The enduring power of stigma – understanding why HIV-positive gay men don’t disclose their status

Study highlights stigma within gay communities, and amongst HIV-positive men

The accounts of a group of gay men living with HIV in Dublin, most of whom rarely, if ever, disclose their HIV status to casual sexual partners, starkly reveal the extent of HIV stigma within the gay community, according to a qualitative study published online ahead of print in Qualitative Health Research. While interviewees feared being sexually and socially excluded on account of their HIV status, they also stigmatised others living with HIV and rejected a shared identity.

For this in-depth, small-scale study, Patrick Murphy of the National University of Ireland Galway interviewed 15 gay men living with HIV in Dublin, all of whom were taking HIV treatment and had casual sexual partners. Participants were aged between 21 and 48 years and had been diagnosed with HIV for between six months and 20 years. Half were born in other European countries or in the Americas. Interviews were conducted in 2013.

Among these individuals, not disclosing HIV status to casual partners was common. In addition more than half had never disclosed their status to a gay friend. Murphy identified three ways in which the interviewees constructed the experience of not disclosing their status, each inextricably linked with stigmatising discourses surrounding HIV.

Self-protection

Most interviewees expected that disclosure would result in sexual rejection, as this man explained:

Glossary

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

qualitative

Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

serostatus

The presence or absence of detectable antibodies against an infectious agent, such as HIV, in the blood. Often used as a synonym for HIV status: seronegative or seropositive.

serosorting

Choosing sexual partners of the same HIV status, or restricting condomless sex to partners of the same HIV status. As a risk reduction strategy, the drawback for HIV-negative people is that they can only be certain of their HIV status when they last took a test, whereas HIV-positive people can be confident they know their status

“If you told everybody you met immediately before you went on a date… that you were HIV-positive, the chances are that you’d never have a date, and you’d never have sex, and obviously that’s completely unrealistic.”

Casual partners, boyfriends and friends could not be trusted to keep a secret:

“The gay community in Dublin is very close knit and very small. Word like this travels. As it has travelled, like wildfire…”

The consequences of disclosure went beyond a loss of sexual opportunity, and extended to social exclusion. The two interviewees whose HIV status was widely known within the gay community described verbal abuse, gossip and sexual exclusion. The gay community was not perceived to accept and support those living with HIV.

Some interviewees noted that other gay men were troubled by the perception that HIV was prevalent in the gay community. Rather than allowing HIV to be associated with homosexual sex, they attributed it to promiscuity or sexual deviancy. Those who remain uninfected wished to distance and differentiate themselves from those who have HIV:

“There’s an awful lot of slut shaming then around people who are HIV-positive… You don’t have to look very far on the internet to see gay people saying horrible things about other gay people with HIV… I’ve noticed that people tend to associate it with kind of those party boy drug fucks, you know those circuit party muscle boy types.”

Murphy notes the language used by his interviewees – ‘slut’, ‘leper’, ‘criminal’ and ‘AIDS-riddled whore’. In this context, not disclosing HIV status was a form of self-protection. The benefits of disclosure were uncertain while its negative consequences were all too frightening. 

Morally justified

A second theme in the interviews was that interviewees understood themselves to present little or no risk of HIV transmission to their sexual partners. All were taking HIV treatment and most had an undetectable viral load. Many used condoms and many men preferred to be the receptive partner so as to lower any risk of HIV transmission.

“As time went on I became more relaxed in my thinking about telling somebody… I guess I knew I was less of a risk to someone else... My viral load, and just knowing I wasn’t as much of a risk as somebody who wasn’t being treated, I suppose.”

Moreover they presented themselves as morally irreproachable. For example, although the researcher did not ask about the circumstances that led to them acquiring HIV, many wanted to discuss it. In doing so, they were at pains to distinguish themselves from other, less responsible HIV-positive men. Three were adamant that they had never had unprotected anal sex; four said that they could trace their infection to a one-off incident or a specific partner; others presented themselves as unlucky:

[My friends’ reaction to my diagnosis] “was actually shock… it was like ‘oh, right, you know, you are probably the one who does the least carry on, and you’re the one who got it, where we [had a] much broader range of partners, and we didn’t get anything’.”

Whatever the circumstances that led to infection, this ‘rhetoric of the moral self’ serves a social purpose. The men did not want to be seen as irresponsible, promiscuous or blame-worthy.

This is important, Murphy argues, as it allows the men to find the act of non-disclosure morally permissible. Their moral character meant that they could be trusted to correctly judge what was necessary to protect their partners.

“Interviewees had to resist discourses of infectiousness and discourses of sexual and social deviancy,” the researcher writes. “Those who successfully resisted both could justify non-disclosure as morally permissible: if no transmission risk existed, and the interviewee’s assessment of that risk could be trusted, there was no moral imperative to disclose.”

A rejection

The interviewees had notably little contact with other people living with HIV (ten of the 15 had no contact at all, as far as they knew). Further, some interviewees applied the same kind of stigmatising discourses of sexual risk and social deviancy to other HIV-positive men as did the wider gay community.

“I heard somebody was HIV, last year . . . a friend of a friend and eh I just [thought] ‘stupid, you’re forty years old’… and I said to myself ‘come on like’.”

“Everybody now is having sex and there’s just like no condoms because you can’t get HIV anymore or AIDS because it’s so easily fixable, you know so now they’re actually going back to the 1970s where it actually is all barebacking.”

Several respondents expressed discomfort with the idea of serosorting (preferring other HIV-positive men as partners and usually having condomless sex with them). This was usually justified by concerns about sexually transmitted infections and super-infection with different strains of HIV, but appeared to reflect something deeper in some cases. This man was asked how he would feel about having sex with an HIV-positive man:

“Very afraid, because I have afraid he give me a new virus. I am afraid, I don’t know why. Now you understand I am afraid of what I have.”

In their distancing of themselves from other HIV-positive men, several respondents avoided those who visibly and vocally embraced their identity as HIV-positive people or linked themselves with HIV-positive support networks.

“I promised myself [HIV] won’t define me, and it won’t.”

[If somebody disclosed their serostatus on a dating profile] “I would find it slightly off-putting, not because they’re HIV positive, but because they’ve chosen to put [on their profile] they’ve HIV... I just wonder [at] the thought processes… to decide that you’ve got whatever 10 words to say something about yourself, and the first thing you want to put down is you’re HIV positive... “

Research on stigma in other contexts has noted the tendency of some stigmatised individuals, particularly those who come close to passing as ‘normal’, to perceive a hierarchy within the stigmatised group. Specifically, they look down on people whose difference is more visible or obvious.

In the same way, some gay men living with HIV reject those who make their HIV status apparent by being open about their HIV status. They reject the possibility that HIV could come to define them and their lives.

Conclusion

Patrick Murphy noted that whereas frank discussion of HIV status with sexual partners is often promoted for HIV prevention, this was not the frame within which interviewees saw it. He says: “Disclosure was rather about the revelation (or concealment) of a stigmatised identity, and was therefore a means of both self-protection and identity rejection.”

He notes that HIV has been seen as a disease of the ‘other’ since the beginning of the epidemic. HIV can both signify a violation of conservative social values and a punishment for that violation. These processes can operate both in the wider society (HIV being seen as a disease of gay men) and within gay communities (HIV being seen as a disease of the sexually irresponsible).

In contrast to some other recent reports, in which effective HIV treatment is described as helping to normalise the experience of living with HIV, this account highlights the severe social consequences of an HIV diagnosis for many. Its findings on self-stigma echo another Irish study reviewed in HIV Treatment Update in 2013 and recently published in the Swiss Medical Weekly (France et al).

Patrick Murphy comments: “The apparent dearth of supportive networks of any type for HIV-positive men in Dublin’s gay community, combined with the apparent prevalence of stigmatising discourses being deployed by both the uninfected and the infected, gives some indication of the social distress associated with living with HIV in Dublin’s gay community at the time that these interviews were conducted.”

References

Murphy PJ et al. Serostatus Disclosure, Stigma Resistance, and Identity Management Among HIV-Positive Gay Men in Ireland. Qualitative Health Research online ahead of print, 2015. (Abstract).

France NF et al. "An unspoken world of unspoken things": a study identifying and exploring core beliefs underlying self-stigma among people living with HIV and AIDS in Ireland. Swiss Medical Weekly 145. 2015. (Abstract) (Slide presentation).