Disclosing One's HIV Status Is Still Hard, Even for People Who Work in HIV

Contributing Editor
Tim Murphy
Tim Murphy
Edwin Pabon

HIV disclosure has been a hot topic lately. First, it was revealed that the gay male dating app Grindr was making users' HIV data available to two other companies, prompting Grindr to say that it would stop doing that. (Yes, the data was linked to other info, such as emails and cell numbers, making it theoretically possible for folks at those other companies to identify who was positive.)

Then came a lawsuit alleging that CVS unintentionally disclosed the HIV status of 6,000 customers. Then another lawsuit, brought by Lambda Legal, alleged that the private outside administrator for California's AIDS Drug Assistance Program did something similar.

"This information could be used by an employer," says lawyer Scott Schoettes, Lambda Legal's HIV Project director. "Once it's out there, there's no telling whose hands it could get into and how it could be turned against them."

Now, of course, some HIV-positive people choose to go public with their status -- to unburden themselves of a secret, to help normalize HIV and fight discrimination and stigma, for some combination of the above, or perhaps for other reasons. Schoettes is one of those people. He kept his HIV status secret in law school and in his first years working at a big law firm, though he was open about being gay. Only after three years at that firm, he says, "when people knew me, and I knew it wouldn't keep people from taking me seriously as someone who wanted to make partner," did he come out at work with his status, as part of his effort to raise funds at the office for an AIDS charity bike ride.

Related: Preparing to Tell Others You're HIV Positive

Then, he says, when he came to Lambda Legal, which is solely dedicated to fighting in court for LGBTQ and HIV/AIDS legal rights, "I had to decide if I wanted my status in my bio on the website." (He did.) "As people with HIV, we're always making and remaking this decision around disclosure."

I know what Schoettes means. Although I have been writing about HIV/AIDS since 1994, I wasn't completely public about my own 2001 HIV diagnosis for many years. I didn't want to be seen as "just" a person with HIV or "just" an HIV journalist, though I admit I also feared judgment, rejection, and hurtful/uninformed remarks from family, friends, and potential hookups. But when my novel Christodora came out two years ago, with its background of the AIDS epidemic in New York City from the 1980s to the present, I decided I had to be broadly open about the role my own HIV diagnosis had played in my wanting to write the book.

Yes, I regret my HIV diagnosis -- I'm not one of those folks who thinks "everything happens for a reason," although I'll admit some good things came out of my diagnosis, such as a reevaluation of my life -- but I don't regret being public about having HIV. I want to be someone who -- in a casual, everyday way -- works against the weirdness and stigma of HIV by simply incorporating it into my life narrative.

Of course, I realize that I'm a fairly privileged white man living in the liberal bubble of New York City, surrounded by literally hundreds of friends who also live with HIV, or are on pre-exposure prophylaxis (PrEP), and hence are not freaked out by HIV. I think it's great when anyone anywhere goes public with his or her HIV status, but I would never expect it of someone. Region, race, gender, class, and vocation are but a few of the reasons why coming out as positive isn't just harder for some folks than for others -- it also presents more economic, and perhaps even physical, risk.

"HIV-related stigma and discrimination are still very prevalent, and the consequences of that can be devastating for people," says Schoettes. "It can certainly result in workplace discrimination and harassment and even possibly violence in intimate relationships. At Lambda Legal, we tell people that, in the workplace, their disclosure should be on a need-to-know basis, unless they're pretty confident" that bosses and colleagues won't react negatively, he says.

And let's not forget that in many states, people with HIV are still singled out for potential criminalization related to having sex.

TheBody talked to eight very different HIV-positive folks nationwide about why they choose not to go public with their HIV status. (And by that, we mean to disclose it broadly at work, in the community, or via traditional or social media such as Facebook. We don't mean telling intimate partners, family, or friends.) We've kept them anonymous, working out terms of identification with them that they felt comfortable with. And we've let them all know that if they ever choose to disclose publicly, they can do it here, on TheBody.

"There are lots of benefits of disclosing," says Schoettes. "Feeling like this isn't something you need to be ashamed of. It may lead to better health care. With sexual partners, frank discussions around sex can lead to better relationships. They can also help prevent HIV. Reducing stigma is easier when a critical mass of people disclose their status."