Stigma and discrimination

The 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).

Within 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

HIV 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.

There are a number of different ways of describing and categorising stigma. One approach⁴ distinguishes:

• Enacted stigma: actual experience of discriminatory acts.
• Anticipated stigma: fear of such discrimination, which may lead to concealment.
• Internalised stigma (self-stigma): the person accepts the negative social attitudes as valid.

In a 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.

Awareness 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.

Faith 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

Although 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.

As 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.

A 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 

Specifically 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 services.

Because 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

People 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

The 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.

It 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.

On 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.

A 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

Such experiences may be interpreted as being manifestations of internalised stigma.