This post comes from Body & Soul’s Head of Social Work, Emile. For an explanation of many of the terms used in this blog, click through on the links or take a look at our HIV definition word cloud.
HIV-related stigma is usually regarded as operating in two major ways, as either ‘felt’ or ‘enacted’ stigma. However, last year when I began researching the psychological implications of living with HIV since the introduction of Highly Active Anti-Retroviral Therapy (HAART), I was introduced to an entirely new but equally harmful form of HIV-related stigma, ‘reverse’ stigma.
Generally speaking, ‘enacted’ stigma is defined by acts of discrimination, abuse, or ostracism whereas ‘felt’ stigma is defined as feeling stigmatised or experiencing the fear of being stigmatised (Jacoby, 1994; Block, 2009). These forms of stigma remain very real and unfortunately continue to envelop the lives of many people living with HIV with a daily sense of fear, anxiety and sadness.
Frequently one stigma feeds into the other. A person’s sense of ‘felt’ stigma may be fuelled by past acts of violent, malicious and heart-breaking ‘enacted’ stigma. Both forms of stigma are remarkably powerful and may prevent people living with HIV from accessing a wide range of support, commonly in fear that this would implicitly disclose their HIV status and provoke certain reactions or attacks.
The notion of ‘reverse’ stigma is very different and appears to have stemmed out of a series of misunderstandings around improvements in HIV medication. Put simply, ‘reverse’ stigma refers to the idea that those living with HIV should “get on” with their lives since HIV is “only a chronic illness” (Catalan et al., 2001). Challenging this does not imply an argument that all people living with HIV are “needy” or require high levels of care and attention. Indeed, anyone with a reasonable level of HIV knowledge knows that there are countless people living with HIV who are highly confident, successful and entirely independent.
‘Reverse’ stigma needs to be challenged, recognised and eradicated because it serves to fuel a sense of being misunderstood. Everybody has the right to be understood and treated with dignity and respect. Yet in an age where misconceptions about HIV prevail, it’s particularly important that a further set of incorrect and prejudicial assumptions about HIV are avoided at all costs.
The experience of being misunderstood can be catastrophic; it may lead to feelings of isolation, frustration and embarrassment. ‘Reverse’ stigma can be equally detrimental to a person’s sense of wellbeing as ‘felt’ and ‘enacted’ stigma.
Not only is HIV a condition in which a person’s health is likely to fluctuate, but increasingly advances and innovations in treatments have actually complicated the ways in which HIV is understood and lived. Living with HIV continues to cause a great deal of uncertainty and unpredictability in people’s lives despite these advances. The psychological challenge of dealing with this can be worsened by a modern trend in which health and wellbeing are often determined by results from monitoring technologies, rather than by the subjective experience of feeling well (Wong & Ussher, 2008: 125). For example, it’s perfectly possible to feel profoundly physically and emotionally unwell irrespective of a healthy CD4 count and viral load.
Acts of ‘reverse’ stigma are ignorant and emotionally and psychologically unintelligent. They deny the right of people living with HIV to have subjective experiences. For years, efforts have been made to tackle traditional forms of HIV-related stigma; to be confronted with a further obstacle is disappointing. Such challenges, however, remind us of how important it is to continue promoting respect, equality and a world free of all types of stigma.
- Jacoby, A. (1994) ‘Felt versus enacted stigma: A concept revisited: Evidence from a study of people with epilepsy in remission’, Social Science & Medicine, pp. 269-274
- Block, R. G. (2009) ‘Is It Just Me? Experiences of HIV-Related Stigma’, Journal of HIV/AIDS & Social Services, 8, pp. 1-19