By Danny Carroll
On silence, stigma, and the unnecessary trauma of a modern HIV diagnosis
I want to talk to you about trauma. About authenticity and privacy. About the nature of silence and the way it corrupts growth and progress. But allow me to state something I have never stated in a public forum. I am HIV positive. I have been since October of 2011; most of my 20’s.
I have an undetectable viral load. If you’re unfamiliar with the term, it means I am not sick. My immune system is in control, aided by modern antiretroviral therapy. It means I am not infectious. The lack of viable, active virus in my system makes it near impossible to pass the virus by any means. I am not a danger to myself, I am not a danger to anyone else – and by the grace of my society my greatest burdens are the cost of my healthcare and the responsibility to take a dose of medicine every day. I am, by nearly every measure, just like a person without HIV. So why then, if I have little to fear from the virus, have I kept it so private? The reason is at once both understandable and also wrong. I have not been kept in the closet by any direct assault of stigma. I have not been rejected by my family or my peer group, nor do I see any danger of that happening. I have not been scorned by lovers; most gay men I meet are aware of the lack of danger inherent in being undetectable. Instead I have carried an insidious stigma born from within, cultivated by the things most privileged and prejudicial about my character. I have trickled my story out to those who needed to know, my immediate family, my closest friends, but to everyone else, my story of the last five years has been the typical narrative of a person buckling under the pressures of budding adulthood. I had an opportunity to soothe my own trauma and support the wide net of my community by living in the light of authenticity, and instead picked the shadows of fear-based self-preservation. I am not here to tell anyone how to live, or how or when to disclose, but I have come to judge my own silence as cowardice, and by analyzing how a person like myself, who values humanity and honesty, may have come to remain in the HIV closet, perhaps I may be able to dissuade you from the same. Now, more than ever, we must be prepared to fight a public battle against ignorance, to be visible and unafraid; let me convince you of that, if you are willing, as atonement for my own unnecessary silence.
I was a wreck the day I was diagnosed. I felt side-swiped and ambushed. I was not expecting this, not even a hunch that I might have been exposed. I hadn’t had a very active sex-life since my last relationship at the time and was near certain that what I had was just a bad case of mono. And when I got the news, I wept like a child. I punched an examination table in frustration, dislocating a bone in my hand. My face was red, tear and snot covered, and now my hand was bandaged. I made one call that morning to the only gay man in my extended family. He dropped his work for the day and came immediately. Held his face in his hands when he heard the news. Comforted me the best he could. He had lived through the plague. He had already buried many friends. He must have felt in some ways, through his natural compassion, that I was something of a fool to find myself where I was, considering what had come before me. And still yet, he continued to aid in the struggle by fielding the right questions to the doctor, by taking me by the shoulders and leading me across Chelsea to the Spencer Cox Center. There I passed a waiting room full of people who averted their eyes (as I would do now, embarrassed for someone’s uneducated grief) and lead by a series of deeply empathetic staff to a room where I finally managed a bout of stunned silence. That’s where Buddy, the supervising nurse, sat with me, and after my blood had been drawn, plans for my treatment laid out, psychiatric evaluations scheduled, he took the time to just talk to me.
“This is nobody’s business but yours,” Buddy told me, leaning in seriously to be sure my red and bloodshot eyes were seeing his, “you control who knows, and when. Most people just…want to get on with their lives.” On that day these words were helpful; not exactly freeing, but they stopped my sobbing long enough to let me consider my options, of which I thought I had none. I had skipped classes after that early morning doctors visit, missed deadlines that day, and was inching closer towards having to cancel the first reading for my graduate thesis script at The New School, an act that would have required some sort of explanation, some sort of indication that I was dealing with something world-altering and serious. But Buddy was out to remind me of one simple fact: life goes on. It goes on normally, with a few changes to my routine, and a big change to my sense of identity, but beyond that I could be myself still. This was what he was trying to help me understand. I didn’t need to cancel plans, I didn’t need to cancel my education, I didn’t need to take the machinery of my life and grind it to a halt. Why make a big deal out of something that is simply not the danger it used to be? At that hour, in that room, I was still ignorant enough to think I was going to somehow feel this. That I was going be somehow ailing for the rest of my life. That I’d be sick. Even though I had learned over and over again that people with HIV could now live “normal healthy lives”, that always sounded euphemistic; somehow not the whole truth. I know now that was what Buddy was trying to convey, trying to help me see that I didn’t need to be afraid, but nobody with the dearth of knowledge I had on the subject could be persuaded to do anything more than panic. And panic I did. I took his message as license to hide. I wasn’t equipped to hear him. So I took the anti-anxieties they gave me, and after nearly six hours of panic, put on a plastic expression and went to my reading. It went well. My peers knew something had happened, my hand was bandaged, but all I could stammer were vague explanations about family issues. The writer’s voice was not alive in the room that night, not this writer’s at least.
I was a stranger to tragedy at the time, and in many ways still am. In my MFA classes, we were routinely expected to essentially share our root inspirational pain, the thing that compelled us to make Art, with a capital A. Others shared experiences with abusive family, death, and hearts broken by prejudice; I explained that I wrote plays because it was the only thing I ever got attention for. This was in 2010 and at 22 I was one of the babies of the class. I had an easy life with easy anxieties, perfectly primed to overreact to the specter of chronic illness. And in October 2011, I was suddenly handed a nice, well-polished cross to bear, and I wanted nothing of it. The joyful voice that preferred plays about robots and nihilism shut like a trap, but the voice educated in the skills for expressing emotional truth, emotional pain, trauma, never spoke at all. It never wanted to. I didn’t want this. I both avoided it and obsessed over it as a result. 2012 was a milestone year for the fight against HIV, but I wouldn't have known it, as sorry as I was feeling for myself. While I wallowed, the breakthroughs that could have given me confidence were being made, the arrival of PeP and PreP on the scene, the initiation of the PARTNER studies that would prove once and for all that Undetectable=Uninfectious, I could have studied these things, thrown myself into the constituency that would have shared these things with me, but I had decided to line my world with pot and video games while I waited for the ground to stop spinning. My work ethic for my graduate thesis vanished, I had done four full revisions in the month before my diagnosis, half a revision in the following 5 months. My affections for the mysterious, the strange, the macabre that came across in the writing I loved to create, all collapsed and withered under the weight of my grief for the person I thought I had been. The doctors, nurses, psychiatrists that came at me like a bombardment offered every bit of wisdom they could, explained how normal life could be… but my world didn’t know; I had no contextual awareness. My education was complete with nouns and bereft of nuance, so how could I have understood? If, in 2012, they were telling me I had no need to be afraid, then why was I so traumatized?
Prejudice. Pure and simply put. My prejudice became fear. It was a strange irony, a queer justice. I ran the “Artists Fighting Aids” benefit for my undergraduate college one year, dressed in drag and sang “Don’t Use Your Penis for a Brain” deigning to teach a concept I had barely absorbed. I promise you, I was under the impression that I would know HIV was around me if and when it was. I wasn’t interested in hookup culture or one night stands, but still couldn’t see how getting to know someone and THEN having unprotected sex with them was still not much of a prophylactic. The stigma that sits in the air of our society, that sat inside of me, kept aloft by old narratives and white privilege, the stigma I sustained that had been gestated innocently, was now turning inward. All those years of unconsciously believing that HIV would always be far away, or at least would be close enough that I’d know it when I saw it, finally came for their comeuppance. In retrospect I can see that I truly believed there was a type of person who caught HIV, whether I wore that belief on the outside or not, and it was that certainty that shattered me in the end. If I WAS that type of person, did I really know myself at all? Fact was, I did. I knew myself. But I didn’t know this illness, didn’t know it well enough to keep it from consuming my identity with boogeyman ease.
Although I can blame much of this on my own failure to learn, I reserve a great deal of resentment for the zeitgeist, for my society writ large, that became bored of the HIV protagonist once the narrative arcs ceased ending in tragedy. The modern experience of life with the disease has faded into the background, reserved for those who need to know, or care to know. There’s no tragic cultural urgency, and there hasn’t really been since people stopped dying in droves, so the color of my understanding was painted in pre-95 shades. How could I have known that the acute symptoms I experienced were a godsend? For me, the swollen lymph nodes seemed harbingers of the worst kind of sickly future, but they were marks in the sand where the meds could dig in. Truvada and Isentress within 2 days of diagnosis, two months later, zero viral load. Unheard of just a few years ago, miraculous numbers and speeds compared to the plague years. But still I lost weight from stress, from identity crisis, from ego death (not the fun kind). I couldn't count my blessings because I didn't know, I hadn’t read, I hadn't seen. My fables were the dramas, the weeping literature, the RENTs and the ANGELs and the NORMAL HEARTs, I was fitting right in as the broken protagonist. The gaunt, pale AIDS artist at the window, sadly watering his plants. That felt right to me. But that was absurd. Any real survivor could conjure a bitter laugh at the pastiche I had constructed, at the wallowing self-pity. To make matters worse, the tiny little voice that wondered if maybe I might have something now to contribute to the larger conversation on HIV/AIDs, something real and relevant, was routinely quashed. HIV was a tired subject, according to the entertainment world.
In the months post-graduation, I took one meeting with a talent agency. After being pressed about what I had plans for next, and floundering with my answers, the meeting abruptly ended when I brought up an interest in HIV/AIDs as a subject matter. “There’s not really an interest in those stories” was what I was told, with an air of embarrassment. GREAT, I thought, deep in student loan debt with looming healthcare costs, couldn’t the universe throw me a marketable trauma? So I closed down that shop. Stopped learning for a time, until the pain was too strong. As I mentioned before, the partner study to prove that individuals with an undetectable viral load are near 0% likely to sexually transmit the virus had just begun in the years around my diagnosis, and people had already suspected this since undetectable became a way of life. The whole of HIV identity was in rapid evolution, but in my hovel of an apartment I remained red-eyed and nightmarish, thinking on all the ways I could waste away or make some other fatal, irreparable mistake. I gained little solace from learning I could not transmit the virus. I was slave to my grief over something pampered, something false, something that should have been exorcised out of me anyway. I had encountered a toothless tragedy and I had let its implications damage me with quicker ease than the virus ever could.
I must argue that an HIV diagnosis simply does not need to be as traumatic as it still manages to be. It did not need to be for me, it does not need to be for the newly diagnosed. Sure, it should be an anxiety, it’s still a deadly disease if left unchecked. But it does not mean anything about the likely trajectory of a person’s life or the content of a person’s character. And that is the greatest revelation I had, even though it had been near shouted at me by my therapist and all the comforting materials she gave me. I was in the closet, all this time, because of what I thought having HIV would say about me. And this is not an excuse. That realization alone proved that I had never listened to the lessons I had been taught. That understanding should have been innate, should have been instantaneous, but it was not; that is stigma. The longer we wallow in fear for our identity, the harder it becomes for the people who truly need support and attention to get the attention they desperately need, namely the long term survivors still dealing with the aftermath of their battle with the virus, and the unprivileged multitudes in this country without access to the healthcare programs necessary to allow them to easily do what I, and many more, have done. We need to change the logline. Our message is stilted: we tell the people who have already caught the virus, already seroconverted, that they’ll be fine, and yet revile the idea of telling a healthy person that they’ll be fine if they catch HIV. The “no big deal” problem. The urgency of prevention is still painted with the idea that HIV is the most awful thing you could catch, which is a simple and effective message, I understand that, much more simple than the idea that prevention is about the wider arc of the virus and creating a human barrier to corral and control the pandemic. We throw so much attention at personal prevention that when prevention fails it feels like a loss, like a major failure of character rather than an encounter with a monumental force of nature. Should it then be any surprise that our newly diagnosed still suffer such massive depressions with that sort of message circling our culture? People are still doubtful that I am healthy, that a person with HIV can qualify perfectly as such. More so than that, the average person I tell about my status is ASTOUNDED to learn that it is near impossible for me to transmit the virus. There's always some variation on "that can't be right" or the kind of flicker in their sight that tells me they're going to Google it themselves later, whenever I tell a new person what undetectable really means, the freedom it represents. There will be that moment, that pause. Cognitive dissonance. I get it, I felt it too. I’m still somewhat shocked that I’m going to be fine. This is a problem. It’s 2016. We should be certain by now.
Part of me has always known that I need to be open about my experience, Because through all of this waffling, I merely trickled out the confession, but I didn’t seek help, I didn’t communicate with my society. I shuttered the windows of honesty and saved my hyperbolic truths for my closest friends. I waited a year to tell mom and dad and it had to pried out of me. Sure, it would be a journey one way or another, but why so arduous, so goddamn time consuming? Why such a destruction of my confidence? The antianxieties and antidepressants? At the end of the day, no reason for staying silent stands up to any line of scrutiny, and so I can only conclude that I have been a coward. I have let the potentials of small discomforts, ignorant glances and momentarily awkward pauses work together to stifle my authenticity. More than that, however, more than how I have been untrue to myself, I have been untrue to my society. If I have a voice, and I believe that I do, why have I not raised it to save myself, and to express to the world at large that the ones like me are not outliers occupied by a permanent state of duress, but rather men and women on the other side of trauma, like so many living humans are. People like me continue to allow a somber tone to surround our lives, when instead our very existence should stand as a gleaming testament to the human ability to overcome and surpass monumental odds. We ought to be symbols of progress; a natural goodness. I propose that a successful grappling with HIV should be a rousing cause for conversation, not something left for narrow windows where it is applicable and polite. The initial trauma, the encounter, is of course still cause for sympathy, support, but only as long as the fight to normalcy remains. I am not suggesting pride at the outset, but rather as the reward for having taken the necessary steps to assure your health and the health of your community, that the testing and the treatment have followed through to a state of control and safety. That should be where the sense of pride comes from, and where I believe it already does, in quiet, polite corners. There can be a sense of mistakes corrected, so why are we so tentative to speak in terms of absolution? Excused from this wide net are of course the shouters, those who have always ACTed UP, who now find themselves screaming the facts hoarse at unblinking screens, if anything I'm just parroting the intersecting points they've been astutely making the whole time I've been grappling with this strange adolescence.
More than anything I regret what I have failed to provide for the next person like me who comes along, who has every reason to live his life out loud, who has all the support and love he needs, and yet, because men like me fail to come forward to illuminate the life that can be lived, he is left in the dark and the silence, succumbing to the most unnecessary sadness, allowing his passions to wither and confidence to die. We have to understand that this narrative is happening in real time, and if we leave these roles only to the old soldiers who saw a darker day with no way to hide or remain private, who can see the whole of the journey so far, who deserve a break from carrying us, then the newly diagnosed, the new faces in the fight, will continue to remain isolated and will slow the progress we have made to normalize this illness.
I apologize for never writing about it. I apologize for not seeking peers. I apologize for missing the group meetings, the ACT UP meetings, the private meetings with long-time friends where I could have easily just said something. I apologize for not marrying my actions to my knowledge. You don’t need to accept this apology. You don’t need to validate or deny it. The truth remains that I should have done this a long time ago. Because I am well now. I have kept my head above water. My introspection is no longer damaged, I am myself again, and so I rise happily to combat those things beyond the medical scope of my situation that conspired to drive me unnecessarily to the depths of self-pity. I am left to imagine again, with a sense of wonder and joy, what our shared recovery from our encounter with this biological force will beget for the future, and what that means for our universal battle against the ravages of disease. I’m excited by this exposure because I want so desperately to talk about it. Do not let my general tone divert you – my regret for how I personally handled this is one thing in my own life is not my dominant approach to the subject. The act of penning this very essay is a demonstration that fear becomes hope, and we should be emboldened to share that transformation. I have simply chosen to begin that sharing with atonement for years wasted.
And so, on this World AIDS Day, in the shadow of a presidency that leaves much to fear, I speak up today solely that I might be counted amongst you, ready to continue the fight with the talents and means at my disposal. If you’re reading this and want desperately to do the same, take my word for it, now is the time.
Danny Carroll is a writer and actor based out of New York City. He can be contacted at danny@stfortune.com.