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Status stats: HIV-positive Berliners open up about using Grindr

Disclosing one's HIV status online has implications not just with data privacy but also self-esteem. SIEGESSÄULE contributor Ahmed Awadalla from Berliner AIDS-Hilfe spoke to a couple of local men who use Grindr, gathering their thoughts on sharing their status online

May 15, 2018 – You might have heard horror stories about online dating-related crimes, or how some governments use hookup apps to entrap LGBTI people, but the recent "Grindrleaks" have taken the news to a whole new dystopian level. In April, Buzzfeed reported that Grindr was providing information about users‘ info including GPS location, phone number and HIV status to advertising companies. The leak revealed that the data  was sometimes in plain text, which makes it easy to hack into. The question remains whether Grindr should be considered a private platform to disclose information about HIV or other personal info. Data and privacy are not the only questions that arise.

Ben*, a 32-year-old coat-check attendant at one of Berlin’s clubs, thinks that sharing his HIV-positive status on Grindr has definitely changed his interaction with other users. He believes, as horrible as profiling people may sound, it may have worked in his favor. "For once, I received way fewer messages from people I would not be interested anyway."

Grindr is one of the dating apps with the option of mentioning one's status as "HIV-positive, Undetectable", which might help educate those not yet aware that undetectable equals untransmittable. Sources at the German health center BzGA  reveal that only 10% of people in Germany know this fact. Ben points that HIV stigma is still alive: "People either stated that they were HIV-negative, or they just didn’t fill in that option at all. Still today, it seems most HIV-positive people don’t disclose their status on their profiles for fear of being segregated against. There’s a bunch of people out there still struggling to accept that they are HIV-positive, even in Berlin," he adds. "I know how refreshing it can feel for them to see that other people are open about it."

In another vein, a study called Love Me Tinder shows that these kinds of apps fuel body shame and poor self-image. As opposed to Ben finding comfort in being excluded for his HIV-status, John*, a Japanese-American engineer working in Berlin, reports that using the app triggers his low self-esteem: "I know i should not take it personally all these no-asians statements there are very frustrating," he says.

Another study by Time Well Spent has shown that although Grindr users use the app for as long as 71 minutes per day, 77% of them feel unhappy about it. Ben reflects on our complicity in a cycle of hurting each other. "When one is not interested, he is faced with two options: saying he’s not interested, which can be unnecessarily hurtful, or simply not answering, something that makes many people very upset."

Although Ben was upset about Grindrleaks, it wasn’t the main reason he quit Grindr. He continues to use the app, mostly when he’s outside of Berlin and doesn't have any contacts. "Humor, smell, smile, gaze, voice, laughter and demeanor play a big role in attraction – sexual or romantic – and they can be overlooked when judging from a picture and a few physical attributes," he explains. John is more ambivalent about his app use: "I keep installing and deleting the app. I feel that even though Berlin has a rich gay scene, people still are not very forward and that’s why I keep coming back."

*Names have been altered

Ahmed Awadalla



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