HIV Positive: An Uncertain Future

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.”

Nancy’s doctor has urged her to begin taking AZT, the experimental drug that has shown the most promise in treating AIDS patients. But she refuses because the treatments cost about $10,000 a year and she would have to submit the bills to her health insurance company. “Then they’d find some way to cancel me,” she maintains.

Kevin Harding, 30, learned he had tested HIV positive just a few hours before he was giving a New Year’s Eve party last year. At the end of the evening, Harding and four of his closest friends sat in the living room of his Silver Lake apartment, lit candles and talked about “what we wanted life to be,” he said.

“I told them I had just tested positive and we all cried,” Harding recalled.

Harding was not surprised when he tested positive. He is gay and already had lost two former lovers to AIDS. He says he has known 140 people who died of the disease.

After he took the AIDS antibody test, Harding says he went through a period of anger and denial and finally depression before deciding that he had to get on with his life.

He has changed his diet and takes vitamins, exercises and gets more rest. He works every day but now tries to look at his job as a hair stylist “as a hobby that makes money for me. I don’t have as much stress that way.”

He also goes to church occasionally, attends the regular Wednesday sessions for AIDS/ARC patients run by Los Angeles metaphysical counselor Louise Hay, and has participated in a weekend workshop given by Sally Fisher of Northern Lights Alternatives in Hollywood.

“I’m just doing the best I can with the information available--and remain positive about my health,” he said. “When I see somebody who is ravaged (with AIDS), I say that’s how I could look, but I’m not going to let that happen.”

Harding encountered one of the Catch-22s of HIV-infected people when he tried to participate in an experimental drug study at County/USC Medical Center.

Counts of his infection-fighting T-cells, which the HIV virus attacks in its assault on the body’s immune system, are still high. “They said I was too healthy to go on the drug test,” Harding said.

Jeff, a 37-year-old Los Angeles real estate developer, was hospitalized in 1982 with the flu. His doctors thought it was related to AIDS but were not able to diagnose the disease. In 1985, when the HIV antibody test was developed, he tested positive.

“I am healthy and I plan to stay that way,” he said, explaining that he had reduced his stress level by getting out of his business as a tax accountant. He does aerobic exercises four times a week, has changed his diet, takes Chinese herbs and goes to an acupuncturist. He also sees an allergist.

He also takes AL-721, a highly concentrated egg lecithin, but has refused so far to go on AZT. “I prefer to try the natural alternative therapies first,” Jeff said. “And I believe in attaching myself to positive energies, not negative ones. I don’t make myself crazy about it. What I’m doing will either work, or it won’t.”

Unlike Harding, Jeff has seen his T-cell counts drop since he first tested positive, indicating that his immune system is under attack by the virus. Jeff waited until the count reached a very low number before telling his father and brother, who already knew he was gay.

“I don’t know what would be accomplished by telling your family right away, unless you need support from them,” he said. “Frankly, I don’t think being HIV positive need be a cause for huge concern. If people live reasonably, chances are we’ll be able to live without going on to the disease.”

J. D., a 25-year-old college student who lives in Santa Monica, tested positive in December, 1986. A heterosexual, he blames the infection on blood transfusions he received in Europe in 1982 after being seriously injured in a motorcycle accident.

“There are not that many groups for HIV-positive people,” he complained, “so I kind of classified myself in the ARC-AIDS situation. I said, whatever they’re doing, I want to do, except for AZT.” That meant holistic medicine and alternative natural therapies, including Chinese herbal therapy and acupuncture.

In February, he was diagnosed as having ARC. Still, he says, “the key to this whole thing is keeping a positive mental attitude. It has changed my life 180 degrees for the better. And I am much more spiritually oriented now. . . . So far, my T-cell count has gotten a lot better.”

J. D. said his girlfriend has tested negative. He concludes that people are better off knowing their status, even if there are no proven therapies for those who test positive.

“A lot of people say, Don’t get a test. I think that’s stupid,” he said. “You should get one, the sooner, the better, so you can do something. If you wait, it can be too late.”

Joshua (a pseudonym), a 25-year-old gay college student who took the AIDS antibody test in 1985, isn’t so sure. “Two years ago, there was nothing for people who tested positive,” he said. “I felt like I was out there on my own. I had to do my own research on what to do.”

He read as much as he could about macrobiotics, vitamins and positive thinking, and he drastically changed his diet for the better. Joshua, a former professional dancer who lives in the San Fernando Valley, also took up yoga and began meditating.

“If I had it (the test) to do over again, I wouldn’t do it,” he admitted. “You get a mind-set about it. And that’s not good for you. Unless you’re strong enough to handle it, don’t take the test. I think about being positive every day and that’s what I am trying to get away from, the negativity.”

For David, a 35-year-old Los Angeles schoolteacher who was tested positive in January, more than his own anxiety is at stake. He has changed his diet, gone to a therapist and quit smoking, but he’s still trying to decide if he should tell his parents, who already know he is gay.

“I don’t want to unnecessarily frighten them,” he said. “I know they will love and support me. But right now I am healthy and I still have this sense of invincibility. . . . If you believe in your health and your ability to remain healthy and spiritual, that can only help.”

Mrs. G. is a widow at age 29. Her husband died of AIDS this fall, leaving her with a 2-year-old child and no job. She went home to live with her family. In July, 1986, after her husband was diagnosed with AIDS, she tested positive. So far, her baby has tested negative.

“At first I was very angry,” she said, sitting in the living room of her family’s home in Los Angeles. “Suddenly, after we’re married, he is positive. I said how can this be possible? He finally admitted he had had a sexual encounter with a former male roommate.”

Mrs. G. and her husband had their testing done at the Edelman Center, which is part of the Gay and Lesbian Community Services Center, and received counseling there. “The gays are really very nice, and they have a lot of good information,” she said. “But I can’t relate to them. I am not gay.”

Support Groups Offered

Even if she were gay, she might not have found the counseling to be adequate. The Edelman Center, which offers support groups for HIV-positive people, has only three counselors to talk with people before they take the test and after they receive the results two weeks later. The center tests about 50 people a day, so the maximum session per individual is only 20 minutes to half an hour.

“Very often that half an hour is not enough,” said Hugh Rice, the center’s director. “If the individual is in crisis, we have counselors who take extra time. If he needs more help . . . we recommend a private therapist.”

Mrs. G., a devout Mormon, said her faith helped her forgive her husband and begin to deal with her medical condition. But she also has turned to a private therapist, whom she credits for helping her develop a positive outlook; is trying natural alternative therapies and plans to start taking AL 721; and has begun eating more nutritional foods and listening to stress-reduction tapes.

But she still fears that if people find out she is HIV positive, she won’t be able to get another job (she left her job as a secretary in 1986 to care for her husband) and when her baby is of school age, authorities will keep the child from going to class.

“A lot of people take their life for granted because they think they’ll live forever,” she said. “With this, you appreciate every day you have, because you don’t know how many you’ll have left.”