A qualitative study
This study was conducted by Dr. Steven Philpot and his team at Kirby Institute University in Sydney (Australia) and published in the health journal Sociology of Health and Illness before being taken over by aidsmap. This is a qualitative study with interviews conducted with five Australian men who are HIV-positive, gay or bisexual. The participants were all white. The average age was 33 years (26 to 50 years). English was their first language and they all had a university level education and had no difficulty in accessing care and treatment. Furthermore, all of the participants had an undetectable viral load and the assurance that publicly announcing their HIV status would not have a significant impact on their daily lives.
Questioned by Seronet, Dr. Steven Philpot specifies that the lack of diversity in the profiles retained constitutes one of the limits of the study: “The participants who are 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 involved in political activism and HIV associations”. The researcher explains that it was more difficult to reach people further away from care and associations: “Many people are not as comfortable with their HIV status as our participants and they are less likely to use social media to advertise their HIV status. What regarding 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 we managed to recruit some of them, but it took time and resources. This is a hard-to-reach population,” acknowledges the researcher.
Take back control
Why announce your HIV status on social networks like Facebook or Instagram? One of the main reasons mentioned by the participants was to regain control over their history with HIV. For many people, the discovery of HIV status is an ordeal, even a trauma. Once the discovery stage has passed and treatment has been placed, comes the announcement stage. Who to tell? At what moment ? For some, saying it publicly can cut short any rumours, or even a outing (the fact that a third person discloses the seropositivity in place of the person concerned without his consent).
Augus, 28, recalls the time a clinic secretary forced him to reveal his HIV status: “On my Facebook post, I controlled who I might talk to when of this call to the secretariat, I was forced to say so at a time when I was not comfortable talking regarding it”. Flynn, 27, recounts what happened to one of his HIV-positive friends whose HIV status was publicly revealed in the media without his consent: “His life became absolute hell, seeing rumors regarding his life and people’s comments regarding his story. “He told me his biggest regret was not being able to control his own story.”
The parameters of social networks allow you to choose the audience you are addressing. On Facebook, it is possible to select groups of people (families, colleagues, acquaintances, close friends, etc.). Same thing on Instagram with the “close friend” filter or on Twitter with the possibility of having a private account. While three of the five participants chose to announce their HIV status to all their subscribers; two have decided to restrict their audience. Despite this caution, participants admitted that they might not control how their posts were subsequently shared. It’s a golden rule on social networks: what is posted does not belong to us anymore. Anyone can take a screenshot of the post and share it via private message, email, Whatsapp, etc.
The participants mainly had positive feedback when they announced their HIV status via social networks. However, fear of stigma, rumors or HIV-phobic comments generated anxiety. “I stopped going out and really limited my social interactions (…). My biggest fear was people coming up to me,” Flynn says.
Participants agreed that this form of coming out via social networks was not necessarily suitable for the closest people such as family members or close friends. “I came out HIV positive to my mother by text and later she told me that she would have preferred to have this kind of discussion in person. I took his remark into consideration and made sure my family members heard regarding it over the phone rather than browsing Facebook. I think it’s more personal and more respectful,” admits Angus.
(Re)coming out of the closet
The analogy with the coming out LGBT+ is often mentioned by people who announce their HIV status, especially when they are people who have already done so, which is the case of the participants in this study. For 50-year-old Dexter, coming out HIV was liberating to come out of an “HIV closet” of shame: “When I was told I was HIV-positive, I was advised to keep it for me. But, it didn’t suit me. So I started writing this blog and posted it on Facebook. I am very open regarding being HIV positive”.
For the participants, the fact of announcing one’s HIV-positive status publicly is also an act of activism which aims to modify the HIV-phobic representations of society and to give strength and hope to other HIV-positive people. Percy, 26: “One evening, I said to myself that I really wanted to raise awareness and fight once morest stigma. I came out with HIV with a Facebook status. I didn’t want it to be 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 the way of you.”
For Jasper, announcing his HIV status on social media saved him from the “dramatic” side that sometimes happens in this kind of situation when dealing with someone who still thinks that HIV is tantamount to a death sentence: “ In person, it gives too much weight to the announcement with often an outdated view of HIV. It forces you to sit down and prepare for a painful moment. By saying it on social networks, I give more lightness to this announcement. It’s like saying, “It’s part of my life now,” rather than, “I have something terrible to tell you.”
In conclusion, the authors of the study explain that announcing their HIV status on social networks had a double positive effect on the participants. On a personal level, it allowed them to “express and rework their identities” and to shed the “weight of secrecy”. On a collective level, this has made it possible to fight once morest the representation that HIV is necessarily associated with “unpleasant, private and difficult information”.
