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After All That's
Unsaid & Undone

Autumn '93

The Women It's 9 P.M. on Tuesday. Patricia Taylor arrives at her doctor's office. She has been treated for over three years now, always at the same odd hours. Nobody notices her coming in, nobody sees her going out. Patricia is infected with HIV. She wants to keep her job. She wants to keep her friends. She doubts she would get any support from family or friends if they knew about her HIV status.

Sylvia Conrad lives in a cottage by her mother's house. She is dying of AIDS. She counts on the support of relatives and a few friends. Her long-time friends, who know about her disease, don't call her anymore. This doesn't hurt as much as it used to. She has learned to enjoy the friendship of people in the local AIDS/HIV community. "They are always there for me", she says, in a sad voice. Her picture is in the newspaper, half darkened by shadows. Behind her left shoulder, the eyes of a little boy appear, wondering why he isn't in his mother's lap instead of hidden by her figure. Sylvia doesn't want the neighborhood children to stop playing with her four year old son.

Back home, after a couple of weeks in the hospital with pneumocistis-pneumonia, Mary Allen is frantically scrubbing the floors. "You should be resting and building up strength," a friend says, alarmed by the strenuous effort it takes the 90 pound woman to get the job done. "If I don't do it myself, it won't get done!" Mary is not used to asking for any help. She has to raise a three year old. She lives with a husband who drinks constantly and beats her sporadically. She fights the disease, alone, with no outside help. She struggles to manage it, but, she neglects her own health and focuses on her child.

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Erika Raider was going through a divorce when she received an HIV positive diagnosis. Alone and scared, she kept her disease a secret. She is trying to protect her two daughters and their right to live free of discrimination. She thinks her romantic life is over. When asked out on dates, she offers lame excuses. She doesn't want to be hurt by an insensitive man. She faces her destiny alone. She has started drinking.

After losing her husband and two children to AIDS, Ruth Tremont is alone. Terribly alone. Nobody knows she is HIV positive except for a few people in a support group that she attends every week. She misses the companionship of her husband. Sometimes she blames herself for the death of her babies. Her career as a writer keeps her going, though sometimes she just wishes she was dead, too.

These are stories of some of the women I have met on my journey through the AIDS world. Women no different than our mothers and grandmothers, yet, they have been discriminated against and oppressed. Their challenge is a riddle: How does a woman live with what is still seen as a male disease in a male-oriented world?

A Little History

The stigma attached to AIDS, the "gay men's disease," has also been cruel on women. Many women were dying in the late '70s of pneumonia, cervical cancer, and other illnesses complicated by "mysteriously" suppressed immune systems. Yet, it was not until 1981 that a case of AIDS in a woman was first reported by the Centers for Disease Control (CDC). I hold the CDC responsible for initiating the politics that has consistently ignored women in the epidemic. The CDC is to blame for keeping statistics artificially low, for women dying of AIDS and never receiving their Social Security benefits, for inadequate funding to deal with this epidemic, and for stigmatizing this disease from the beginning.

The CDC's refusal to address women's issues led to the overall perception that women do not get AIDS. Misinformed doctors treating women with recurrent vaginal infections did not consider recommending an HIV test. As a result, HIV diagnosis in women frequently occurred only after their male companions got sick, or until their condition progressed to an irrefutable AIDS level. To this day, women still die twice as fast as men, after HIV diagnosis.

If we have to blame someone for it, we should be blaming the government of the United States, the CDC, and the FDA for so many errors in managing the epidemic.

Created in 1987, founded by the NIAID (National Institute of Allergy and Infectious Disease), the ACTG (AIDS Clinical Trial Group) is the system of cooperative medical institutions conducting federal clinical AIDS drug trials. By the FDA and ACTG criteria, "women of childbearing potential" were excluded from clinical trials. This exclusion is one reason why there is so little data about treatment for women. When Sylvia Conrad, six months pregnant, was diagnosed with HIV (after the death of an ex-boyfriend), the doctors were undecided about whether or not to treat her with AZT. They were concerned about the unknown effects the drug may have on the fetus. They never worried about the effects of the drug on her, though they were just as unknown. Women had been excluded from the early clinical trials of AZT.

With the rising number of women with AIDS, and the subsequent rising numbers of babies born HIV-positive, some people started to pay attention to this issue. But even after recognizing that women do get AIDS, our health issues were not properly addressed. Women are still portrayed as carriers, not sufferers of the disease, vectors to men and fetuses.

This attitude became clear in 1988 when NIAID awarded 29.4 million dollars for research on transmission from mother to fetus. The institute's AIDS agenda proudly announced: "The awards reflect the institute's concern about the recent sharp rise in numbers of HIV-infected babies" - innocent babies born from guilty mothers. No programs to study HIV transmission to women were announced. No programs to prevent HIV transmission to women were announced. At the same time, pregnant women seeking treatment continued to be turned down by drug programs.

Vectors of the Virus

Women with HIV disease have been stigmatized as drug users and prostitutes , people to be avoided rather than assisted. The scientific interest in AIDS and prostitution focused on the danger of contamination of the innocent men that use their services. These innocent men, they surmise, will then contaminate their wives, who are regarded as mere vectors to innocent babies. Male-to-female transmission of HIV in sexual intercourse is ten times more likely to occur than in the reverse. Yet, the fact that men can endanger women in prostitution by infecting them with HIV, has never been an issue.

Outraged by the overall lack of attention given to the AIDS epidemic, a group of activists started what became a worldwide organized movement: The AIDS Coalition to Unleash Power (ACT UP). By 1988, ACT UP had identified the lack of information regarding women in the epidemic as a factor in the increasing number of women with AIDS. ACT UP has been recognized as the most successful health activist organization, although a lot of ground has yet to be covered to reach its final goal: a cure for AIDS.

Under intense pressure from activists, the CDC finally consented to include invasive cervical cancer in the list of AIDS-defining illnesses (January 1993). Nevertheless, the CDC still chooses to omit a number of other opportunistic infections that affect women.

Neglect

After thirteen years of an epidemic and eight years of organized activism, women with HIV and AIDS are still being portrayed as carriers, junkies, prostitutes, and sinners who infect babies. In reality, we are human beings who are dealing with a disease, caring for loved ones and in need of social services and counseling. Basic medical questions about women remain unanswered: What is a normal T-cell count in a woman? Why is cervical cancer associated with poverty? What are the effects of pregnancy to the progression of the HIV disease? Only 5% of the ACTG's are directed at women's health; nearly 40% are directed at children's health.

The New Age Witches

After all that's been left unsaid and undone, HIV is now spreading faster in the female population than in any other group. AIDS is becoming the leading cause of death in women, yet women are still being charged accountable; for their irresponsible behavior; for not demanding that their lovers wear a condom; for not reminding their doctors to order HIV tests, and so on.

The association of women with promiscuity and AIDS has been perpetuated by a sensationalistic media. We've received the message a thousand times: "Promiscuity spreads AIDS"; "Mothers (bad mothers) contaminate their children"; "Magic Johnson was with the wrong woman". The bashing is sometimes subliminal, but ever-present: Shame! Women with AIDS have become the new-age witches.

That's the image that has been ingrained in our minds....the day that we get an HIV positive diagnosis - the day when "they" becomes "I". Then, the connection to promiscuity and AIDS hurts. "But I'm not promiscuous", we try to argue within our own minds, "I am not guilty!" Two or three media-showers later, we ask, "Or am I...?"

What we've learned from media and government agencies triggers a self-esteem crisis at one of the worst moments in our lives, when we should be gathering strength to deal with the many facets and losses that accompany AIDS. Instead of getting stronger, we get weaker. We're undermined by feelings of guilt and humiliation. I call this "the sociological inner side-effect of HIV on the female population". We often avoid the love and support necessary to overcome this crisis by trying to protect ourselves from judgments and social embarrassment. Like Patricia, we try to hide ourselves, often compromising proper healthcare, afraid, alone, and ashamed.

Despair

Self-punishment compels us to care for sick loved ones in silence, not asking for help from family or community. We justify our self-imposed loneliness by convincing ourselves that having a sex life will never again be possible. "I am not desirable anymore", says Erika Raider, finding echoes in so many other hearts.

These destructive feelings are not foreign to me. When diagnosed with HIV in October 1990, I decided to dedicate myself entirely to the care of my husband. My own health care didn't concern me; I didn't see myself as a priority. Thomas was sick, not me. I would cook and clean for him, drive him around town, light his cigarettes, nurse him, medicate him, help him get up from the floor every time he fell down, wipe his tears when he cried, even while I cried myself.

I didn't tell my family about my disease, I was so ashamed. I thought I'd failed as a woman and was now paying for it. I didn't know any other woman with HIV. I was isolated in my shameful disease.

With Thomas' death, all the weight of my own disease fell on my shoulders. Living alone with HIV seemed worse than death itself. At that point I could've lost myself in low self-esteem and isolation. Instead, I decided to fight those feelings and recover my dignity as an HIV positive woman.

Empowerment

I joined a support group. I met other HIV positive women, like myself. We got to be friends. I was not alone after all. I told my father about my disease. He still loves me. I told my friends. My true friends supported me. Others started to avoid me - but they were not important anymore - I was. I felt strong again. A nice man asked me out for a date, I accepted. I disclosed my HIV status by candlelight, anticipating his astonishment. We were married soon after.

I asked a doctor at the clinic why, in the two years I'd been treated for HIV infection, had I never been given a pelvic exam? "If that's what you think you want," he replied, inflating his chest like a smug pigeon, "I can give you one." I didn't care for his attitude. I got treatment in another clinic where the gynecologist was always present, where no one considered a pelvic exam an indecent proposal. I am strong now. I'm a born again HIV positive woman.

It would seem that taking action over my own issues would make my life even more difficult. It did not. The more I opened myself up to the ones I loved, the more love was returned.

Similar things happened to other women. When Sylvia Conrad finally disclosed her disease to her neighbors, they did not forbid their kids to play with her son. Instead, they brought her cakes and helped with meals when she got sick. Sylvia did not have to worry about hiding the nurses who went in and out of the house during the last days of her illness.

We don't need to face this disease alone, but help can't reach us if we don't want it to. There is help available (despite the lack of resources for women) and we deserve to get it.

AIDS is a disease. If we have to blame someone for it, we should be blaming the government of the United States, the CDC, and the FDA for so many errors in managing the epidemic. We should blame the media for misinforming us about prevention and risks. We should never blame ourselves. We already have too much to deal with. We need no guilt. We need no shame.




  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 

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