term stigma refers to any attribute that marks an individual as being
unacceptably different from other people. Stigmatising attitudes contrast those
who are ‘normal’ with those who are seen as ‘abnormal’ or ‘deviant’: they can
therefore be seen as part of a process of social control.1
HIV is not the only medical condition which has been stigmatised (others have
included tuberculosis, cancer, depression and other mental health issues).
black African communities, pejorative understandings of people with HIV are
often linked to perceptions of their sexual behaviour (promiscuity,
prostitution, homosexuality, etc.) as well as to fears that the infection is
readily transmissible. Moreover, HIV infection may be seen as a ‘death
sentence’, in the light of previous experiences in African countries when
treatments were not available.2,3
stigma results in HIV being perceived as an issue that affects ‘other people’
and makes informed discussion of the topic difficult. As such, it contributes
to the onward transmission of HIV and low rates of testing in black African
communities as well as affecting the life of people with diagnosed HIV.
are a number of different ways of describing and categorising stigma. One
- Enacted stigma: actual experience of discriminatory acts.
- Anticipated stigma: fear of such discrimination, which may lead to
- Internalised stigma (self-stigma): the person accepts the negative
social attitudes as valid.
series of qualitative research studies,3,5,6,7,8,9 black African people with HIV have reported instances of enacted stigma after
they have disclosed their HIV status or when others have realised they have
HIV. Individuals have been asked to leave shared accommodation by relatives or
by housemates. Others have found that due to irrational fears of contamination,
people avoided all physical contact with them, prevented children from playing
with them, were concerned about shared use of bathrooms, and kept items such as
cups and cutlery separate.
of a person’s HIV status can lead others to question the person’s sexual
morality, which threatens their role in the family and the wider community.
Individuals may be cut off from their partner and kept away from their
children. When the information has reached relatives ‘back home’ in Africa, these relationships have also been profoundly altered, sometimes affecting key sources of social support.
groups and leaders, usually a very important source of support, have on
occasion asked individuals with HIV to leave a congregation or expressed
hostility to antiretroviral treatments.5,8
much of the enacted stigma comes from within black African communities, it also
occurs from wider society. In employment, individuals may be discriminated
against because of their HIV status or experience breaches of confidentiality.
In antenatal and other healthcare settings, individuals have reported distressing
treatment and overwhelming ignorance regarding infection control procedures from
some staff. Moreover, press coverage which portrays black Africans in the UK as
bringing infection into the country and burdening the NHS is often experienced
as stigmatising. Similarly, press coverage of criminal prosecutions for HIV
transmission has been stigmatising.
noted above, stigma may also be ‘anticipated’: in other words, the person with
HIV is concerned about stigmatisation that may happen, or afraid of it. As a
result, they do not disclose their HIV status and avoid circumstances where
stigma may be encountered. These strategies greatly reduce the experience of
enacted stigma. Nonetheless, sometimes individuals may anticipate stigma to be
worse than it actually would be in reality.
study with black African women found that for many, controlling information
about their HIV status represented the single most important challenge in their
daily lives.5 The fear of negative reactions to disclosure
of this information and concerns about losing control over how far the news
would spread have been widely reported in a number of studies. Moreover, this
frequently leads to a weakening of key relationships, depletion of a person’s
social life, isolation, and prevents individuals from getting social support.
Black African people may already feel excluded from the majority population
because of their differing ethnic background, but HIV can also exclude them
from their own community.10,2,5,8,3
in terms of dealing with HIV, the danger of accidental disclosure can
discourage individuals from storing their medication in shared accommodation, taking
medication in front of others, taking medication generally, because it is
thought to lead to visible side-effects, or going to HIV treatment and support
of fear of violence, verbal abuse and abandonment, some women do not disclose
to their sexual partners.5
Similarly black African men who have sex with men are particularly reluctant to
disclose their status because they might be blamed for bringing their infection
upon themselves, because of their sexuality.11
may also avoid disclosing their HIV status at work, making it harder to manage
periods of ill-health or other issues. Linked to this, one study found that
people took jobs they were overqualified for.10
third form of stigma is internalised stigma (or ‘self-stigmatisation’). Here,
the person with HIV comes to share and accept the negative evaluation of him or
herself by others.
is commonly reported that the initial diagnosis of HIV is a great shock. However,
in the long term, some individuals are able to come to terms with being HIV
positive and live postively. For example, they may be proud of having been able
to face up to a challenging situation.
the other hand, others find it hard to move on from an overwhelmingly negative
view of the situation and of themselves. They may feel ashamed.
number of studies report on respondents seeing HIV diagnosis as a death
sentence; giving up all hope for the future; giving up on aspirations regarding
children, marriage, education, wealth or employment. Some individuals stop
caring about what will happen to them, withdraw socially and experience
depression. Moreover in one study, it was found that black African men with HIV
often used the metaphor of ‘weakness’ to describe their physical, psychological
and economic position. They found it hard to manage their identity as an
African man alongside their HIV status.5 8 2
experiences may be interpreted as being manifestations of internalised stigma.