Part Eight:  Social Stigma

Excerpts from: Living Positively: Narratives of Forgiveness and Imagination among Women with HIV. Copyright © 2010 Hamaseh Kianfar, Ed. D

It is the time to address the stereotypes and prejudices that blind us from seeing and understanding that HIV is an issue that collectively and universally affects us all.

We need to get rid of the stigma around HIV. We need to go out there and support  one another. Putting the word out, education others.   African-Americans need to stand up and not be ashamed of it. Stop being in denial.

Conversation Partner, 2009.

HIV-related stigma has been associated with being stereotyped and feeling separated from others and, in turn, has caused a loss in social status and discrimination (Galvan et al. 2008: 424). Even in 1987, during the early stages of the HIV/AIDS epidemic, Jonathan Mann former director of the World Health Organization’s programme on AIDS, stated that discrimination and denial continue to be a challenging obstacle in dealing with HIV/AIDS (Parker 2003: 1-28).  According to Dr. Peter Piot, many countries then and even now still

viewed AIDS as being a dirty thing.  The prejudged idea for many of these countries is that AIDS is contracted through sexual intercourse, a private act that is not talked about either because of religion or other socio-cultural factors (Piot 2008: 14). In a Frontline interview that was aired on May 30, 2006, Dr. Piot stated that, “[HIV transmission through sexual intercourse is] the most difficult to control because it’s a private behavior, and it is associated with stigma, with shame in many societies, if not all”  (Frontline: The Age of AIDS: Interview with Peter Piot 2006). He discusses how homosexuality for example, is against the law in many places and when you have countries such as China, Malaysia and Indonesia who have looked at homosexuality as taboo how can you effectively talk about prevention? AIDS cannot be discussed for fear of shame or imprisonment, making protection and prevention difficult.  When asked what moved him to take on the role of executive director of UNAIDS, Dr. Piot stated, “there is this disease that kills young people and they had sex somewhere or another” and when they got it, “they were just left alone to die.

According to the 2008 UNAIDS Report on the Global AIDS Epidemic, 33% of countries do not have laws that protect HIV-positive people from discrimination. Furthermore, only 26% of these countries reported having laws that protect men who have sex with men against discrimination and 21% report of these countries have laws that protect against the discrimination of sex workers (UNAIDS Report on the Global AIDS Epidemic 2008). Laws that protect against the discrimination of high-risk groups are necessary for preventing the spread of HIV and for protecting those who are already infected.

In the United States, many HIV-positive women have reported stigma from a variety of sources, including family members, health care professionals and the broader community (Galvan et al 2008: 424). The source of HIV related stigma and discrimination has often been associated with individuals who are assumed to be from a marginalized group i.e. homosexual men, promiscuous women or sex workers.  Many HIV-positive individuals may be fearful to reveal their status because others may make assumptions about their behavior or lifestyle further adding to stigma, misconceptions and discrimination (Parker 2003: 1-28). Research suggests a relationship between stigma associated with HIV and the level of emotional support HIV-positive women receive from their social support network.  Studies show that the more emotional supported HIV-positive women have felt, the higher their self- esteem and self-confidence (Galvan et al 2008: 424).  Social support is essential in helping many of these women feel valued and is often associated with helping them learn to manage their HIV status in a healthy way.  The many medical challenges facing HIV-positive women, in conjunction with a lack of social support and stigma, can cause psychological distress to many women living with HIV. In a study done by Catz et al. (2002: 53), HIV- positive women reported higher levels of depression, stress and anxiety than the community group. Higher levels of distress not only influence quality of life, but also are linked to poor adherence to a medication regimen schedule.  The most frequent mental health diagnosis associated with HIV is adjustment disorder with features of anxiety, depression or mixed mood (O’Dowd 1991: 615-619). Several studies have shown that the prevalence of clinical depression among HIV-positive individuals is 22%-45%, whereas for the general population it is estimated to be about 17% (Penzak 2000: 376-389), (Kessler 1994: 8-19).  Although few psychological studies have looked at women living with HIV and AIDS, the studies that have been conducted suggest that HIV-positive women experience higher levels of psychological distress than HIV- positive men due to socio-cultural issues, poverty, childcare responsibilities, stigma and social isolation (Catz 2002: 54-55). HIV and AIDS, similar to a number of other life threatening illnesses, can affect all aspects of an individual’s life, causing them to search for new meaning or purpose (Woodard 2001: 234).  Therefore, in order to understand what life is like for HIV- positive women, it is important to look at the individual holistically, considering mental, psychological, and spiritual aspects of her being.

In a 2002 study done by Rural Health and Women of Color, it was shown that the majority of HIV-positive African-American women define spirituality as a relationship with a Supreme Being (Musgrave 2002: 557-558). In addition, the study also shows that spirituality was “associated with positive health outcomes for women, from improved perception of health status and ability to withstanding the diagnosis of HIV” (Musgrave 2002: 557-558). In addition, among terminally ill individuals, a positive correlation was also shown between faith and well-being (Woodard 2001: 234).  Spirituality has played a significant role in decreasing psychological distress and positively influencing the quality of life for many HIV-positive women (Sowell et al. 2001: 73-82). In a study published in Clinical Nursing and Research that studied 21 HIV-positive women and their perspective on managing their HIV infection, it was shown that the majority of the women felt as though God was in charge of their lives. They also believed that God allowed them to deal with having HIV and AIDS. The study went on to state that a number of the women felt that they were able to accept their HIV status because of their strong faith in God (Woodard 2001: 234).

As another decade of the HIV pandemic is upon us, it is important to orient ourselves towards understanding how HIV affects all of us. This is the time to address the stereotypes and prejudices that blind us from seeing and understanding that HIV is an issue that collectively and universally affects us all.