[WARNING: This essay describes sexually explicit situations.]
In October 2011, after a fairly wild first month at the University of Leeds in England, a terrific flu felled me for a week. Just to be careful, I took myself to the doctor. To my surprise, the office called to schedule a follow-up appointment a week later.
The appointment fell just before my 20th birthday. A bald health counselor holding a clipboard called me into a side room, asking politely how I’d been. He sat me down in a chair opposite his, and broke the news to me so fast that I didn’t register what was happening: “Patrick, your blood tested positive for HIV.” Not until after I’d left the Leeds Centre for Sexual Health did I finally cry. I collapsed onto a bench beneath a large bronze statue of Hermes, God of Transitions.
I was one of 725 new patients below the age of 24 to be diagnosed with HIV in the United Kingdom that year (out of 2.5 million new infections worldwide). I know nobody else my age who is positive; naturally that left me feeling isolated, alone, and a little alien. Thanks to drug advances, there’s little chance I’ll develop AIDS. But I’ll never have the freedom of a normal life, either. What I discovered after my diagnosis is that the shame and stigma attached to HIV is far more intense than the social anxiety attached to homosexuality. We may be living in a more liberal age, but HIV-positive patients are running into the closet. Apart from a few close friends I confided in, I certainly did.
* * *
The Leeds Centre for Sexual Health is a fairly drab and dirty-looking building. The men’s waiting room, which I visit every three months, is long and narrow, with seven uncomfortable benches made from high-backed blocks of gray-laminate chipboard padded with blue wipe-clean vinyl cushions. I’ve watched idle thumbs and nervous fingers pinch and pluck small holes in these cushions until they become gaping wounds of mustard-colored sponge. Pamphlets on the wall try to be funny enough that you’d read them but scary enough that you’d change your sexual habits. One, aimed at gay men, features an orgy of naked action figurines performing explicit sex acts, accompanied by the relevant safety information under headings like “Water Sports.” (My own story is extremely rare: I was deliberately infected by a man who lied about his status beforehand and then removed his condom without my consent or knowledge. Many accusations of reckless and deliberate exposure are made, few are proven; my own suspicions were confirmed a year later when I was able to confront the man, get some evidence, and go to the police. He still escaped prosecution on a technicality.)
On one of my first attempts to tell a sexual partner, I was thrown out of a house and spat on.
Some people employ a counterintuitive, rowdy approach to dealing with this space. Younger guys in baggy jeans and tracksuits come in with friends, talking about the size of their anatomy and trading expletive-laced barbs about sexual acts to distract themselves from their anxiety. Men in suits will try to keep up the appearance of normality as they loudly proclaim into their Bluetooth headsets things like, “I’m just at the bank.” One guy seemed particularly adept at this subterfuge: “I’m just on my way to the mosque to pray.”
The most common reaction, though, is to avoid socializing. We seat ourselves as far away from one another as possible, and each new entrant tries to split the largest gap he can find down the middle. We avoid eye contact, fixing our gaze at our feet, staring through old magazines or a phone, and using hats, hoods, or sunglasses to pretend like we’re disguising ourselves. The fear is that you’ll recognize somebody from the outside—or, worse, that they’ll recognize you.
It happens. Once I saw another student with whom I’d had a one-time thing after my diagnosis. We hadn’t done anything risky, but I still panicked because I’d chosen not to reveal my status to him. As soon as I spotted him, I dashed off to some nearby benches and deliberately held my back toward him. Unfortunately, seconds later, my doctor called “Patrick” at the far door. I did a walk of shame right past him as she asked me to confirm my date of birth. (Thankfully I hadn’t lied to him about my age; he had been more curious about that question than about my HIV status.)
I panicked, thinking he’d realize that for me this visit was a regular thing. I worried he’d judge me for not having told him before. If I just had the confidence to own my HIV status 100 percent of the time, perhaps I’d have found a friend like me and broken the strange spell of anonymity and alienation here.
HIV is a hidden disease. Twenty percent of people who have been infected don’t know they have it in the U.K. alone, and they are thought to be responsible for the majority of new infections. For those diagnosed, there is no law requiring HIV disclosure, provided precautions are taken. To disclose often means to be rejected, so many keep their status secret. On one of my first attempts to tell a sexual partner, I was thrown out of a house and spat on. I still disclose often, and I always use protection; the idea of inflicting HIV on somebody else scares me more than anything. But thanks to the fear of rejection and abuse, I’m not always up front. Still, I know that our collective reluctance to discuss our diagnoses has allowed HIV to be seen as something that happens to other people.
And even at-risk people don’t care enough until it’s too late. I have had two partners, who knew about my status and requested unprotected sex anyway. One tried to convince me by saying, “If I get it I get it, that’s my fault and my problem.”
* * *
I will be on medication until the day I die. Meals and other activities are planned around when I have to take them. If you include all of the medications I take to manage side effects like nausea, diarrhea, and sleep disrupted by nightmares, I’m potentially written up for 36 pills per day. That’s not counting antibiotics I’ve needed to treat various infections that otherwise healthy people often stave off unaided. I’ve sought professional counseling for depression.
Though I’m now feeling good and coping well with my condition, I wouldn’t wish my regime of appointments or regimen of drugs (and their manifold side effects) on my worst enemy. It’s not just the physical sickness, but the constant terror of judgement and rejection for something you can’t control. Every time I hear my name called from the far door of the waiting room, I get a twinge of the tight pain I felt in my chest when I got my diagnosis. It serves as a solemn reminder to me to take my condition seriously. I don’t want others to have to join me there on the blue benches, afraid to be honest about who we really are.
This piece was written in partnership with Zocalo Public Square.