Coming Out Of Virtual HIV: What Are The Problems?

A qualitative study

This study was conducted by Dr. Steven Philpot and his team at the Kirby Institute University in Sydney (Australia) and published in the Health Journal Sociology of Health and Disease before they are taken over by aidsmap. This is a qualitative study of interviews conducted with five Australian men who are HIV positive, gay or bisexual. The participants were all white. The mean age was 33 years (26 to 50 years). English was their first language and they all had university level education and had no difficulty in accessing care and treatment. In addition, all participants had an undetectable viral load and reassurance that public disclosure of their HIV status would not have a significant impact on their daily lives.

When asked by Seronet, Dr. Steven Philpot that the lack of diversity in the profiles obtained is one of the limitations of the study: “The participants cited in the review had very good HIV monitoring and an undetectable viral load. They were also active members of the community of people living with HIV, participating in political activism and HIV associations.” The researcher explains that it is more difficult to reach people who are further away from care and associations: “A lot of people feel are not as comfortable with their HIV status as our participants and are less likely to use social media to promote their HIV status. What about non-white people? “In Australia, the HIV epidemic is now affecting foreign-born gay and bisexual men in non-English speaking countries, so we have made a special effort to try to recruit more participants from these communities,” explains Dr. philpot. “With the help of community associations, we targeted these people and managed to recruit some of them, but it took time and resources. This is a hard-to-reach demographic,” the researcher acknowledges.

Take back control

Why should you post your HIV status on social networks like Facebook or Instagram? One of the main reasons given by participants was regaining control over their history with HIV. For many people, discovering their HIV status is an ordeal, even a trauma. Once the discovery phase is over and the treatment has been placed, the announcement phase comes. Who should I tell? At what moment? For some, the public statement can dispel all rumours, or even a Excursion (that a third party discloses the seropositivity in place of the data subject without their consent).

Augus, 28, recalls the time a clinic secretary forced him to reveal his HIV status: “I checked on my Facebook post who I can talk to and when I wasn’t comfortable talking about it.” Flynn , 27, recounts what happened to one of his HIV-positive friends whose HIV status was made public in the media without his consent: “His life became absolute hell when he was exposed to rumors about his life and people’s comments of his story, “He told me his biggest regret was that he couldn’t control his own story.”

Social network parameters allow you to choose the audience you are targeting. On Facebook it is possible to select groups of people (families, colleagues, acquaintances, close friends, etc.). The same goes for Instagram with the “close friend” filter, or for Twitter with the option to have a private account. While three of the five participants chose to share their HIV status with all of their subscribers; two have decided to limit their audience. Despite this caution, participants admitted they couldn’t control how their posts were subsequently shared. It’s a golden rule on social media: what’s posted is no longer ours. Anyone can take a screenshot of the post and share it via private message, email, whatsapp, etc.

Participants had mostly positive feedback when they disclosed their HIV status via social media. However, fear of stigma, rumors or HIV-phobic comments created fear. “I stopped going out and really limited my social interactions (…). My biggest fear was people coming up to me,” says Flynn.

The participants agreed that this form of come out via social networks was not necessarily suitable for the closest people, such as family members or close friends. “I texted my mother that I was HIV positive and later she told me that she would have preferred to have had that type of discussion in person. I took his remark into account and made sure my family members heard about it over the phone instead of browsing Facebook. I think it’s more personal and respectful,” Angus admits.

(Re)come out of the closet

The analogy with the come out LGBT+ is often mentioned by people who disclose their HIV status, especially when they are people who have already done so, as is the case with the participants in this study. For Dexter, 50, coming out of HIV was liberating to get out of an ‘HIV closet’ of shame: ‘When I was told I was HIV positive I was advised to keep it to myself. But it didn’t suit me. So I started writing this blog and posted it on Facebook. I’m very open about being HIV positive.”

The public announcement of HIV positivity status is also an act of activist for the participants, aiming to change society’s HIV-phobic narratives and to give strength and hope to other HIV-positive people. Percy, 26: “One night I said to myself I really wanted to raise awareness and fight stigma. I came out with HIV with a Facebook status. I didn’t want it to remain a secret anymore. But more than a coming out, I wanted to send messages. HIV has changed. Create your own future. Don’t let HIV get in your way.”

For Jasper, announcing his HIV status on social media saved him from the “dramatic” side that sometimes happens in a situation like this when you’re dealing with someone who still thinks HIV is a death sentence: ” Personally, there is too much emphasis on the announcement with an often outdated view of HIV. It forces you to sit down and prepare yourself for a painful moment. By saying it on social networks I give more lightness to this announcement. It’s like saying, “It’s a part of my life now” instead of saying, “I have something terrible to tell you.”

In conclusion, the authors of the study state that disclosing their HIV status on social media had a doubly positive effect on the participants. On a personal level, it allowed them to “express and revise their identity” and shed the “weight of secrecy.” Collectively, this challenged the notion that HIV was inevitably associated with “uncomfortable, private, and difficult information.”

#Coming #Virtual #HIV #Problems

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