“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unpublished research is based on in-depth, searching interviews with 17 people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.”