How Facebook helps people with HIV shed the stigma and shame
In the era of #DeleteFacebook, the social network is proving to be a lifeline for HIV-positive people.
Claire ReillyFormer Principal Video Producer
Claire Reilly was a video host, journalist and producer covering all things space, futurism, science and culture. Whether she's covering breaking news, explaining complex science topics or exploring the weirder sides of tech culture, Claire gets to the heart of why technology matters to everyone. She's been a regular commentator on broadcast news, and in her spare time, she's a cabaret enthusiast, Simpsons aficionado and closet country music lover. She originally hails from Sydney but now calls San Francisco home.
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Webby Award Winner (Best Video Host, 2021), Webby Nominee (Podcasts, 2021), Gold Telly (Documentary Series, 2021), Silver Telly (Video Writing, 2021), W3 Award (Best Host, 2020), Australian IT Journalism Awards (Best Journalist, Best News Journalist 2017)
The first time Brian Sheldon had a sexual experience with another man, he contracted HIV.
He came out as a gay man just before his 50th birthday. He lived in the suburbs of Brisbane, on Australia's east coast, with his wife of 25 years and he had two adult kids. When he and his wife separated, he had no gay friends.
But his first gay experience changed his life forever.
At first he didn't know what was wrong. He sought medical advice, but after a year of talking to doctors, being misdiagnosed with glandular fever and generally "feeling crappy," Sheldon eventually took matters into his own hands. The qualified nurse took a sample of his own blood and sent it for testing. The positive HIV diagnosis came through just before Christmas in 2013.
Sheldon had a million questions but didn't know where to turn for answers. The GPs he worked with had little information, he couldn't get in to see a specialist until early the following year and the HIV support groups he found were closed for the holidays. So he did what many of us do when we're looking for help with a problem. He went online.
Sheldon joined The Institute of Many, a self-described "grassroots movement" for HIV-positive people. Designed as an online-first support network, TIM's central pillar is a closed Facebook group that provides a forum for HIV-positive people to talk about their condition, free from stigma, and to come to terms with their diagnosis with the support of other people living with HIV.
The group formed online, but its support networks spread into the real world. In early March, TIM members from across Australia who'd met on
marched in Sydney's Gay and Lesbian Mardi Gras Parade, Australia's version of the Pride Parade and one of the biggest gay pride events in the world.
Facebook is helping LGBTQI people around the world overcome social, physical and cultural isolation and find their tribe. And with more than 2 billion people using Facebook every month, there's a very big tribe to be found.
Around the world there are close to 37 million people living with HIV, according to UN figures. Roughly 1.8 million people contract the virus every year, and while infection rates are declining, as many as 14 percent of HIV positive people don't know they are infected.
In 2013, Sheldon was one of those people living with undiagnosed HIV. But when he was diagnosed, he was terrified.
"Not having anyone, not having any gay friends, only having my wife and kids to support me, and working in a medical center where I had access to the drug cupboard, I was very close quite a lot of times to just taking everything in the cupboard and injecting it," Sheldon says.
But five years later, Sheldon is thriving. Why? HIV is no longer a death sentence.
For those with a positive diagnosis, antiretroviral treatments can keep the virus under control, reducing the viral load in a person's body so HIV becomes both undetectable and untransmittable. Sheldon says managing his illness is now similar to managing the symptoms of other chronic conditions like diabetes.
And for people who are HIV negative, antiretroviral treatments like Pre-Exposure Prophylaxis or PrEP can reduce the risk of contracting HIV. Taken every day, similar to the way women might take the Pill to prevent an unplanned pregnancy, the medicine can reduce the risk of getting HIV by as much as 90 percent.
Growing up during the height of the AIDS epidemic -- a disease that was described in the early '80s as Gay-Related Immune Deficiency, or GRID -- it's strange to hear HIV being compared to diabetes. I remember the commercials on TV in Australia in the '90s. The worst showed a terrifying Grim Reaper knocking down AIDS victims like pins at a bowling alley -- an advertisement that has since been criticized for associating the Grim Reaper with gay men.
That stigma of HIV and AIDS has been hard to shake since the early days of the epidemic. It's a stigma Sheldon felt keenly when he was first diagnosed. But five years after his original diagnosis, it's hard to imagine the friendly, gray-haired man sitting opposite me could have felt so alone.
Your Disco Needs You
We've met in a pub in Sydney on a hot afternoon in March, just hours before the start of the Mardi Gras Parade. It's Sheldon's second Mardi Gras march (his first, last year, featured an appearance by Cher) and he's surrounded by 80 men and women in orange and blue T-shirts, all of whom will be marching alongside him to raise awareness of HIV.
Many of them are members of TIM -- people from different walks of life who met on Facebook and have now forged friendships in the real world with a goal of living a happy and healthy life with HIV. The group also includes friends and allies of TIM members who will be marching in the Parade to spread TIM's message and support loved ones living with HIV.
Tonight, they're marching under TIM's central motto of U=U -- undetectable equals untransmittable. (But because this is Mardi Gras, and Aussie LGBTQI icon Kylie Minogue will make an appearance later in the night, their float is technically titled "Your Disco Needs U=U".)
The pub is a hive of activity. There are new friends taking selfies and marchers making last-minute tweaks to costumes -- the float's sci-fi theme has translated into silver hot pants, disco-ball headbands, and enough glitter hairspray in the women's bathrooms to threaten the ozone layer.
For Sheldon, tonight is a long way from the darkness he felt when he was first diagnosed. For him, TIM has been a way to come to terms with his diagnosis and talk openly in a way he can't in the real world.
"It's just like being part of a family. There's no judgment, you can talk about anything you like, you can talk about things you do in the bedroom and no one even cares." He pauses, "So, it's better than a family, because family judges you."
It's not just about creating a safe space online. While members use the TIM group to ask questions and share advice, the group also promotes in-person catch-ups so members can socialize "outside the traditional bar scene."
"When you have your get-togethers, you'll have people coming in with problems that they didn't want to talk about on the public forum [of Facebook]," Sheldon says. "So you'll get people coming up to you saying, 'Yeah I've seen you on the site, I've got this problem with my medication, what do you think?'"
With just over 1,900 members spread across Australia, TIM has members from all walks of life -- gay men, hetero women, former injecting drug users and sex workers -- all coming together in a judgement-free space on a social network they use every day. There's also a dedicated TIM Women group that's spun off to solely support women living with HIV.
TIM was first established as an email group and website in late 2012 (the name was inspired by community worker Tim Conigrave, who worked in Sydney during the height of the HIV/AIDS epidemic in the '80s and wrote the critically acclaimed memoir, Holding the Man).
But before long, TIM founders Nic Holas and Jeff Lange realized that if they were going to create a social movement for people living with HIV, it needed to be on social media.
"The old lesson of the HIV response has always been to go where people are -- don't ask them to come to you," Holas says. "Back in the '80s and '90s, that's why people went into gay nightclubs and bathhouses with condoms and posters and information campaigns. They didn't wait for people to turn up at the town hall meetings.
"We applied that thinking to where people are today and where people spend most of their time, which is online. And Facebook was the obvious space."
It makes sense. Facebook users are already spending close to an hour a day on average on the platform. It's there when they wake up, it's there on their lunch break. Someone living with a positive diagnosis is already on Facebook talking to friends, family and work mates, so why wouldn't they talk to other people with HIV, too?
"Imagine the internet is like the real world," Holas says. "Asking people to jump over to another website to log in and engage is like asking someone to get off the train halfway home, go somewhere different and come back again. We really wanted to have a space that people could drop in and out of every day and keep in the back of their mind."
'Pull it together!'
That kind of everyday relationship with social media is second nature to Ricky Monachino, a 26-year-old call center rep from Sydney who grew up in the Facebook generation. While Facebook is facing claims that young people are abandoning its platform, TIM is giving them a reason to keep logging on.
For Monachino, TIM has been a lifeline that's helped him out of one of the darkest periods of his life.
"Pre-diagnosis I was kind of spiraling and making a lot of self-destructive choices," he says. "Post diagnosis there was about two days when I was a mess, particularly because I was going through my head with all the stigma about feeling dirty and feeling diseased.
"But then I quickly snapped myself out of it. It was two days of being a hot mess and then, 'No, Ricky, you've got to f**king pull it together!'"
Ricky is frank, friendly and immediately likable. We chat about the excitement of being in his first Mardi Gras Parade. He gives me advice on where to buy the stick-on diamantes he's wearing on his face ("They're just from Kmart!"). And he is unerringly open about his HIV journey.
He tested positive for the virus six months ago after being involved in the chemsex scene, where men take drugs such as methamphetamines to sustain extended sexual activity -- something he says is a serious problem in the gay community.
But since being a member of TIM for four months, he says he's done a "complete 180."
"TIM has been phenomenal, it's been very important in helping me to normalize and not self-stigmatize," he says.
"I've grown up in a rural area so I know what it's like being isolated from having a community around you. Being 'the only gay in the village.' So I think to have an online space that's safe and that's tailored just for you and that condition, it's something that needs to be there."
Sydney's Mardi Gras Parade started as a protest march in 1978 in solidarity with the Stonewall riots, a 1969 uprising that saw members of New York's LGBTQI community violently protesting police brutality. On that first Sydney march, 53 people were arrested.
Since then, the Parade has grown to become an internationally recognized event, equal parts protest, celebration and self-expression for the LGBTQI community and their allies.
In 2019, the Parade theme was "Fearless" -- a theme organizers said not only encouraged LGBTQI people to be fearless in telling their own stories, but to be fearless in speaking up when others can't. While Sydney turns into a veritable glitter paradise during Mardi Gras, the event's organizers know that's not the case everywhere around Australia, or around the world.
Whether it's the physical isolation of being "the only gay in the village" in a rural area, the cultural isolation of being a first-generation Australian who's just come out or even the isolation that can occur within the LGBTQI community (particularly for trans people and people of color), life isn't always glittery.
But Facebook itself says it hopes to create spaces where people can overcome that isolation.
According to Mia Garlick, head of policy for Facebook Australia, LGBTQI Facebook groups in Australia have doubled in membership in the past year as people head online to find their tribe.
"Where LGBTQI people can't find community in their everyday life, a platform like Facebook becomes a powerful place to discover similar people and create meaningful relationships," she says.
In more socially or religiously conservative countries, it can also be a lifesaver. For people who don't have easy access to HIV care and support infrastructure, a Facebook group might be the only way someone can talk openly about living with HIV.
But it's not just about connections between similar people. Garlick says Facebook has also increased LGBTQI visibility, giving people "the power to change hearts and minds."
This was particularly true during Australia's Marriage Equality debate. In 2017, the nation voted on whether federal law should be changed to allow same-sex marriage and Facebook became one of the key places where debate played out.
There's no doubt it was a dark time for many on social media, with platforms like Facebook and Twitter amplifying some of the most caustic corners of the debate. Mental health providers, in particular, saw a spike in the number of young LGBTQI people accessing their services. But Facebook also became a powerful tool for the "Yes" campaign for marriage equality (a campaign that ultimately won out, resulting in a change to the law in December 2017).
According to Adam Knobel, the digital campaign director for the Yes Equality Campaign, the movement's Facebook page reached more people than the combined readership of Australia's major newspapers.
"When you factor in that Sydney and Perth are around 4,000 kilometers apart, social media was always going to be crucial to how we would connect marriage equality campaigners across a continent," he said via email.
"We were able to promote personal, powerful stories we collected from the community on social media -- people who told us why they were voting yes and who they were voting for."
Those stories resonated. The #PostYourYes hashtag trended as people shared stories about why they wanted to get married or how the change would affect those close to them. According to Knobel, these personal connections were the game changer, because the words of friends and family members can make the most difference when it comes to big movements like marriage equality.
"It is their voices we listen to most when deciding how we feel about something or working out how to vote."
While Facebook has its share of fake profiles and fake news, it's still overwhelmingly about the real voices we find on there. It's the place we go to share information about ourselves with others we know and care about.
And for Nic Holas, that authenticity has been central to the power of TIM.
"People understand the mechanics of Facebook feeds and their profiles are them," he says. "That's really important because it encourages them to be honest and to be themselves … I am certain that we would not have grown and become as successful as we are if we'd tried to do this on a separate standalone website."
Back at the pub in Sydney, Ricky Monachino has been putting names to faces and has already made a few new friends. Later that night, he will march side-by-side with them -- men and women of all stripes that he might never have met if he hadn't joined TIM.
"Everyone kind of pulls together, we drop our baggage at the door and we just get on with it," he says.
Brian Sheldon will be at the back of the parade group, marching instead of dancing ("I'm very uncoordinated!" he says).
After Mardi Gras, he'll leave Sydney and head back north to his home in the Brisbane suburbs. He'll still have his rough days. He still has to deal with the regular illness that comes from working in a medical center with a compromised immune system, and he still has to manage the side effects of HIV.
But the parade gives him and the rest of TIM a powerful platform.
"There are so many people out there that are still so scared of it, and so we need to enlighten them," Sheldon says.
What better way to do that than by throwing on some glitter and walking side-by-side with 80 close friends that were once strangers?