Jump to

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

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.

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. HTU187 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.

Measuring self-stigma

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).

The assumption of rejection

“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.

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.”

Addressing self-stigma

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.”

In Kalichman SC
and Earnshaw VA Stigma
experienced by people living with HIV/AIDS.Chapter 2 of Stigma,
Discrimination and Living with HIV/AIDS: a Cross Cultural Perspective. Springer
Science and Business Media, 2013. Pre-publication proof.

Kalichman SC and Simbayi L Traditional beliefs about the cause of AIDS
and AIDS-related stigma in South
Africa. AIDS Care 16(5):572-580, 2004.

Issue 215: Spring 2013

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

close

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends
checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member
of your healthcare team for advice tailored to your situation.