Eight HIV-Positive Folks Talk (Anonymously) About Why They Stay in the HIV Closet

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Disclosing one's HIV status in the workplace or in traditional and social media can have its pros and cons. It can make us feel freer and more empowered and help reduce societal HIV stigma -- but in many places, it can still put us at risk for discrimination and emotional (even perhaps physical) harm. Here's why eight very HIV-positive folks out there in the U.S. choose not to disclose to anyone but close family, friends, and lovers -- even as some of them say they want to go public!

Transcripts have been lightly edited for clarity.

Tim Murphy has been living with HIV since 2000 and writing about HIV activism, science and treatment since 1994. He writes for and has been a staffer at POZ, and writes for the New York Times, New York Magazine, Out Magazine, The Advocate, Details and many other publications. He is also the author of the NYC AIDS-era novel Christodora.

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"S.," Female, 53, South Carolina, HIV Peer Advocate, Diagnosed 1993

Four of my five children know I'm positive, and my mom and cousin. When I was married, my husband knew. Five friends know. And I'm out at work -- I have to be; I'm an HIV peer counselor. But my siblings don't know, and I'm not out on social media or in public. I'm praying on it. My mind would love to do it, but my heart won't let me. I would love to be a world-renowned speaker about HIV, but my heart is afraid of what other people are going to say. Growing up, I had a high image of myself. I used to be a model and in the spotlight. Will people still accept me?

I have a sister and brother who would look down on me. And I know this. I'm a 23-year recovering addict. About 11 years ago, when my niece was in an abusive relationship, and I stepped up to take custody, her mom -- my sister -- told the judge that I was a crackhead to keep him from giving me the kids. And I had 12 years clean at that time. And I once heard my brother say, "I better not sleep with a certain woman because she's got 'that thing.'" And my mom tells me to keep it hush-hush. When I got tested in 1990, she even told me not to get the results.

One of my daughter's friends is my client. My daughter says to me: "I wish you would be out there open with your status because I'm tired of hearing how people stigmatize. I wanna say to people, 'Y'all better hush up because I love my mom and she's positive.'"

We do have an openly HIV-positive cousin in the family, and everyone treats her normal. But as for me coming out ... people here still call HIV "that thing." I had a close friend who was like a baby sister, and her family kept her HIV under wraps even when she got really sick. You couldn't even come to the house to see her. But of course it leaked out.

I'm single. And undetectable. With one guy, I didn't disclose but made sure he used condoms. Then, he was pressuring me for oral sex, so I disclosed. He was stunned and said he needed 48 hours to process it. But in 24 hours, he said, "I can't deal with this."

I think if I publicly disclosed, I'd have freedom. I could walk with my head held high. I'm praying to one day be able to just let the world know.

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"Elle," Female, 48, Educator, Los Angeles, Diagnosed 1994

I've told my husband and siblings and their wives and my parents and about four friends. But not my kids, who are tweens. I know I'll have that conversation with them one day, but for now, I just don't want them worrying about me.

I used to speak publicly about my HIV status -- until I got pregnant. Then we moved, and my whole world became about my family unit, and I wanted to focus my attention on nesting and having a baby. Being able to have children was a big deal for me. I just wanted to be normal for a change and forget about having HIV. In the short term, that was great, but now, I feel isolated. I wish I could let someone I work with know my daily struggle. I know that living long term with HIV has made me lose weight, but people who see me say, with jealousy, "How do you stay so skinny?" I wish I could tell them. My childbearing experience was also very different. When women talk about breastfeeding, I wish I could talk about why I didn't do that.

I think if I came out at work, it would be a big story at first and then would mellow out. But, because I work with kids, I feel like someone might run with it. I don't want to draw any attention to myself. I'm not that kind of person anymore. I don't even have a Facebook page.

But then, people say stupid stuff about HIV, and I wish I could say, "That's the wrong info." Sometimes I do, but often I do not because speaking up affects me emotionally. We had an incident in school last year where a sixth grader in sex ed said, "If I had any family member with AIDS, I would kill them." I was so upset. The teacher talked to the parent about it and told the principal, but the principal did nothing. I talked to the teacher and said, "He needs to understand that's not OK." So, there was a punishment, and he had to write something about it so he understood. But I don't think it changed him.

I miss talking about HIV publicly. I've thought about writing about it so that I'm one step removed from it -- some kind of semi-fictionalized memoir as a cathartic process. In my old life, I had lots of close friends who also had HIV, and I was in support groups with them. But in my current life? No. I'm not connected to my old life.

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"B.," Female, 47, Community Volunteer, Texas, Diagnosed 2013

My brother and sister-in-law know. Not my kids or anyone else. I would like to be more public with this because I believe that I could probably help someone in the younger generation, letting them know it's going to be fine. It's not a death sentence.

I just can't tell my family. They have high standards. I think they would be fearful of me. I could try to explain being undetectable, but I think they would perceive me negatively, see my differently. They'd ask me how I got it. They already make assumptions about me anyway. Someone told me that there was a rumor about me having HIV that my mother was spreading. I thought it was cruel that my own mother would do that. And my father once told me that I was blanking a big blank. (Editor's note: subject eventually conceded that father once said she was "fucking a big faggot.")

I want to come out publicly. But I need to start at home.

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Dan, Male, 63, Retired Banker, New Brunswick, Canada, Diagnosed 1994-1995

I tell my sexual partners, but no one in my family knows -- even my brother, who is also gay. My partner died in 2005 of leukemia, but he also had AIDS. I remember once my brother and his boyfriend saying that they had no sympathy for HIV-positive people, so I never told him about my partner or me, even though the four of us would socialize together.

I'm afraid to tell people. A childhood female friend who is more like a sister is the only person inside what I consider my family circle who knows. She told me that my sister-in-law had said at one point that if I ever got AIDS, the family would disown me. And I have to admit that, at this point in my life, it would be tough for me not to have my family, even though when my gay brother said that, I wanted to rip his head off and throw it out the window.

I retired recently. Everyone at my job knew I was gay and had a partner, but I couldn't tell them I had HIV. I blame myself for it a bit and, if I blame myself, then how could anybody else not blame me?

I recently joined HIV community pages on Facebook, but I don't chat, I just peruse. I would love to join some kind of HIV support group. It would be so nice on hard days to have someone else with HIV to share things I've gone through.

But I won't be telling my brother. My partner and I were together 17.5 years, and he was close with my family. But when he passed, not a single person in my family came to his funeral.

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Jeff, Male, 58, Pharmaceutical Executive, Austin, Texas, Diagnosed 2010

My immediate family and three of my closest friends know, but nobody in my professional life. I wouldn't put it on Facebook. I'm not ashamed of it, but I believe that in your professional life, you should be known for the job you do and not by a disease. Especially in my field, if it were known that I had HIV, then I would be "that HIV-positive manager" in the back of people's minds. There's also a lot of competition in my field, and HIV could be perceived as a weakness of mine.

There have been times when I've wanted to be more out with my status, but I also don't want to carry that weight. Yet, it's still a big portion of my life. I would love to be able to sit and talk about it with people, especially in my field. But I just don't feel comfortable. I work with a lot of big doctors, and I would hope that they would be educated on HIV. But again, I don't want them to look at me as "that person who has HIV."

I really don't think I'll become more public -- unless it were really affecting my health, and I needed to tell people. There's just too much of a stigma placed on it, and there's too much competition in my industry.

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"K.," Male, Early 30s, Doctor, U.S. Midwest, Diagnosed 2006

My husband and my close family and friends know. Before I went to med school, I worked in the HIV field and was very open about my status. When I did an AIDS bike charity ride, I rode as an openly HIV-positive person. But when I went into medicine and moved towns, I very quickly quieted down. I scrubbed my Facebook of anything saying I had HIV. None of my colleagues know. The doctor-patient relationship can be harmed by too much self-disclosure. I feel very strongly that there's a stigma in the medical community where, if I out myself as HIV positive, people would see me as a patient and not a fellow doctor.

I don't practice HIV medicine now, and I haven't been active in the HIV community here like I was before. In some ways, I feel pretty bad about it. There may be someone sitting at home thinking, "I would love to apply to med school, but I'm HIV-positive, and I don't think I can make that work," and I want to stand up and say, "Yeah, you can!" But I don't want my career impacted by that. I feel very conflicted about this.

It's just too early in my career for this. I know an openly HIV-positive pediatrician who disclosed in his bio on his webpage, and it's gone excellent for him, but he's further along in his career.

I don't do invasive surgery in my field and, yes, I know that undetectable means untransmittable, but the thought that I could infect a patient still terrifies me. And, yes, I do think people in the field would still say that I was a risk. Medicine is very conservative. I have another friend who was a surgeon and developed a seizure disorder. She was deemed a risk and had to switch to family medicine.

The stakes are just too high for me. I took on $300,000 of debt to go through medical school and would rather die than be anything but a doctor.

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Dan, Male, South Carolina, 52, General Manager For Large Hotel Group, Diagnosed 2001

The people in my life who know are my HIV-negative partner, immediate family, close friends, and a couple coworkers. Most of the rest of my coworkers know I'm gay but not [that I am] HIV positive.

The company I work for is very progressive and stresses diversity. But choosing to not disclose about HIV at work is a local issue for me. Attitudes here are very uninformed and behind the times. Even a lot of gay men don't know a lot about HIV. I'm originally from California and was living in San Francisco when I became positive, and I was very forthright in my dating. But here, it's not unusual for gay men to fear dating you because they think you're going to die.

If I did come out at work, I'm optimistic. I think it would spur a lot of questions like, "You don't look sick" and "How did it happen?" I have a friend here who's positive, [and] when he told a friend, she asked him if he'd had sex with monkeys. So, I'd be concerned that my working relationships with some people would be affected. I think they would be hesitant to touch stuff that I've used or eat food that I've prepared. But I think the majority would be supportive.

I'm not sure I want to stay in this [geographical] area because of the politics and attitudes around things like race and guns. Since I'm a manager, I can't pitch my point of view all the time and say that I think Donald Trump is an idiot. But if I am going to stay, I have to think about how to give back to the community. There are no gay support services here. World AIDS Day doesn't even make a 10-second spot on the news, so the last couple of World AIDS Days, I made a point of mentioning it in our morning workplace huddle. I'm certainly not afraid to get involved. I think the scrutiny is just something I'm not ready to handle at this point.

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"J.," Male, 39, Manhattan, Media Professional, Diagnosed 2005

I'm not entirely sure why I haven't publicly disclosed yet. I think I have some fear about how some people might react, but I'm not sure who at this point. One time I feared that people who really cared about me would be worried or sad, or that people who might employ me might think I was irresponsible -- because I associate seroconverting with a series of what I felt at the time were irresponsible choices. I'm now far enough away from it that I don't care, but I still have some lingering fear about being seen as someone who can't protect himself. Being judged as dirty? I don't really care about that.

I think that if I came out with my status, I would get more donations the next time I do an AIDS bike ride! And I think I would feel liberated. We're as sick as our secrets. It would be a public statement that I'm comfortable with the information being out there and that I refuse to feel stigmatized by it. I've made it an important part of my recovery [from substances] that I tell potential sex partners about my HIV status on apps or in person. But I also feel that now, with PrEP, most people don't give a shit anyway.