The Diminished Self -- HIV and Self-Stigma
June 25, 2013
Let's suppose you're part of a community where HIV is common, but you hold negative views about people who have the virus: because of fear, or ignorance or a generally conservative viewpoint.
You might say things like "Most people with HIV get it from being weak and foolish" (22%); "You can't trust people like that" (24%); "They should feel guilty for what they've done, really" (36%).
Secretly, you fear HIV and are too scared to be tested. You know it's common in your community but you'd rather not know your status (48%), mainly because you know people would leave you if you had HIV (41%).
As the percentages indicate, this is based on a real survey, in this case of 500 black South Africans living in a township.1
The stigma people with HIV encounter from other people is obviously problematic. But this article is about what happens to someone with such opinions if they are diagnosed with HIV themselves. In some cases, people may realise that much of what they thought was wrong. But in other cases, they may hold on to the disapproval, turning the stigma in on themselves, into guilt, shame and silence.
This is internalised stigma, or self-stigma (we'll look later at the difference between those two).
Stigma and Shared Stigma
The sociologist Erving Goffman described stigma in this way:
"While a stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others ... and of a less desirable kind -- in the extreme, a person who is quite thoroughly bad, or dangerous, or weak. He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attribute is a stigma, especially when its discrediting effect is very extensive."
He also added that, to understand stigma, "a language of relations, not attributes, is really needed."2 What's uniquely painful about stigma is that it's transactional: something stigmatiser and stigmatised do together.
In the article about the Stigma Index, Yusef Azad, director of policy and communications at the National AIDS Trust, put it this way:
"In stigma, a belief system is actually shared by the stigmatiser and the stigmatised. The stigmatiser fears becoming the type of person they hate, and the stigmatised person feels [that] shame. ... It's dependent on the stigmatised person actually giving a damn. Stigma has a grip on people: that's what's so toxic and unfair about it."
So, you can be prejudiced against people and think them inferior, but they might not give a damn; you can discriminate against them, but discrimination is something that can be shown to be visibly unfair and can often be redressed. But stigma alters the way the stigmatised person thinks of themselves, and only really has one answer: the person (perhaps with support and positive role models) must decline to be stigmatised.
The Damage of Stigma
Communities that are themselves stigmatised can be especially hard on one of their own who is seen to be deviant or bad. HTU 187 looked at HIV-related stigma within gay and African communities in Stigma begins at home.
The theme is underlined by the U.S. behavioural researcher Seth Kalichman. He has investigated the powerful difference stigma can make to the lives and health of people with HIV or at risk of it. He found that those with stigmatising attitudes were three times less likely to get tested for HIV.
People who hadn't tested were also far less likely to have ever used a condom, and far more likely to have been diagnosed with another sexually transmitted infection. They were also 40% more likely to be male and 50% more likely to have dangerous beliefs about HIV (for instance, that you could get rid of AIDS by having sex with a virgin). In some other cases, they shared these attitudes with the surprisingly high proportion of people -- 18% -- who had tested for HIV but said they did not know their status.
Stigma research is complex in part because it is usually impossible to untangle causation in the research findings: "Better self-image leads to positive health behaviours, and positive health behaviours lead to better self-image," comments Kalichman. "These things happen in clusters."
So, stopping stigma, giving people correct information about HIV, and encouraging testing are more likely to change people's HIV risk for the better if addressed together, rather than singly.
In another paper from South Africa,3 Kalichman and colleagues investigated traditional beliefs about HIV, such as AIDS being caused by spirits and supernatural forces. They found that the people who held these beliefs were overwhelmingly more likely to believe that people with HIV have the virus through being weak and foolish, should be isolated (both nine times more likely), and had done something wrong and deserved to be punished (six times more likely).
Even when the figures were adjusted for people having correct knowledge about HIV transmission, people with strong traditional beliefs were still three times more likely to believe that people with HIV should be punished and seven times more likely to describe them as weak and foolish, though this knowledge largely stopped them thinking that they should be isolated.
Stigma is resistant to information: it is an overall mindset that may only change slowly -- even in response to the shock of finding yourself one of the people you'd previously stigmatised.
Kalichman and colleagues have turned a questionnaire that reliably correlated stigmatising attitudes with risk-taking and avoidant behaviour around HIV into a seven-item instrument that measures how people feel about themselves.4
Even the questionnaire is an uncomfortable read. It combines two questions that rate people's ease with disclosure ("It is difficult to tell people about my HIV infection" and "I hide my status from others"), with one about blame ("It is my own fault I am HIV positive") and four on whether people have the following negative feelings about themselves: dirty, guilty, ashamed, worthless. The degree to which people concur with these finely differing feelings can provide quite an accurate measure of self-stigmatisation.
In a recent study in the U.S.,5 Kalichman and colleagues paired up HIV status disclosure -- an important factor not only in helping prevent the spread of HIV, but in helping people combat social isolation -- with internalised stigma, as well as with depression score, age, education and income. They found that depression, age, education and income had no influence on whether someone was "out" as HIV positive; indeed, when they looked at whether people had disclosed to a primary sexual partner, they found that depression was associated with a small but statistically significant increase in the likelihood of disclosure.
When they added in internalised stigma, though, the difference was stark: people with internalised stigma were half as likely to disclose their HIV status to their partner and less than half as likely to disclose it to their family.
Contrary to what one might expect, depression and internalised stigma were not strongly associated.
The Centre for Epidemiological Studies Depression Scale (CES-D) is one of the standard measuring instruments for depression. It asks about the degree to which people have experienced specific depressed emotions at times during the past week ("I have felt I could not shake off the blues even with help from family and friends" and "I have thought my life has been a failure" are two examples).
The self-stigma index, in contrast, asks about whether people generally feel bad about themselves in particular ways. Because it's less tied to moments of intensity, it may be capturing something colder and less changeable: their considered verdict on themselves as human being. Self-stigma may be experienced as a grim acceptance that things are the way they are.
"In some places," Kalichman says, "People may have good reason to hold some of these beliefs. Disclosure is a problem: people may react badly. But when you yourself hold the beliefs you think those you disclose to will hold, it makes disclosure impossible."
This is anticipated stigma: the expectation that people will hold the same poor opinion of you as you do yourself. It can make it difficult to disentangle cause and effect: are people reluctant to disclose to others because they have experienced discrimination in the past, or because they anticipate it?
People in one South African survey6 who had sex without disclosing were twice as likely to say they had lost a job or housing because of their status, and 50% more likely to have experienced discrimination in general. "But," as Seth Kalichman says, "people with high levels of internalised stigma may blame everything on their status. They may attribute being fired or evicted to their HIV because they feel it's the worst thing about them."
Equally, though, high rates of self-stigma and high rates of external stigma are linked. "We found higher levels of both discrimination, including violence, and stigma in South Africa than in the U.S. -- and as a result more attempt to hide who you are. In Atlanta, in the clinic I worked in, we found a few people would take their antiretroviral pills out of their bottles and put them in another container to conceal being HIV positive. In South Africa, the clinic parking lot was full of discarded drug bottles: everyone would put them in a bag or in their pocket."
With, no doubt, knock-on effects on adherence -- and on the viability of pre-exposure prophylaxis (PrEP).
This article was provided by aidsmap.com. It is a part of the publication HIV Treatment Update.
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