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Disease of Isolation : For Women, AIDS Brings Special Woes

January 08, 1988|MARLENE CIMONS | Times Staff Writer

WASHINGTON — Pat is white, a former high school cheerleader, a one-time career professional and the happily married mother of a toddler. Judy is black, a former prostitute and recovered heroin addict, trying to raise a teen-age son in the middle of a nasty divorce.

Unlikely as it might seem that these two Los Angeles women would ever even meet, they have become the closest of friends. Their bond: Both have AIDS.

"We were both reaching out for somebody to talk to," Judy said recently of her friend. "I bounce things off her, and she bounces things off me. And when I say, 'I'm tired,' I don't have to explain to her what kind of tired I'm talking about."

More Fortunate

Pat and Judy--not their real names--are more fortunate than many women in this country with this deadly disease: They have each other and the strong mutual support provided by their unique relationship. But for most women with AIDS, who numbered 3,601 as of Dec. 28--only 7% of the total of adult cases--AIDS remains "a disease of isolation," as one physician put it.

Moreover, some research indicates that women with AIDS may be falling sicker and dying faster than men with the disease, though the reasons for this have not been determined. And AIDS has forced women to confront especially poignant issues, such as reproduction and the struggle to hold families together, that are not often faced by men with the disease.

Many women with AIDS must grapple with the problems of poverty, racism and drug addiction, and they often leave behind surviving infants and children who may also be infected or ill.

'Different Dilemmas'

"Women come in with different emotional dilemmas from those of men," said Dr. Michael Gottlieb, the former UCLA researcher who first identified AIDS as a new medical syndrome, who is now in private practice. "Women are the ones who tend to hold together households in general, and this makes it harder to do so."

Gottlieb, who treats Pat and Judy, added: "Any woman who is ill faces that struggle, but it's especially difficult for women with AIDS. They are isolated and they are struggling with issues of intimacy and rejection."

To a large extent, the isolation of women with AIDS may, in part, be caused by their diversity. While the majority of AIDS in women has thus far occurred among low-income minorities--infected through intravenous drug abuse or by their sexual partners--their numbers also include middle- and upper-class women, professional working women like Pat, who contracted AIDS through a blood transfusion. Unlike gay men, who make up the majority of cases in the country, women with AIDS have never had an established network.

Thus, many of the AIDS service agencies and support groups that sprang up in response to the epidemic evolved from the existing homosexual rights community and are typically geared more toward the needs of gay men. While women with AIDS are welcome, they are often unaware that such resources are available, or they do not always feel at ease in these groups.

"I don't mean to bad-mouth the organization I go to--they have provided me with excellent service--but it's really a gay (men's) group," said Judy, who believes that she contracted AIDS by sharing contaminated hypodermic needles. "It's oriented toward gays. Sometimes I run into guys there who aren't really comfortable with a woman being there. That's kind of hard when you're a heterosexual female and you're getting exposed to this whole other life style you've never experienced."

Cite Biological Factors

But the special problems experienced by women with AIDS are not confined to the social and emotional. Some have speculated that there may be biological factors involved, such as hormones, to explain why women seem to be dying faster than men from AIDS. Others believe that women are dying faster simply because they are frequently being diagnosed later in the course of their disease.

Many women with the disease do not have access to quality health care or, in cases where their partners and children are also ill, "are doing what they've always done: taking care of others before they take care of themselves," said Catherine Maier, the women's specialist at the San Francisco AIDS Foundation, who runs a support group for women with AIDS, one of only a few in the nation.

Also, physicians may not always recognize AIDS immediately. They are unaccustomed to seeing AIDS in women and those women who do not consider themselves at risk do not always raise the possibility of AIDS with their health-care providers.

"I had the classic symptoms, and no one knew it," said Tema Luft, a 34-year-old Baltimore telephone company employee with AIDS-Related Complex (ARC), which carries a different set of symptoms but can be just as debilitating and fatal as AIDS. Luft believes that she was infected by a bisexual man she dated for two years.

Diagnosis Took 6 Months

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