I Have HIV, But It’s Stigma That Makes Me Sick
Previously published on Bustle.
Four years ago, at the age of 28, I was diagnosed with HIV. I am a heterosexual, white woman and I grew up in the suburbs. I never stuck a needle in my arm, and I was never a sex worker. I just slept with men, and sometimes I didn’t use a condom — and I got HIV.
That’s it. That’s the whole story.
Except that it’s not the whole story. Because saying “HIV,” at least in certain circles, is like saying “Bloody Mary” three times into a mirror late at night at sleep-away camp. It conjures up a lot of fear, the kind that makes everyone squeal and run away to the safety of their sleeping bags, for no reason at all.
Because there’s nothing to be afraid of. There is more stigma surrounding HIV than there is knowledge about what it actually means to be HIV positive right now, in 2016. In the United States, at least, HIV is no longer a death sentence for most people. Because of the AIDS crisis in the late ’80s and ’90s, we’ve come a long way in HIV treatment. Every time I swallow my big, green pill, I give thanks to activists who waged an unpopular battle when I was still in diapers.
I’m not that scared about my health. I’m very scared about what you’ll think of me.
I’m positive and undetectable. Undetectable means that the viral load — or the amount of the actual HIV virus in my blood — is barely there. It’s very likely that I couldn’t transmit the virus to anyone, even without a condom. I don’t make a lot of money, but I can afford the one pill I take every day, because I am also lucky enough to live in New York, where ADAP, or the AIDS Drugs Assistance Program, is awell funded, legislative priority. In a lot of states, that’s not the case, even though every state has one.
To so many people, “HIV” means “gay men,” since the AIDS epidemic in America initially affected mostly gay men. And when it was a crisis, too many looked away, because they believed that gay lives didn’t matter. We still look away from other parts of the world, where HIV is still deadly — and we even look away in America, where one in two gay black men will get the virus, according to the Centers for Disease Control. But thinking that the virus only affects the LGBTQ community, the drug addicted, or poor people of color in our backyards or across an ocean is wrong. Very, very wrong.
When I was diagnosed, I told pretty much no one, not even my family, because I was ashamed. I felt dirty. I didn’t want my parents to know that their honor roll, J.Crew-wearing, golden daughter had H.I.V. And the nights after I was diagnosed, I said it like that in my head before I went to sleep, with in-my-brain- italics, whispered even under my own breath: H.I.V.
I didn’t think it could happen to me, because I am a straight white woman and grew up in a house with an actual white picket fence. But HIV doesn’t stick to demographic stereotypes. HIV is closer than most people think.
I hear people in my social circles call it “The HIV.” Like it’s a punchline, something from Africa, something nasty they think they can catch from a “trashy girl” — not the initials of something they should ask their doctor about. These are supposedly educated, socially conscious people, the kind who use canvas tote bags for groceries and tweet about politics. Yet I’ve heard variants of “if you use the toilet there, you’ll get AIDS!” more times than I can count.
In the summer of 2016, I finally decided to tell my parents about my status. When they started to cry, I reassured them, “I’m not telling you because I’m ‘sick,’ I’m telling you because I want to stop hating myself and hiding from it.” They nodded politely. They were confused and scared, even as I explained what “undetectable” meant and walked them through the last, very secret, years of my life.
My mother, who only has some of her brain function after a massive stroke, said, “It would be worse if you had breast cancer, then, right?” She shifted in her wheelchair. “It’s not bad news, it’s bad-ish news, but good-ish news,” she smiled and squeezed my hand. Even she knows you can’t get HIV from a toilet seat.
My parents were mostly shocked that I had been handling “it” on my own, hiding something so big. But the only thing I had really been handling was the stigma and emotional blowback of having something I didn’t feel I could talk about.
Because in my experience, the most dangerous thing about HIV is the stigma. We know how to test for the virus, prevent it, and treat it.Yet my diagnosis led to severe depression. One of the first things a social worker asked me at Planned Parenthood, after confirming my rapid HIV test with another blood test, was, “Do you think you might hurt yourself, knowing what you know?” Even she couldn’t really say HIV out loud more than once.
She clicked her pen over a checklist she probably had to submit to the Department of Health or something, and it took me a minute to understand what she was really asking. I laughed and said, “I mean, does drinking two bottles of rosé by myself tonight count?”
There was an awkward silence, another pen click, and I realized I should reassure her since I wanted to just get the hell out of there. “I’m joking, no, I mean, I’m not, I am going to drink a lot of wine, but that’s about it,” I said. I smiled and tried my best not to cry in her plastic chair.
It worked. She had me sign another form, give her any names of men I had slept with recently so the DOH could call them, like pest control alerting the neighbors to a local rodent problem, and slipped me the card of a clinic that “deals with this.” Again, not saying the dirty word. It sounds a little cold, but she did (thank you, Planned Parenthood) call me over the next few days to check in with me and confirm I had made a follow-up appointment.
Later, I understood why asking about my mental health and checking in was part of the diagnosis procedure. Depression, substance abuse, and suicide are more common in HIV patients. In the first year after my diagnosis, I traveled to some pretty dark places in my head and did think of suicide, on multiple occasions. On really bad days, I still toss the idea around. It’s stigma that kills us more than anything else.
The stigma of HIV eats you up from the inside. You can feel it in your bones every time you meet someone new, or talk to people who love you — or even just a random friend, or worse, a boss, when you have to tell some stupid lie because you can’t go to the beach or work one morning because you have to go to the doctor and get your blood work done or refill your prescription at a special pharmacy on the other side of town and it takes five hours more than a regular doctor’s appointment would to do all of that. Didn’t you just go to the doctor? How the hell do you pay for health insurance as a freelance writer? someone inevitably asks.
You turn into a very good liar.
There are small lies and big lies. Skipping out of work early is a small lie. Here’s a big one: about two years ago, I met a guy, we had instant chemistry, and went home together. It was the first time I’d experienced anything like that, with anyone, since my diagnosis. When I woke up in the morning, I couldn’t remember if I had told him in passing the night before, because I was drinking myself to sleep every night at the time, trying to escape my own body. I couldn’t see how to bring it up over a bagel on his couch. I barely ate or slept for weeks because I liked him and he liked me, too, and he was obviously going to be a part of my life. I sat on the edge of my bed every time he sent a flirty text and wondered how to bring it up. Not because I was worried I “gave it” to him, but because “it” had made me a liar, and the truth was so simple that it seemed ridiculous I hadn’t just said anything. And what if he was one of those people who thought you could get HIV from a toilet seat? What would he do?
I have lied about tons of little things in my life, but this one was big. This one compounded into the hate I felt for myself, warped my face in the mirror, and made it so every show of affection felt like another betrayal. I am a germ and a dirty little liar, I thought, every time he sweetly kissed my forehead.
I told him nearly two months later and he barely flinched. In fact, surprisingly, he smiled, hugged me, and we talked about it like adults. It was a first for me, to have someone say HIV over a dinner table, listen to me complain about having to fax forms to ADAP, watch me take my medicine in the morning after breakfast. We dated seriously for a year, but the initial deception followed me and the relationship all around, like that Pig Pen character from Peanuts who has that cloud of dirt around him all the time. We broke up for a lot of reasons that all sort of boiled down to me not having dealt with my shame yet.
Because stigma is a dirty little Gremlin — it’s snarky and taunting and mean and if you listen to stigma, it will take over you and everyone you touch. The shame turns into a beast and possesses you. The shame lends itself to some sort of twisted pride. Stigma isolates you like an abusive partner.
Oh, of course you don’t want me. I’m infected. You don’t even know. You can’t know. Because I won’t even be able to tell you. This is why HIV patients are at a greater risk for depression and addiction.
I was, am, lucky enough to have lifted myself up from that. I go to therapy and lean on friends. I’m not a walking germ. HIV isn’t my dirty little secret anymore. Now I tell people.
Now, when I go out and a guy starts flirting with me, I tell him that I’m HIV positive. I know how to work it into conversation, always calculating. It’s tiresome. Some men nod and walk away while I’m still talking. Some buy a last round and peace out politely. One guy said it was fine and a week later he sent me (literally) hundreds of violent text messages, scared, saying I gave him AIDS. I sent him Google Maps of testing centers and asked to see his test results. He shut up eventually, testing negative, but not before calling me “the filth of the earth.” One pushed me into a snowbank this winter when I told him after kissing him and my nose bled into the snow in the middle of Brooklyn and it was then, walking home alone, that I thought it was maybe better to never say anything ever again at all, because feeding the Gremlin was easier and didn’t make my face hurt.
But screw that. I’m sick of lying and feeling lonely. As a heterosexual white woman from suburbia, our society doesn’t usually make people like me feel lonely and isolated. I’m acutely aware of my privilege. I used to think, because I had no one in my life who understood, because the virus disproportionately affects people I admittedly don’t really know and am connected to merely because of the virus, that I had no place in the fight. But I do. We all have a place in this fight, for a cure, against stigma.
I am not the face of HIV and that’s the problem. I hate how people’s faces change when I tell them: women, men, friends, lovers, colleagues, parents. It’s fear and pity and confusion in one furrowed brow. There’s a reason why when I tell people in my demographic, their faces go pale. A whole lot of people have a whole lot of unprotected sex. But there are still too many people who know nothing about the current reality of HIV. My mom was right, like moms usually are. Breast cancer would be easier to deal with.
If we talked about HIV even half as much as we do about breast cancer, we could change the culture of HIV stigma. I feel strange every time I hear someone talk about their aunt and her heroic struggle with breast cancer, marching with her team of supporters. Or watch NFL games where the players wear pink Nikes on national television for a month, for all to see, like a collective hug. Where are the red Jordans for HIV/AIDS? Where’s our collective hug?
We are surprisingly far along in HIV/AIDS research, despite everything, than we are with any other disease. When I was in first grade, the HIV/AIDS epidemic was real. I’m 32 and taking one pill a day, no side effects, can’t transmit it, and can even have a healthy child, in my own HIV infected uterus if I wanted one. That’s science and research and progress. And awareness.
There are 1.2 million people living with HIV in the U.S. There’s an estimated 12 percent of Americans who don’t know their status, according to the CDC. I know my my status. Do you know yours? Most new infections occur between the ages of 13–24. We can stop those with education targeted at everyone, not just certain communities. We don’t have to whisper about HIV.
Having sex with me isn’t a risk. But having sex with someone who never thought to ask for an HIV test is very dangerous.
When I was diagnosed, I felt like an anomaly. I’m sick of the well-meaning nurse at my clinic acting surprised that I’m scared of needles, because she assumes I used to shoot up. I’m sick of bad and hard to find information on the Internet. I’m sick of hearing straight, educated, 30-something men groan before using a condom.
I’m not sick from HIV. I’m sick of lying and feeling alone when I don’t have to. I’m sick of not being able to talk about my experience because HIV is not something one talks about in polite company. It’s real, it’s certainly scary, but it’s a problem we know how to take care of. If we start talking about it.