Each December 1, World AIDS Day places the epidemic in the global spotlight. This year, we wanted to look at one of the most persistent challenges people living with HIV face: stigma.
Stigma simply refers to the negative attitudes and beliefs (often erroneous ones) about people living with HIV. In short, it’s prejudice. And it can be deadly. Because of stigma, many folks are afraid to get tested. Some skip their meds and doctor’s appointments. Stigma can keep you from reaching your fullest and happiest potential in other way too. Maybe you have been given plastic utensils at a family function or been ghosted by a potential love interest after disclosing your status. Perhaps a physician or coworker treated you differently because you are HIV positive.
You’re not alone. We asked members of our POZ Personals community to share their stories about HIV stigma and explain its lasting outcome—for example, whether the experience changed their viewpoint or imparted some wisdom. Below is an edited selection of stories that pertain to dating and hooking up. (To read stories regarding so-called friends and health-care professionals, click here; for another look at dating while HIV positive, click here.) Some of these people use their real names; others prefer their screen names or initials—because of, you guessed it, stigma. Every one of them offers a story of strength. Even when faced with unfair discrimination, these people with HIV remain resilient.
Story “I can’t tell you how many times I’ve chatted with someone and have gotten dumped—and in one instance blocked—once my HIV status was disclosed. I’ve been HIV positive since 1989. I’m undetectable, and dating is almost impossible. For all the hype about educating people about the disease, people are still pretty ignorant. And by ‘people,’ I mean the gay community. My coworkers have been much more supportive than any potential lovers. It’s a lonely life.”
Outcome “I’m still single, but my support came from the most unexpected of places. I was once told that [in life] we’re given what we need more often than what we want. It has been easier to disclose my status to straight people than to gay friends. Thirty years ago, when I tested poz, it was my straight friends who helped me get through the initial shock. HIV has been my invisible pink triangle. As many doors as it’s closed, it’s also opened a great many more.”
Story “I’ve met two people this past year, and I did not tell them of my HIV status at first (and no I didn’t have sex with either of them). I wanted them to get to know me as a person and not define me by my HIV status. As things went on with both parties, I decided to let them know of my status. One of them had no idea what undetectable meant, so I tried to explain. His response was, ‘I don’t know much about HIV,’ and he quickly became a top whereas he was a bottom, as if this would prevent him from contracting HIV. It frustrated me that a gay man would have no idea what PrEP was [pre-exposure prophylaxis, the daily pill to prevent getting HIV] and what undetectable was [meaning that a person with HIV who maintains an undetectable viral load cannot transmit HIV]. The second guy, once I told him, he claimed he was fine with it, but I never heard a word back whatsoever but see him online often. People should be more educated about HIV, especially if they are actively having sex.”
Outcome “How I dealt with it was to inform people—not that it mattered. People in Richmond have not a clue how to deal with an undetectable person, let alone want to listen to what you have to say. I ignore ignorance in my community. I just don’t worry about it and pray one day that they will not become positive. And if they do, hopefully they’ll look back and tell themselves, ‘I should have listened to that man.’”
Story “I was diagnosed in 1999, but even as recently as in the last decade, the number of times I have been asked my status [before sex] or the other party suggested we use condoms has been less than a dozen! As recently as three years ago, I actually had a date—not for sex, but a date. It went well, and he invited me to stay, so I was forced to have ‘the conversation’ with him. I started out by telling him I was undetectable. Keep in mind, this is a 50-year-old college-educated guy who had been in the gay world since his divorce 20 years ago. He asked me what undetectable meant. After I defined it for him, he asked, ‘So what stage of AIDS do you have?’
I am so tired of explaining and defining and then being made to feel like I’m less than. Twice in the past decade, it was insinuated that I was the reason someone contracted HIV, when I know my status has always been undetectable and my list of ‘trick-or-treaters’ has been minimal compared to the two people who made the insinuation—but I was the only one up front and honest about my status at the start. A lot of times, I have disclosed and then the other person says, ‘Oh, I am too!’ And I’m thinking, ‘Now if I had not disclosed my status, would they have brought up theirs?’”
Outcome “Unfortunately, every time feels like the first time, reliving the experience all over again. It really gets tiresome. I go through spells and don’t put myself out there and just immerse myself in work so that I don’t have time to think about the fact that I don’t have a love life. And I think it’s worse when you live in small or rural areas. I [suggest you] do what I’ve always done: Be honest to the point that you can live with yourself, even if that means living alone. Turning to either prescribed or non-prescribed drugs only masks the situation—it’s better to deal with it up front and honestly, you’ll have a clear conscious and mind—in case someone special comes along, and I’m still hoping for one more great love in my life!”
Story “Date No. 1: I went on a casual date to a carnival. Spent several hours. I disclosed my status. I was advised that was not an issue for him. When I went to give him a peck on the lips, he turned his cheek. He told me he won’t kiss an HIV-positive guy on the lips.
Date No. 2: I was part of a social group for several years. There was a guy close to my age I was very interested in for about eight months. Finally spent some private time after going to a diner for a bite. There was some sexual interest. I advised him at that point of my status. He told me it wasn’t an issue. The next time I met him at a social, I asked him out for a real date. He advised me that he thought about the situation and really couldn’t handle it.”
Outcome “I really never got over it. I just moved on until I finally met someone who said it didn’t matter—and his actions proved to me it didn’t matter. When I would go out on a date, I would not reveal my status up front. By the second date, you can tell whether you would like to see that person again. Step out and state what you have to say. It’s better to disclose then because you haven’t invested your entire heart if things don’t continue. Do not wait too long to reveal your status. The person will see you as being evasive, and the issue of trust may be in jeopardy rather quickly.”
Story “In October 2017, my doctor called me and gave me the news that I was HIV positive over the phone, while I hosted a house full of people. I immediately went to my husband and BFF, Bob, and shared my test results. On the surface, he said the right things, but subtle stigma and falsehoods quickly came to his lips. One of the first and last things that Bob told me was that we would never have sex again without condoms. He visibly shuddered when I sneezed or nicked my skin—anything that would introduce him to my body fluids. Nothing I know could have prepared me for his shame-inducing words and behaviors.”
Outcome “Knowing that the only way to fight stigma is to educate yourself and others, I spent the first weeks [after my diagnosis] researching, studying and duplicating everything I found out and summarizing it for Bob’s benefit. He never read one [thing]. He remains uneducated to date. PrEP was never discussed (he’s negative) before I left him two months later. People made a point to let me know that how my husband made me feel was not how the rest of the world sees me. Instead, I have met very kind, open-hearted people who have hurried to help me with any and everything I’ve needed.”