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HIV Positive: An Uncertain Future

November 17, 1987|LYNN SIMROSS | Times Staff Writer

The woman, attractive, with short grayish-brown hair, arrived at the Westwood restaurant in a jogging suit. Fit and cheerful, she shook hands, then slipped into a booth and ordered tea and yogurt.

"I'd like to tell you what this is like," she said softly. "But you can't use my real name or some things about me that would identify me. If people find out, it would ruin my life faster than the virus will. I'd probably lose my job. Maybe my neighbors would burn my house, my insurance would be canceled and my kids would be discriminated against. I can't risk that."

The woman (call her Nancy), an administrative secretary in her mid-40s, is one of the estimated 1 million to 1.5 million Americans who are infected with the human immuno-deficiency virus, commonly called HIV, which causes AIDS. She has taken the AIDS antibody test and tested positive, but she does not have AIDS or AIDS-Related Complex.

Like others infected with the virus, she lives in a stress-filled world of life-and-death uncertainty. She hears worst-case estimates that virtually everyone infected will eventually get AIDS. She worries that co-workers and friends will shun her if they learn she tested positive. And she wonders what she can do to keep her immune system healthy until a treatment or cure for the deadly disease is developed.

What makes Nancy's anxiety even greater is that the medical community has few definitive answers for people like her. Research has focused most heavily on finding a vaccine against the virus and drugs to treat those who have developed AIDS or ARC. At the same time, education efforts have emphasized preventing exposure to HIV--not what to do if you already are a carrier of the virus.

Trying to Stay Healthy

Lacking firm answers, they often devise their own preventive treatments. They tell stories of trying to stay as healthy as possible, and of hoping that science will find a weapon to destroy the virus before the virus destroys them.

"They wonder: 'Am I going to stay healthy; is it going to be today or tomorrow when I have symptoms?' " said Hugh Rice, director of the Edelman Health Center in Hollywood, the largest AIDS testing center in Los Angeles County. "That kind of anxiety can create a great deal of pressure. Rarely, do they get up in the morning without looking for signs (of the disease)."

Not knowing can seem worse than AIDS itself. "Just the other day," Rice said, "I talked to somebody who received his diagnosis of AIDS, and he said he was glad. At least he knows now where he's going, instead of wondering every day."

"The problem with this is you are so alone," Nancy said. "I found out last December, and then I sat in bed and shivered and shook for the first three months. There was really nobody to tell, nobody to turn to.

"My doctor talked to me as if I was dead . . . I thought about suicide, but I really like living. I'd like to see my kids grow up and have kids. I'd like to have another relationship. But what heterosexual man would be involved with an HIV-positive woman?"

She blames her exposure to the HIV virus on her boyfriend of two years, who admitted only after he contracted AIDS that he'd had a previous sexual experience with a man. Her boyfriend died in March.

"I told my children, but I'm not sure I should have," she said. "It's a terrible burden. They know it's a terminal disease."

Researchers are hesitant to predict how many of those infected with HIV will eventually develop full-blown AIDS, though projections have become increasingly bleak over the last few years.

"I prefer to shy away from the overly pessimistic projections," said Dr. Michael Gottlieb, the former UCLA physician who reported the first AIDS cases in 1981. "I also am optimistic that we can find a medicine that will forestall or completely prevent the development of AIDS in those with the HIV virus."

Gottlieb, now in private practice, cited figures from a Centers for Disease Control study of infected gay men in San Francisco: Within seven years of becoming infected, 35% had developed AIDS. An additional 25% showed such symptoms as swollen lymph nodes, night sweats and diarrhea but did not have one of the opportunistic infections that define AIDS.

"The qualifier," Gottlieb said, "is that the study is exclusively gay males. We know IV drug users with the infection usually fare worse; hemophiliacs, better. We don't know about heterosexuals."

For Nancy, who has not developed any symptoms of AIDS, those kinds of statistics are foreboding. Recently, she decided she was "living in a death wish" and sought private psychological counseling. She now goes to an allergist and a nutritionist and has taken up yoga, meditation and running.

She also has begun going to a Science of Mind church in Orange County. In purse, she carries a yellow slip of paper with a handwritten Science of Mind prayer. "I read this prayer," she says, "whenever I get this thumping in my chest and think I'm going to die."

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