A Column for Women: Among Ourselves ...

An Emerging "Invisible" Community of Women With HIV

The calls have come in one or two at a time, then none for weeks. Then a few at a time, with a few more staggered calls over weeks or months. The pattern has remained fairly steady for the past several years. The callers are women who are HIV-positive who are aware of what it might mean and usually aware of how they became positive. They are trying to acquaint themselves with all that they need to know to cope and make decisions.

Feeling Alone

Sometimes their HIV diagnosis is known to no one but a doctor, and maybe a husband or friend. Some of these women have told few friends or family members. Some who tested anonymously have told no one. They alone know their status.

They call after reading this column, or another article, or after hearing a hotline number on the radio. They call with a variety of questions, concerns, fears and desires. For a long time, the calls came from various places throughout the Southland. Now that this publication has gone on line, the calls from women seeking women's resources and women's support come from across the country.

A Delaware woman: "I was just diagnosed and I need to find a doctor. I don't want to call locally. It's a small town and I can't go to anyone here."

A Utah woman: "All my brothers and sisters are married, and my family is pressuring me as well to settle down and have children."

Why Tell Anyone?

One woman who has been HIV-asymptomatic for five years watches the new protease inhibitors with great optimism.

If a new class of treatments is developed to control HIV before she becomes symptomatic, she reasons, why tell anyone? Right now, only her doctor's office, the lab and her husband know her diagnosis. If that doesn't have to change, it won't.

From a mother in Southern California: "My seven-year-old comes home from school saying terrible things that he's picked up from other kids about people with AIDS. Kids are talking about this. What am I supposed to tell my son?"

A young woman in East L.A. who has only had one boyfriend: "I can't tell anyone about this. No one will ever ask me out again."

The plaintive truth about the women who call me or my co-workers makes the ongoing nature of some basic problems clear.

  • The number of women "out there" who are living with HIV. Women who are in the closet about their HIV status are often statistically invisible. AIDS-service organizations don't see them. Unfortunately, all too often, neither do HIV specialty medical practices or clinics, simply because many people still don't know where to go for expert help, or fear to be visible.

  • The difficulty of getting information while "outside the loop" of HIV information. The basic knowledge that many of us in the HIV community take for granted -new treatments, new programs, where to make connections- disseminates within a framework of connected people. Recent conversations with several women prove to me that making that connection can still be a very hard step for a lot of women. Why does a Delaware woman who is looking for a referral to a local doctor call Los Angeles from a phone booth in Delaware?

  • The incredible, agonizing isolation. Many women do not know another HIV-positive woman. Many remain unaware that HIV support groups for women exist or that whole networks of positive women interact to support each other.


At a recent professional forum, I spoke with a clinical psychologist, a highly trained and experienced woman in her 40s who specializes in family practice. She had come to the forum because two of her patients are HIV-positive, and she wanted to learn more. After the forum presentations, she commented: "Are that many women really HIV-positive? I never knew there were HIV-positive women who are having babies."

It is a powerful statement, coming from a mental health professional in a society where HIV has blitzed the popular media for at least 10 years. If that's what a trained and experienced psychologist thinks, what does a teen-age girl think?

Los Angeles Shanti has published a revised edition of its Directory of Services for Women and Children Affected by HIV/AIDS in Los Angeles. The directory is available in English and Spanish. To request a copy, call (213) 962-8197 or (818) 908-8849.

Among Ourselves . . . invites letters and columns from women in the community who are affected by HIV. If you are interested in writing a column, call Rebecca Solomon at (213) 993-1436.

Among Ourselves . . . is a monthly column by members of AIDS Project Los Angeles' Women and HIV Advocacy Committee. Rebecca Solomon is an APLA case manager who writes extensively on women and HIV.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).