Disease of Isolation : For Women, AIDS Brings Special Woes

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

“I had swollen lymph nodes, night sweats, extreme fatigue,” Luft added. “They thought it was cancer or my nerves. It took six months to figure out what was wrong with me. I didn’t even know what ARC was when they told me.”

Once diagnosed, there are few places where women can go to discuss the kinds of issues that specifically affect them. There are many AIDS support groups but, again, they often deal with issues of homosexuality. Pat and Judy met in a women’s support group in Los Angeles but such groups are rare. They meet once every two weeks for 90 minutes.

“It gives us a place to go and talk,” Pat said. “We can come out of the closet, in a way, with each other. We talk about all the difficulties we’ve been having--we’re concerned about shock and rejection from other people. Knowing about the diagnosis makes other people uncomfortable.

“To me, it’s really something very special,” she added. “It’s a strong thing we share, this disease that takes up so much of our lives. When I leave, I feel a sense of strength from having been with these women. It makes me feel wonderful to go there. Last time, one of the women was having a very hard time and feeling very alone. It made me feel wonderful to say: ‘I’m here and I really care about you.’ With this disease, you need all the love you can get.”

Plans Second Group

Maier, of the San Francisco AIDS Foundation, runs one women’s support group, made up of minority women, most of whom were infected through the sharing of contaminated hypodermic needles during intravenous drug abuse or by their sexual partners. She is planning a second support group for working women.

“I started the first group because I was seeing three women a year ago, and they were very isolated,” she said. “I began to realize there were different needs and issues and concerns, and these women were isolated because they had no commonalities. I’ve also talked to about 50 anonymous women by phone--usually white, middle-class, successful women who are in total shock and denial. They had no idea they were in a risk group. They got it from partners or a husband and are even more isolated because their families and doctors keep it a secret. Society will have to remove the stigma before these women come forward.”

One of the most painful and difficult issues faced by infected women involves the question of reproduction. Infected women have a high probability of transmitting the AIDS virus to their unborn children. And pregnancy, which typically changes the mother’s immune system, is believed to accelerate the progression of the disease. Thus, infected women of childbearing age must often make crucial and heartbreaking decisions.

Advises Against Pregnancy

“I advise women who are infected not to get pregnant,” said Dr. Robert T. Schooley, an AIDS specialist at Massachusetts General Hospital in Boston. “The issue of adoption comes up from time to time, and my advice is to defer.”

Pat, 35, who was infected in 1983 from a blood transfusion during a hysterectomy, and her husband decided to adopt a child. They made this decision knowing that she was infected and might become ill with AIDS. Pat had learned early in 1984 that she was infected. Although the blood test to detect infection did not become available until 1985, Pat’s blood had been analyzed experimentally in studies of the test procedure.

“We really agonized over whether to adopt, but in those days they were saying that only about 10% of those who were infected would get AIDS,” she said. “At the time, I thought I was going to be able to beat this thing. I wasn’t really thinking about dying.”

Her marriage is a solid one, and she has a very supportive extended family, including her parents. Gottlieb, her physician, encouraged her to initiate adoption proceedings.

She and her husband received their child, now 2, in the spring of 1985. This last spring, Pat came down with pneumocystis carinii pneumonia and was diagnosed as having AIDS.

‘Had Tremendous Guilt’

“I had tremendous guilt about what my child had to be going through,” she said. “But I know my child will be taken care of.”

While hospitalized, Pat talked and sang songs into a tape recorder for her child. She said recently that she is trying to prepare her child “to be independent and a strong person,” should Pat not survive.

“I know I can die from this,” she said. “The only way I can cope with it is by knowing that I’m making my child as strong as possible.”

Even knowing that Pat would come down with AIDS, Gottlieb said recently, he would again recommend the adoption “without hesitation.”

“She’s had almost three years with this child, and the child has had almost three years with her,” he said. “There’s a strong family with a participating husband and grandparents. If her health fails, this child will not be an orphan.”

Some women are not as fortunate. They do not always have supportive husbands and extended families.

“One of the big questions that always comes up is custody of the kids,” said Maier, of the San Francisco AIDS Foundation. “Is it better for them to keep their kids when they are sick or to give them to someone else so their kids don’t have to watch them become sicker? The answer often depends on the strength of the woman’s support system.”

Son Does Not Know

Judy, the former prostitute and recovered drug addict, has a teen-age son who does not yet know that she has AIDS. She is struggling with the question of whether to tell him. She believes that she must tell him. Her own mother, however, is urging her to shield him.

“Her argument is that he’s not going to respond like an adult,” Judy said. “I don’t expect him to respond like an adult. I expect him to respond like a child.

“He’s not crazy,” she added. “He knows I’m in and out of the hospital. He knows I get blood transfusions. He knows something is wrong with me.”

She feels that she can talk to him--”we’ve talked about drug abuse; he knows I’ve been involved with drugs and drinking, and he knows that’s not what his mom does anymore”--but she said she often worries about rejection, a common fear among women with AIDS.

Although such anxiety often revolves around children, it is more often associated with husbands and other sexual partners. In part, there is the fear of transmission. Some medical experts believe that transmission is less efficient from women to men, but most have found that the difference is negligible.

Points to Africans, Haitians

“It’s important for men and women not to get the message that the efficiency is so low that one has little to worry about,” said Schooley of Massachusetts General Hospital. “The African and Haitian experience (where heterosexually transmitted AIDS cases occur nearly equally between men and women) argue strongly that the rates in each direction are appreciable.”

But even when transmission is not an issue, there are often severe psychological and emotional roadblocks to intimacy when one of the partners, particularly the woman, has AIDS.

“Most women with AIDS and ARC are not interested in being sexual beings anymore,” Maier said. “They feel unloved and unclean and feel that they’ve lost this image of American femininity. These are women who are sick and losing weight--it’s another loss, a loss of body image. They talk about it a lot.”

“Nobody’s going to have a relationship with me, and I’m well aware of it,” said Luft, the ARC patient from Baltimore. “There’s no point in even trying to date. One guy even said to me: ‘I’m not going to get involved with someone who’s going to die.’ ”

Pat said that her husband has physically withdrawn from her somewhat since she became ill. He does not know if he too is infected. Although his blood has been tested for research purposes, he has asked not to be told the results.

‘No Less a Husband’

“He was very concerned at first,” she said. “He is uncomfortable kissing me, other than a peck. He’s OK sexually as long as he uses a condom, but we don’t have sex as frequently as we used to. But, fortunately, we have always been intimate and affectionate on other levels, and that hasn’t changed. He is no less supportive and no less a husband as he was before.”

Maier said that most of the women she works with exhibit low self-esteem, in part, because they are all too often stereotyped “as junkies or whores.” But, after working with nearly four dozen women in the San Francisco area in recent years, Maier said she has been overwhelmed “by their strength and courage.”

In her support group, she said, “everyone starts by talking about what’s new and what’s good. If you look around, you can always find something. And I think that speaks to the hope. We exchange information and resources. Hope and humor. They don’t want a bitch session. Things are bad enough.”