Stigma and Supporting Disclosure

posted: 16/11/2009

How much do our friends and family influence our lives? Living with HIV, we rely on our social network for advice, emotional support, and information. But to get this HIV support, we have to disclose our HIV-positive status. Disclosing status almost always has some risk. We might be rejected, or experience their discomfort about HIV.
 

Practice makes telling easier
The advantages of telling others about being HIV positive status are well known, and one advantage is the "practice effect." The more we successfully tell others, the easier it becomes. Even if it didn’t go well, we still learn from the experience and will be more prepared next time. Positive experiences in telling others encourage us to do it again.
 

But negative experiences like rejection, and sometimes even physical abuse, may reinforce the social stigma we feel. What we feel and think about HIV stigma is based on what we know about the reality of HIV stigma and discrimination, the actual or potential social disenfranchisement, limitation of opportunity, and negative change in social identity.
 

Internalising stigma and the telling moment
Perceived stigma may lead to various outcomes, including negative changes in self-concept and emotional reactions toward those who may invoke the stigma. HIV-positive people tend to tell significant other people about HIV once they think the rewards of telling will outweigh the possible costs and risks.

Disclosing benefits
Telling others can lead to receiving more and better emotional, physical, and social support. The emotional benefits include

• social support,
• relief that comes from sharing a burdensome secret, and
• the reward of educating others about HIV.

Reasons for secrecy
Reasons for not telling people are

• fear of rejection,
• fear of stigma,
• privacy,
• self-blame, and
• risking the opportunity of sex.

We want to avoid serious negative consequences, so we avoid taking the risk of telling.

How do HIV stigma and social support influence telling partners?
This study gave people different situations and they were asked to say how willing they would be to tell the partner then about HIV. The study tried to discover what encourages HIV disclosure to sex partners, and what discourages disclosure, from the perspectives of HIV-positive gay men.

The study was of gay men using a Chicago, USA, HIV support organisation. The men were between the ages of 18 and 63, gay, 90% white, and 60% were diagnosed over 4 years. 80% of the men were on treatment.

"I've told all but family, who have issues."
The men had a wide range of views on stigma. Feeling socially supported didn’t seem to make this sample of men more ready to tell others. As earlier studies have shown, other things that predict telling sex partners include

• type of sexual relationship and
• adult romantic attachment style.

Social support might not have made the difference in telling for these men because it is possible the partners were part of the men’s existing HIV+ support networks. Many gay men with HIV have many positive men in their friendship networks.

The more socially supported and networked the men are, the less stigma hurts and harms them. Social support allows people to cope better with HIV stigma. Boosting social support therefore could be a way to improve how well people cope with HIV stigma.

This particular study of well-networked positive gay men did not find evidence that better social support encourages telling sex partners. Telling sex partners you have HIV is important because it alerts partners to the risks but telling partners does not automatically lead to changes in sexual risk taking. Some men confident about safer sex might ‘do’ the safer sex to avoid disclosure. Not telling, but using safer sex, seems to be doing enough morally.

Social support supports safer sex

The study did find social support helped men to have safer sex. Having safer sex and not telling suggests past experiences of sexual rejection after disclosure, and not being willing to risk such sexual rejection.

Social support from other HIV-positive gay men encourages men to initiate safer-sex, but didn’t, in this study, increase disclosing to sexual partners. The researcher speculates that most of the gay men probably knew each other already (including their shared HIV status) through using the same HIV support organisation for over four years. Probably for most of the positive gay men, there was simply nothing to say about both men having HIV.

Perhaps social support made no difference to telling sex partners partly because positive gay men often deliberately seek out other positive gay men as sex partners. Perhaps simply coming to a HIV+ social support group improves men’s communication skills and confidence about managing safer sex, with or without disclosure.

Feeling better after a good tell
Disclosing HIV may help improve psychological well-being if the response is good and positive. The value of a HIV support group comes from sharing information, and physical and emotional experiences and learning. For example, HIV-positive gay men can provide others with emotional support and reassurance that one is loved and valued despite HIV-positive status. HIV-positive gay friends can also provide empathy, familiarity and trust.

Telling other positive people does not, however, always help people tell people who, we assume, doesn’t have HIV.

Source

Help with telling people including a video from Terrence Higgins Trust

 

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