my HIV. I go to my doctor and get my CD4 counts and viral load monitored quarterly. I've not had one single complication ominously foretold by self-appointed experts on anonymous Internet message boards.
Why then do these thoughts linger? Why do these illusions haunt me, even briefly?
Since I was a little boy, I've been bombarded with images of gay men wasting away -- of Tom Hanks collapsing in a courtroom, of Ian McKellen discovering a Kaposi's sarcoma lesion on his ankle while working out. These are images I recall seeing in films before I even hit puberty, and during that time, the 1990s, HIV wasn't the tamable beast it is today.
These images continue today whenever folks talk about death in the absence of condoms or disingenuously put forward moralistic, self-aggrandizing political agendas in lieu of preventing HIV/AIDS. No matter how much knowledge I equip myself with and no matter how effective the scientific community proves modern treatments to be, I still have those nagging thoughts.
These images sometimes still provoke an acute, frightened response in me.
Sure, it's gotten better with time. Now, instead of wondering all day if I'm fatigued because of my status, I spend only a split second blaming my HIV status for the fact that I got less sleep the night before than I probably should have. Sometimes, though, I'm sure my immune system is failing, and that my medication has stopped working.
It never stops working. And, research indicates that it won't stop working so long as I continue to take it as prescribed.
Nonetheless, I still deal with these illusions, these specters of AIDS complications. So, again, why do I see these things that prompt my fear of doom instead of picturing a long, happy and healthy future for myself?
More to the point: Why do I, as an HIV-positive gay man, automatically think terrible things, even briefly, about my status now and then? Why can I not accept that so long as I continue treatment, I will likely suffer in no way, and I won't transmit HIV to anyone? Why is the worst-case scenario always in the back of my mind? Why won't it go away?
I suspect the answer is how we talk about HIV/AIDS or, rather, how we don't talk about it. We hear spooky language and see stigmatic imagery from well-meaning but misguided HIV prevention organizations. And, thanks to dated cultural depictions of HIV/AIDS, we as a society still view death as the inevitable consequence of HIV. It's not just society, either: Some allies and activists will not move away from these images. It's led Mark S. King to admonish those who survived the AIDS crisis to "stop bludgeoning young gay men with our AIDS tragedy."
This probably explains why many gay men avoid talking about or thinking about HIV/AIDS, too. A recent Kaiser Family Foundation study indicated that overwhelming majorities of gay men think complacency about HIV in the gay community and HIV-related stigma are contributing to the continued spread of the virus.
Yet, those same gay men admitted that they "rarely" or "never" discuss HIV with their friends, casual sex partners or long-term partners. I can't blame them: Every time the reality of HIV/AIDS for newly diagnosed people is presented publicly, we're subjected to an onslaught of bitterness and hatred by supposed allies, the HIV-negative and HIV-positive alike, in the fight. These are folks who demand that we marry our visions of the future with their despairing memories of the past. Curiously, some organizations also seem hell-bent on perpetuating the spread of HIV by criticizing pre-exposure prophylaxis (PrEP), which has been proven to be more effective than condoms at preventing HIV.
It takes a curious set of emotional knots for folks charged with HIV prevention to vociferously oppose something that prevents HIV. But, here we are.
There is another option, though. We can acknowledge a bright future for HIV-positive people while admitting the tragic past. We can still respect the memories of those lost by affirming our lives, and we can still give younger HIV-positive people hope for the future by being honest about their outlook. And, we can still work to prevent HIV while respecting the right of individuals to make informed decisions about their sex lives without judgment.
We should empower each other with knowledge; we shouldn't oppress each other with emotionally charged hogwash.
In other words, we don't need to keep scaring people.
Josh Kruger is an award-winning writer and commentator in Philadelphia. His work often focuses on HIV/AIDS, cultural stigmas and social problems. You can follow him on Twitter @jawshkruger.