The statistic is front page news.
Women make up more than 50 percent of AIDS cases worldwide.
The Women’s H.I.V. Outreach and Education Program at the Actors’ Fund exists to support all women in the music and entertainment industry who find their lives and the epidemic crossing paths. It is there for women living with H.I.V. so they can have a safe place to talk about the challenges of living with their infection. It is there for women who want information and support around the testing process, safer sex and risk assessment. It is there for women who have partners living with H.I.V.
WHAT ABOUT THE STIGMA?
When the media portrays AIDS in America as a manageable, chronic disease, it ignores the professional and interpersonal implications of H.I.V.’s stigma. AIDS is hard to talk about.
For example, a partner of a well-known musician has been living with AIDS for almost twenty years. She has kept her diagnosis a secret from her friends. She is afraid that if people knew that she had AIDS they would assume that her partner also had H.I.V. and his career would suffer. She comes to a support group at the Actors’ Fund so she can talk freely about living with AIDS in an environment respectful of her need to keep the secret.
Another woman was infected by her boyfriend. She was not aware that he had a history of IV drug use. Two years into their relationship she learned of his infection when he was hospitalized for respiratory problems. Fearful of the effects the stigma of AIDS would have on her career, her positive status and her boyfriend’s illness is known only to medical and mental health professionals.
A third woman said she thought she had met the man she would marry. After they moved in together he tested positive for H.I.V. when he went to his doctor concerned about reoccurring fevers. Her boyfriend asked her to keep his status secret for the sake of his career. She came to the Fund for support during her testing process and to talk about her fears for the future. After she tested negative she found the stress of keeping her boyfriend’s H.I.V. status secret more than the relationship could tolerate. They separated less than a year after his diagnosis.
WHAT CAN BE DONE?
It can be hard for women to get help for themselves. Traditionally, women are the caregivers, placing the needs of family, friends and lovers before their own. Women often feel that their concerns are not valid or worthy of getting help. These factors, combined with the stigma of H.I.V., make it especially difficult for women to talk to helping professionals – and each other. The social workers at the Women’s H.I.V. Outreach and Education Program understand this. Services are strictly confidential.
A member of the Women’s H.I.V. Support Group says that having a place where she can talk freely about living with H.I.V. has helped her redefine AIDS. This member made an anagram out of the word “AIDS,” to show her positive outlook:
be Aware of life;
respect my Dreams and Desires;
Show up for myself.
THE NUMBERS ARE GROWING
In the U.S., the proportion of AIDS cases reported among adolescent and adult women has more than tripled, from 7 percent in 1985 to 25 percent in 1999.
In New York more than 100,000 people are living with H.I.V. or AIDS. Federal health officials have stated that almost half of those infected do not know they are living with H.I.V.
The Centers for Disease Control estimates that 75 percent of H.I.V. positive women were infected through heterosexual sex, three times the 25 percent infected through IV drug use. Surprisingly, 75 percent of the women infected through heterosexual sex did not know how their partners might have become infected. Given the increase in infected women this last statistic raises the concern that women may not know when they are putting themselves at risk. They either are not getting the information they need to protect and care for themselves or they are having difficulty practicing safer sex.
HOW TO CALL FOR HELP
For information or to talk to a social worker call the Women’s Outreach and Education Program at (212) 221-7300, ext. 138.
Elizabeth Avedon, CSW is a Social Worker at the Actors’ Fund, working in the AIDS Initiative. She is the women’s outreach and education specialist.