Disclosure of HIV-Positive Status: Five Women's Stories

Abstract

The Human Immunodeficiency Virus (HIV), the virus that causes Acquired Immune Deficiency Syndrome (AIDS), is one of the most severe health threats in this country. From June 1981, when the first case was diagnosed, to December 1994, there were over 440,000 cases of AIDS reported to the Centers for Disease Control, with 61,400 or about 14% of these cases women (CDC, 1994). Given that symptomology of women's HIV infection is inadequately researched, it has been suggested that underreporting of HIV infection in women is occurring Corea, 1992). Regardless, the incidence of HIV infection in women continues to rise steadily. For example, from July 1991 to June 1992, 13.7% of reported AIDS cases were women. This percentage has increased each subsequent year, with women comprising 15% of the total cases from July 1992 to June 1993 and 17% from July 1993 to June 1994 (CDC, 1992, 1993, 1994). Considering that women made up almost 23% of reported HIV infection cases (from states with confidential reporting laws) through December 1994 (CDC, 1994) and assuming that HIV will eventually progress to AIDS, women are likely to constitute an even higher proportion of future AIDS diagnoses. Although heterosexual transmission accounts for only 3% of HIV infection cases among men, 36% of women with HIV contracted the virus via heterosexual intercourse (CDC, 1994). When women and HIV are discussed, three groups of women are most studied: prostitutes, injection drug users, and women of color (Welch Cline, McKenzie, & Glassman, 1992. Although these subgroups are important populations for research, scientists have typically viewed women in relation to others, primarily their sexual partners and children, rather than as significant victims themselves of this epidemic (Welch Cline et al., 1992). Women as transmitters of the disease to men and babies are examined more often in the social science literature than women as victims of the disease (Anastos & Marte, 1983; Cohan & Atwood, 1994; Corea, 1992; Hunter, 1992). With few exceptions, little research concerning women and disclosure in the context of HIV has emerged. There has been no research examining this issue specifically from the perspective of HIV-positive women, yet understanding women's experiences in disclosing such information is important for a number of reasons. First, disclosure is necessary for support services to be garnered. These services can take the forms of medical information and care, social services, mental health services, and emotional support from family and friends. Without disclosure, an HIV-positive woman may not be able to secure the services and support she wants or needs. Second, disclosure is necessary to reduce the perpetuation of women as invisible participants in this epidemic. Examinations of the role of women in the HIV/AIDS epidemic have been limited to women's relationships with others (e.g., prostitutes, mothers of infected children). For women to continue to gain visibility within the scientific, medical, and social services communities, disclosure of their serostatus must be addressed. Although the reasons for HIV-positive women to reveal their status are important, women may experience difficulty in disclosing. The sources of these difficulties may be twofold. First, people with HIV are more stigmatized than people with diseases such as toxic shock syndrome or Legionnaire's disease (Hughey, 1986), cancer and coronary disease Walkey, Taylor, & Greene, 1990), or leukemia (St. Lawrence, Husfeldt, Kelly, Hood, & Smith, 1990). This stigma may center around the perception of AIDS as a gay male disease or its association with activities such as infidelity and injection drug use. Given the possibility of stigmatization, it is understandable why HIV-positive women may choose not to disclose their status. Second, disclosure of one's HIV status could put women at risk for losing employment, housing, health insurance, friends, or custody of their children. …