Awkward interactions: disclosing HIV online

HIV Australia | Vol. 12 No. 1 | March 2014

By Abigail Groves

ABIGAIL GROVES investigates gay men’s online relationships, and finds that HIV-stigma is alive and well.

When I was studying internet use ten years ago, one question that exercised HIV researchers was whether the emergence of the internet would increase HIV infections.

This was at a time when HIV diagnoses among gay men were beginning to increase again, after declining consistently for a decade. HIV researchers focused on the association between internet use and risky sexual behaviours.

As Grov et al. note, gay men who use the internet to find sexual partners tend to have sex more often and with more people, though the precise nature of this ‘association’ was often a bit unclear.¹

One of the things that I found frustrating was a tendency among researchers to conflate the internet with the people who used it, as if logging onto the net would somehow, in itself, give you a sexually transmissible infection (STI).

This tendency was not confined to HIV. At that time, writing about the internet was full of such scare-mongering.

Historian Robert Reynolds has characterised such thinking as different versions of ‘the web made me do it’.²

Ten years later, internet use has become so widespread and normalised that questions like these seem irrelevant.

What is true is that the internet has made it easier for many of us to find someone to have sex with. Earlier media technologies such as telephones and newspapers did this too, but the internet has made it a lot easier. This is, I suggest, particularly true for gay men.

In 2008, Reynolds described a visit to Gaydar, then ‘the most popular gay Internet site’, and trawling through hundreds of profiles.

He likened it to a new kind of sexual consumerism, ‘shopping for cock’.³

The internet has, as Reynolds acknowledged, provided an explosion of sexual possibilities for gay men.

Good sex, bad sex, casual sex, kinky sex, group sex, safe sex, hot sex – all kinds of sex.

But where is HIV in this sexual market place?

Where five years ago Gaydar was the most popular gay site, it is now one among many. One man that I spoke to for this article called it ‘a legacy site – mostly for old school gay men’.

The internet has moved at breakneck speed. Smart phones and mobile apps now provide mobile access to the internet, and the popularity of apps like Grindr and Scruff testifies to the usefulness of these technologies.

Along with the proliferation of opportunities for sex, the internet has produced a proliferation of opportunities to negotiate sex. HIV and STIs are in these negotiations.

‘The street finds its own uses for things,’ wrote science fiction author William Gibson.

Now every tick box, every word on a profile, every message answered – or not answered – is part of that negotiation. Each is full of possibility – and risk – in almost equal measure.

‘Most negative men don’t disclose a status online,’ says James, an HIV-negative man that I talked to for this article.

‘Some will have a standard thing like “DDF” (drug and disease free) on their profile. Sometimes they say, “DDF since a particular date,’’ to say they have tested recently’.

James believes that most HIV-positive men do not disclose their status online.

‘My experience is that most positive guys will avoid disclosing wherever they can.’ James pointed to the subtleties of disclosure online.

‘There are some guys who will say they are positive on their profile but don’t include a picture of their face. If someone contacts them, they can choose when or whether to out themselves.’

‘There are positive guys who write in their profile that they are positive. They make a big deal of it so that people notice it and include a face pic as well, so they are effectively outing themselves to everyone.’

James surmised that these were mostly older gay men who have been positive for a long time, who disclose in order to forestall rejection by others.

This fear is well-founded: the HIV-negative men in one study (Grov et al., 2013) stated that although they routinely used condoms, they would avoid having sex with men they knew to be positive.⁴

Studies of positive men have found that most have experienced such rejection at some time.⁵

Fear of sexual rejection is usually cited as the prime reason for avoiding disclosure, but the stigma surrounding HIV has many other effects, well beyond sex.

Indeed, one of the opportunities that the internet has provided is the ability to rapidly disseminate information – even when that information is private or inaccurate and its dissemination may be deeply damaging.

‘I have seen some appalling behaviour online,’ says James.

‘Guys being outed all over the place. Trash talk directed at poz guys. It happens quite a bit. Most guys won’t disclose until they’re confident they are talking to someone who is sane and sensible.’

This does not sound like a very safe or supportive environment for men with HIV. ‘Instead of trying to negotiate disclosure on those mainstream sites, they just left. They have gone to other sites like BBRT [BareBack Real Time].’

The proliferation of different sites and apps in the last five years means that different sites cater to different sub-groups, as users vote with their clicks. This was confirmed by positive men that I spoke to.

‘I would avoid Gaydar or Gay.com,’ says Sam.

‘They are twinky. There’s a lot of really young guys and newbies. All talk, no action.’

Instead he says, ‘I use Scruff. If I am looking for sex, I want someone who’s up for it. I don’t want to pussyfoot around.’

Even on Scruff, Sam says he prefers the discretion of being able to choose how and when he discloses.

‘My profile says, “Ask me” about my HIV status,’ he explains, ‘And when they ask, I tell them I’m positive. My experience is that people whose profiles say ‘ask me’ or ‘safe sex’ usually turn out to be positive.’

Sam emphasised that the responsibility for initiating that conversation should not just fall on him as a person with HIV.

‘I say I’m looking for raw sex, so negative guys need to take some responsibility and ask me,’ he said.

‘The last thing I want is a conversation about HIV status after I’ve just had sex. I have been in that situation … some guy knew I was looking for bareback sex and he was too.

‘He didn’t say anything and he was so into it that I just assumed that he must be positive too. It turned out he wasn’t and he got all worried. I packed him off to get [post-exposure prophylaxis (PEP)] and it was fine, but I could have done without it.’

Another positive man, Ben, says he does disclose his HIV status on his profile.

‘I am positive and I don’t like condoms,’ says Ben.

‘I’m looking for other positive guys. I don’t want so I’m very up front. My HIV status is on my profile – that filters out most negative guys. I don’t worry about people knowing my status. Anyone who googles me can see my HIV status – it’s no secret.’

The advantage of this online ‘weeding out’ – for everyone – is that it’s done at a distance, rather than in an awkward, face-to-face conversation.

What’s the point of knowing all this? The standard refrain in internet research is that studying online culture is important in order to develop effective prevention and education materials for the internet.

The idea is that HIV prevention and education can somehow insert itself into these conversations.

One study of online sexual health promotion found 178 online interventions of different kinds, though many of these were limited to establishing an online ‘presence’ for the organisation, such as a website or Facebook page.⁶

Australian HIV researchers and educators are increasingly focusing on HIV prevention in online spaces, through websites such as www.gettested.com.au or VAC/GMHC’s www.top2bottom.org.

ACON, for example, was also involved in the production of the ‘Horizon’ web series, which featured safe sex themes and was a surprise hit.

However, the few guys I spoke to were oblivious to HIV prevention online, ‘I have never noticed anything,’ said Sam.

‘On the other hand, maybe I screen it out because I’m positive and I think, “Oh, I already know that stuff.”’

The problem with health promotion campaigns online – as indeed with all health promotion campaigns – is that it is very hard to measure how well they work.

Some studies have found online campaigns to be just as effective as campaigns that use more traditional media, but there is mixed evidence on this.⁷

For example, the Burnet Institute conducted a research project using emails and text messages to promote sexual health. It was effective in increasing awareness of STIs, but had no impact on condom use.⁸

Clearly, HIV education campaigns online need to be carefully designed and targeted.

Stigma directed toward people living with HIV is one target for HIV education efforts.

James suggested focusing on site owners, to encourage them to clamp down on bad behaviour online.

‘Spewing someone’s HIV status all over the place is not OK. Gay sites need to get serious about responding to that kind of thing,’ he says.

One study by the US Stopaids group found gay website owners strongly support health promotion efforts, but the report did not address HIV-related stigma at all.⁹

Efforts to address stigma have to date been disappointing, though the Fear Less, Live More campaign by AFAO and NAPWHA and the ENUF campaign by Living Positive Victoria are two honourable exceptions.

Reducing the stigma attached to HIV should make some of these awkward interactions – whether they are online or anywhere else – a bit easier, but that is no small task.

Some of the names used in this article have been changed to protect the privacy of individuals.

References

1 Grov, C., Agyemang, L., Ventuneac, A., Breslow, A. (2013). Navigating condom use and HIV status disclosure with partners met online: a qualitative pilot study with gay and bisexual men from craigslist.org AIDS Education and Prevention, 25(1), 72–85.

2 Reynolds, R. (2008). Imagining gay life in the internet age or why I don’t internet date. International Journal of Emerging Technologies and Society, 6(1), 2–13.

3 ibid.

4 Grov, C., et al., (2013), op. cit.

5 Smit, P., Brady, M., Carter, M., Fernandes, R., Lamore, L. , Meulbroek, M., et al. (2012). HIV-related stigma within communities of gay men: A literature review. AIDS Care, 24(3-4), 405–412.

6 Gold, J. (2011). A systematic examination of the use of online social networking sites for sexual health promotion. BMC Public Health, 11, 583–89.

7 Noar, S., Black, H., Pierce, L. (2009). Efficacy of computer technology-based HIV prevention interventions: a meta-analysis. AIDS, 23(1), 107–115.

8 Lim, M., Hocking, J., Aitken, C., Fairley, C., Jordan, L., Lewis, J., et al. (2012). Impact of text and email messaging on the sexual health of young people: a randomised controlled trial. Journal of Epidemiology and Community Health, 66, 69–74.

9 Wohlfeiler, D., Hecht,J., Raymond, H., Kenneday, T., McFarland, W. How can public health, website owners and website users come together to solve one of the biggest challenges in gay, bi and trans men’s health? Retrieved from: http://stopaids.org

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Dr Abigail Groves is a freelance writer and a former Policy Analyst at AFAO.