The general definition of stigma identifies it as a manifestation of disgrace usually accompanying a specific circumstance viewed as shameful within society. Erving Goffman (1963) builds upon this idea by adding criteria such as “abominations of the body” or “blemishes of individual character” which ultimately lead to a “spoiled identity”. By receiving this identity, one is subject to unfair discrimination and subsequently exclusion – one is denied acceptance in society. In cases of HIV/AIDS stigma plays a vital role in hindering those affected from disclosing their status. Women may be seen as no longer conforming to society’s idealized roles of “mother”, “daughter”, “wife” et cetera, additionally being perceived as promiscuous and having brought the disease upon themselves. These consequences of stigma ultimately decrease the patient’s overall well-being and influence other factors such as health seeking behavior and treatment adherence. Therefore, it is vital that health professionals work toward minimizing the stigma attached to HIV.
The above photo shows a young woman with various words written all over her body. Some are scratched out and others are emboldened. The image has various slurs such as “whore”, “slut” “tainted” with other words such as “daughter”, “mother”, “sister” interspersed. The scratching out of the latter group of words highlights the disruption to women’s identity that occurs upon acquiring HIV, while the emboldening of slurs and insults emphasizes the stigma faced by those women. This combination shows the contribution of both one’s perceived identity – by oneself and by the community – and stigmatization to disclosure. Her hand covers her mouth as these factors make revealing her status daunting, and she fears what will happen to her. This is a common feeling among women living with HIV and will be thoroughly discussed within this essay.)According to a 5-year long peer-reviewed study regarding disclosure among women living with HIV in South Africa, a seropositive status disrupted women’s lives in two significant ways: it disturbs one’s constructed identity and alters women’s relationships with family, friends and possibly their community.
The disturbance of women’s self-perceived identity caused by having HIV affected women in a wide variety of ways, ranging from disrupting their sense of self to altering their career or even family plans (in rare cases). One woman in the study also described HIV as a “children’s thing” insinuating that it is a young person’s disease (one that is not or should not be contracted by “older people”). From this one can draw the conclusion that should ‘older’ people – women specifically in this case – contract HIV, they will experience stigma following the shattering of the community’s perception of what a mother, “older woman” or “good wife” entails. Additionally, a positive HIV status also puts a strain on one’s relationships and disclosing one’s status tests the strength of relationships built around certain identities, for example: as being daughters, mothers, friends et cetera. It is quite probable that disclosing one’s positive status could then affect one’s sense of belonging within the community and would therefore be a crucial factor in the decision to disclose as it opens one up to experiencing stigma upon disclosure.
Northumbria University conducted a systematic search using multiple online databases through their library search engine to compile a review of the perceptions and experiences of women living with HIV/AIDS as well as the challenges they faced and any support they had. Results showed that the combination of internal and external stigma faced by women living with HIV/AIDS makes disclosure a very difficult act. It was found that women experience high levels of fear of being outcasted and ostracized from the community or their families. This fear of losing a sense of belonging has already been addressed within this essay, however the focus of this study that will be applied here is the stigma experienced by women living with HIV rather than its effects. The studies show that these women may face not only social discrimination in the form of exclusion from the community but may also experience violence and even loss of employment leading to financial issues. Another finding was ‘internalized stigma’ among many women. This elicited a feeling of self-blame which lead to self-isolation and hesitance in revealing their status but also in seeking health care, resulting in both their psychological and physical health deteriorating. Essentially, HIV infection resulted in social, psychological, and economic downfall among women meaning that it is often easier to withhold one’s status out of fear of the repercussions associated with having HIV and it is the responsibility of health care workers to aid in the mitigation and ultimate eradication of this stigma.
While it is true that many factors influence stigmatization, a prominent one is lack of education on the topic. In the case of HIV, it was found that in areas where education and information surrounding HIV was absent or lacking, the prevalence of stigma in those communities was higher than in areas with access to knowledge or where people living happy and healthy lives while having HIV is a common occurrence. Considering this trend, health care workers should focus on health education regarding HIV. Health care workers should advocate the treatments, preventative measures, and coping mechanisms to living with HIV in order to promote awareness that it is possible to live healthily and not be infectious while having the disease. Health care workers should also act to reduce their own possible internalized stigmas towards HIV and not neglect to provide emotional and psychological support for not only the patient but also their family. By giving people the opportunity to learn and understand that HIV is not merely a ‘death sentence’ or a symbol of ‘promiscuity and sexual deviance’ but rather a manageable illness that is not a direct indicator of a person’s morals and ethics. This will help ensure that women living with HIV will be condemned to a life of discrimination and ostracization and as health professionals it is one’s duty to support and aid patients wherever possible.
In conclusion, disclosure of status among women living with HIV is an arduous task for two reasons: the disruption of women’s perceived identity and the stigma thrust upon them due to this disturbance. The combination results in a social barrier being created where women are excluded from communities, shunned, and can even incur financial problems due to loss of employment, thus reducing the likelihood of disclosing their positive status to those around them. This barrier can be greatly reduced by health professional though active education within communities, as studies found that areas in which HIV education was minimal showed the highest prevalence of stigma. These efforts by health professionals will alleviate or potentially remove this social barrier placed upon women living with HIV, thereby increasing the disclosure rate.