LIFESTYLES

'Oh my God, it could be me'

MARY NEMETH September 6 1993
LIFESTYLES

'Oh my God, it could be me'

MARY NEMETH September 6 1993

'Oh my God, it could be me'

LIFESTYLES

In the nearly five years since her diagnosis, 32-year-old Evelyn Hildebrandt has suffered the symptoms common to many carriers of the HIV virus: diarrhea, swollen lymph nodes, headaches and a general achy fatigue. But the Vancouver native has also experienced gynecological changes that she does not understand; and she has had hip and leg pain, a symptom that seems to be common among women with the virus, she says, but one that has not been studied. Hildebrandt has also encountered a health-care establishment that is accustomed to dealing with HIV and AIDS among gay men. “Once, I was having blood work done and a lab technician said to me, ‘You’re so brave—if I was HIV-positive I would get a gun and shoot myself,’ ” says Hildebrandt. “I was completely floored.” Women nurses and technicians “could handle seeing young gay

AIDS is striking a growing number of Canadian women

men,” she adds. “But when a young woman comes in, it’s suddenly real and personal and ‘Oh my God, it could be me.’ ”

For a growing number of women, HIV and AIDS are immediate and personal and very real. The World Health Organization predicts that women will make up half of the world’s new AIDS cases by the year 2000. Most of them will be in developing countries. But AIDS is taking an increasing toll among women in Canada, as well—from 24 new cases reported in 1985 to 68 new cases in 1991. According to the latest figures issued by the federal Laboratory Centre for Disease Control, a total of 406 women aged 15 and over have developed AIDS since 1981—six per cent of all AIDS cases in the country. And although the centre does not collect nationwide statistics for HIV infection, Dr. Maura Ricketts, the centre’s medical epidemiologist, says that antenatal studies—anonymous tests of discarded blood samples to determine the HIV status of pregnant women—indicate that AIDS is a growing problem.

Preliminary results in Newfoundland were particularly alarming: of 5,200 women tested, six were HIV-positive—and most of them came from a single health unit in eastern Newfoundland. Meanwhile, independent of that study, health officials have found 33 HIVpositive cases in the Conception Bay region—25 of them young women. Newfoundland, says Ricketts, “is the last place in Canada where I would have guessed an AIDS epidemic could happen.” The cases, adds Dr. Faith Stratton, Newfoundland’s director of disease control, “have confirmed that this is a disease that can very easily be spread among the general population.”

Until recently, most women diagnosed with the HIV infection in the United States were intravenous drug users. But in Canada, where the drug problem is less severe, heterosexual activity has always been the highest risk factor for women. In both countries, officials say, diagnosis of women is frequently delayed. “The first problem is that AIDS is often not suspected,” Ricketts says. “If a gay man walks into a doctor’s office and says that he is tired and has lost weight, the doctor will immediately suspect AIDS. If a woman walks in and says she is tired and lost weight, the doctor may not think of it.”

As well, while many symptoms and AIDS-related illnesses are the same in men and women, there are differences. In particular, says Dr. Catherine Hankins, a Montreal public health epidemiologist, HIV-positive women are more likely than women who do not have the virus to experience gynecological complications: pelvic inflammatory disease, vaginal yeast infections and abnormalities on Pap smears that respond poorly to treatment. Among AIDS-defining illnesses,

■ ¿ women rarely get Kaposi’s sar■ £ coma, a skin cancer common 11 among male AIDS sufferers. “ They do tend to get more herpes, yeast infections of the esophagus and extreme weight loss.

About six years ago, Evelyn Hildebrandt suddenly developed multiple vaginal infections and throat infections, as well as allergies. But only after telling her doctor a couple of times that she had been in an HIV-risk situation (she will not say what that was) did her doctor agree to test her. “She did what most physicians do,” says Hildebrandt. “She reassured me that I wasn’t at risk, she tried to calm me.” Still, Hildebrandt says that she was diagnosed early for a woman—in early 1989, just one or two years after she was infected.

A year after her diagnosis, Hildebrandt met a man at a science fiction club—“it’s goofy but true,” she says. She told him about her HIV status on their second date. “He said the disease was scary but not scary enough not to pursue the relationship,” says Hildebrandt. Three years ago, they were married. “It’s been kind of difficult. At the same time that we’re trying to build a marriage and work through all the things couples have to work through, we are also trying to come to terms with the ending. Our house life is often oil and water, a lot of laughter and a lot of tears.” She and her husband use safe sex practices, she says, but even that can have an emotional impact. “Having to use a barrier is a reminder—it becomes a symbol of the disease.”

Hildebrandt quit her job as a claims examiner with a health insurance company last year because of fatigue and other HIV symptoms. Recently, her T-cell count—an indicator of immunity—has been falling. And a friend, diagnosed at about the same time, came down with double pneumonia; the friend recovered, but “it got me feeling vulnerable,” says Hildebrandt. She is also concerned about who will care for her. She has read that 90 per cent of women with disabilities or illnesses are abandoned by their mates. “It’s quite frightening that the more ill I become, the more likely I could be abandoned,” she says, adding that when she discusses it with her husband, he is upset that she would even think he “could be one of those.”

In fact, part of what distinguishes HIV-posi-

tive women from their male counterparts is not medical, but social. “They want to be good mothers and partners,” says Jane Allen, co-ordinator of the Women and AIDS project in Nova Scotia. “If their partner is HIV-positive as well, women tend to take better care of their partners than themselves.” And for infected parents, especially single mothers, concerns about anonymity could prove a barrier to seeking support. Says Montreal’s Hankins: “Many of these women are sole providers, they don’t want to risk losing their jobs, or risk the stigmatization of their kids if their status is known, so they will tend not to reach out for services.”

Janet and Randy Conners of Dartmouth, N.S., both infected with HIV, went public with their story, but only after they discussed the decision with their son, Gus. So far, says Janet Conners, 13-year-old Gus has had plenty of support from friends and relatives. Janet contracted HIV from Randy, a hemophiliac who got the virus through blood products. Randy Conners recently received compensation from the Nova Scotia government. Now, the couple is struggling to come to terms with Gus’s future. “We still hope we’ll be there for his high-school graduation, his university, his marriage,” says Janet Conners, 37. “But it’s angering to think we’ll probably miss out.” They are making plans to have relatives care for Gus. “There’s a lot of guilt involved,” she says. “The guilt of leaving him through death before we have to, of not being able to take care of him, of not having the energy to be the kind of parents that we wanted to be.” She once thought of trying to make Gus not like her “so that if I die, it won’t bother him so much,” she says, beginning to cry. “They’re stupid, panicky things, trying to protect him, trying to make this as easy as we can.”

For some women, it is not the responsibility but the absence of family that is most difficult. “Gay men have a lot of social support,” says Hankins. Even if they are sometimes rejected by their families, she says, “they can talk to other men who’ve gone through the same situation. Our women can’t talk to anybody.” That problem is especially acute in smaller communities that, unlike major centres, do not have networks of HIV-positive women.

One Winnipeg woman, who asked to remain anonymous, has been attending an HIV support group, but all the other members are gay men. “I just don’t feel a part of them,” she says. “The guys have got each other, even if they don’t have a family.” The woman’s own family visits her infrequently, she says, and some of them will not let her touch their children. Now nearly 40, she has spent much of her life on the street—she is one of the minority of Canadian women who contracted HIV through intravenous drug use, although she says that she has been straight for three years. “I want to live before I die, and remember everything,” she says. But there remains an added stigma attached to needle-spread HIV. “It hurts that the hemophiliacs are getting a little bit of sympathy—but we still are to blame,” she says. “The disease itself isn’t as bad as the loneliness and being ostracized. I just wish people would understand that we’re not dangerous, we’re human, we’re lonely.”

MARY NEMETH

with SHARON DOYLE DRIEDGER in Toronto