Gus Cairns investigates the negative beliefs people with HIV can have about themselves, and what to do about them.
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).
What is stigma? We’ve written about it before in HIV treatment update, for example in an article about the Stigma Index (www.stigmaindex.org) in issue 191.
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.
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 US 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 US,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 US – 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).
“Being gossiped about.” This is the fear most often cited by people with high levels of self-stigma. Not so much overt rejection, discrimination or even violence, but what’s said behind your back, the avoided glance, the assumed dislike.
“People with self-stigma pull away from you so they don’t get rejected: but they’re pulling away on the basis of what they think you think of them – even when it isn’t what you think.”
So says Nadine Ferris France, a researcher who has worked on violence against women for the World Health Organization, and was the Executive Director of Health Development Networks, a Thai/Irish collaboration for people affected by HIV and TB, including helping them self-advocate.
Now back in Ireland, she has set up a project to understand and delineate the core beliefs and characteristics of people attending the Open Heart House HIV Centre in Dublin.
The as-yet unpublished research is based on in-depth, searching interviews with 17 people with HIV chosen to be representative of affected communities. Its title – An unspoken world of unspoken things7 is based on a remark made by an interviewee about how self-stigma is all about absence: the disclosure not made, the friendship unattempted, the touch never reached for.
“Self-stigma reduces your expectations,” says France. “It makes you reduce your life to just living.”
France is specific about using the term self-stigma rather than internalised stigma. The latter assumes that stigma starts as a set of negative assumptions about HIV held by society, manifested in a set of discriminatory acts inflicted on the person with HIV – who then starts believing in some of the assumptions themselves, a sort of collaboration with one’s abusers.
“But the individual, as part of that society, already has strong beliefs and self-stigmatising views,” says France. If you fail to take the effects of self-stigma into account, you may over-estimate the hostility that people with HIV have to cope with.
She praises the Stigma Index project as an important piece of community-led social investigation, but urges caution in using participants’ accounts of being gossiped about as a measure of social stigma.
“We find, in fact,” she says, “that people self-stigmatise about two to three times as much as people actually stigmatise them.”
In the studies in Cape Town, for instance, while 10% of the general public thought that people living with HIV were ‘dirty’, 27% of people living with HIV felt dirty; whereas 38% of people living with HIV felt ashamed of their condition, only 16% of HIV-negative people thought they should be ashamed of it.8
Hence the core assumption in self-stigma that people are talking about you behind your back: faced with little direct evidence of hostility, the person’s own negative self-beliefs force them to conclude that people regard them with concealed hostility – when they probably don’t. “They think you are a migrant and sponging off resources, or a gay man who’s morally redundant anyway, or a drug addict...parasitic deviant individuals,” said one of France’s interviewees. But how does he know?
This perception of social ostracism has tragic consequences which emerge as separate but linked threads in France’s analysis: it leads to fear of disclosure, which leads to social isolation, a life of no sex or anonymous sex that avoids disclosure, negative body image, feelings of hopelessness and what France calls “restricted agency”: a feeling there is very little you can do to change your life. “I have to live with a secret that takes up a lot of energy, so I have less energy to focus on work, which means I won’t be as successful as I could be,” said one interviewee.
“One of the things that really jumped out,” says France, “is not so much that our interviewees were avoiding having sex – though some were – but that self-stigma and disclosure anxiety took all the pleasure out of sex.”
“My sex life...the intimacy, you know, is gone,” said one woman. “You know, the experiment, the stuff, all that’s gone, it’s just basic with the condom. I tried to say to him, you know I’m undetectable, this is what the doctors say, but then I feel guilty about saying that, because I’m thinking, sure he must be thinking ‘this one just wants to have sex without using a condom’.”
“The other thing that really surprised us,” says France, “is that unless you work on the core beliefs, self-stigma persists. Two of our interviewees were recently diagnosed, and one had been living with HIV for 27 years: yet there was no difference in their perceptions. You’d think self-stigma would ebb as time went on, but it’s impervious to new experience or knowledge if it’s something that’s founded in a pre-existing set of negative beliefs about yourself.”
Self-stigma can stick because it actually serves a protective function. The person’s low expectations of others’ expectations of them give them an excuse never actually to put those expectations to the test. “You can say to yourself, I’m not going to do that course or apply for that job, because I’m a bad person or because I’ll be stigmatised,” says France. “Losing the self-stigma may involve a lot of courage and a feeling that you are stripping off a protective cover.”
Given this, how can self-stigma be addressed?
One thing talked about at Open Heart House was the value of peer support. If they could steel themselves to meet other people with HIV, participants often discovered a wonderful sense of social solidarity and support, especially in helping others.
This has limitations, though. Seth Kalichman comments: “Going around speaking about HIV, wearing ‘HIV positive’ T-shirts: it makes sense that this would work, but not to the extent we’d hope, and there’s not much data that the effect lasts.” Activism does not always fix a person’s damaged sense of self. The recent death of prominent US AIDS activist Spencer Cox – a pioneering treatment activist in ACT UP, who spoke openly about depression, campaigned for better mental health for people with HIV, but in the end apparently gave up taking his HIV meds – bears witness to this.
So it’s ultimately about changing self-beliefs – which may involve having to change beliefs held well before one’s HIV diagnosis, such as feeling dirty about being gay, or grieving for the loss of family, friends and lovers, or being traumatised by abuse (child sexual abuse has a very strong association with subsequently becoming HIV positive).
Nadine Ferris France recommends a number of methods of strengthening ‘mindfulness’, the ability to question your own thoughts. Given not everyone can get in-depth counselling, she is an advocate of inquiry-based stress reduction, a slimmed-down version of cognitive behavioural therapy devised by US self-help guru Byron Katie.9
This invites people to question negative self-beliefs by asking of themselves whether those beliefs are true, how they know they are true, how they react when believing they are true, and who they would be if they didn’t believe they were true; finally, it gets them to explore the opposite belief.
This sort of affirmative work can do wonders, especially in people who’ve never experienced it before, though people with a deeper sense of doom and ‘wrongness’ may require more in-depth psychotherapy. But whatever method is used, demolishing self-stigma is about helping people get to the point when they can decline to be stigmatised – where, in France’s words, they can say: “If I don’t believe I’m a bad person, why would I believe you believe I’m a bad person?”
Every bully needs a victim. If one day the person simply stops thinking of themselves as a victim, whatever prejudice or discrimination is happening ceases to have its power to degrade and can be better fought. If you can achieve that freedom in your head, it’s catching.
France offers an example: “Jo Manchester was one of the founders of ICW, the International Community of Women Living with HIV and AIDS. When she was diagnosed, terrible things happened including her losing her job. I remember her saying to me: ‘One day, I just thought “Right, go on, stigmatise me then. I don’t care.”’ From then on, I remember her saying, she never experienced stigma directed against her again.” And she’s become an example for other women with HIV.
Gandhi is supposed to have said “Be the change you want to see in the world”. But actually he didn’t. He said something better, more precise and less prescriptive. “As a man changes his own nature...so does the attitude of the world change towards him.”
