The New York Times - May 30, 1983
Glenn Collins

"It just hangs over your head," said Philip Lanzaratta, a 41-year-old AIDS patient in Manhattan who has been struggling with the disease for 20 months. "There is always the overriding uncertainty that on any day you'll come down with something new that your suppressed immune system can't repel."

New knowledge about the special emotional difficulties of AIDS victims is emerging as mental-health professionals develop strategies for treating these patients who live with a mysterious, often fatal contagious disorder that has no known causes or cures.

Last week the Government's chief health official said that investigating the illness was "the No. 1 priority" of the United States Public Health Service. Half the 1,450 cases reported nationally have occurred in New York, and social workers, psychiatrists and psychologists here have been treating AIDS victims for several years.

'There Were No Guidelines'

"We felt as if we were in uncharted waters," said Dr. Stuart E. Nichols Jr., a psychiatrist at Beth Israel Medical Center who began treating AIDS patients 18 months ago. "There were no guidelines and not much in the psychiatric literature for coping with anxiety about such a mysterious disease."

Subsequently, Dr. Nichols has interviewed and studied more than 100 AIDS patients, including Mr. Lanzaratta, who attended the doctor's first support group, started in April 1982. "One of the special problems for patients is the lack of hard medical data," Dr. Nichols said. "We don't know what causes AIDS, or how long the incubation period is. Such a situation can be a fertile ground for misinformation, superstitiousness and magical thinking."

"Some of the therapeutic issues are the same as with other chronically ill patients," said Noreen Russell, a social worker at New York University Medical Center who has been working with terminally ill patients for seven years now. "But the intensity of anxiety can be greater because we're dealing with a very great unknown."

Miss Russell, along with a co-worker, Virginia Lehman, started a therapy group for AIDS victims in December 1981 and began another group last June. "What's unique," said Miss Russell, "is that, in the presence of such sophisticated medical technology, we seem to be so powerless. AIDS reminds people of cancer, yet it has the sense of contagion about it. In a sense AIDS is like herpes - but herpes doesn't kill."

One of the victims' greatest fears is that they may spread AIDS to family, friends or partners. "Patients can feel terribly isolated," said Dr. Kenneth S. Wein, clinical director of Gay Men's Health Crisis Inc., a nonprofit social-service agency that has treated more than 150 AIDS patients in support and therapy groups. "Some really do feel like lepers, even though it appears that AIDS is not transmitted by simple social contact."

AIDS is believed to be transmitted through sexual or intimate contact. Most cases have involved male homosexuals, intravenous drug users and people from Haiti. However, other patients have included hemophiliacs who have received blood products, recipients of blood transfusions, and women who had sexual contact with AIDS victims.

A focal point for AIDS treatment in the city has been the Gay Men's Health Crisis office in Manhattan, which, in addition to its support and therapy groups for AIDS patients -including Haitians and intravenous drug users - runs groups for patients' parents and partners. Among its other programs, the agency sends crisis counselors and home attendants to visit AIDS victims and runs an AIDS hotline number, 212-685-4952.

The initial shock after AIDS is first diagnosed can be considerable, said Dr. Nichols, but reactions vary greatly from patient to patient. "One of the responses to any serious health insult is 'Why me?' " said Dr. Nichols, president of the Caucus of Gay, Lesbian and Bisexual Members of the American Psychiatric Association. "In the case of gays, it often seems that no matter how well they have come to terms with their gayness, when they learn they have AIDS they experience a feeling of being punished for being gay."

"For some the experience is a sort of second 'coming out,' " said Miss Russell. "They have to come to terms with their gayness all over again."

The Rev. William Sloane Coffin, senior minister of Riverside Church in Manhattan, has counseled a number of AIDS victims. "Some felt that this was in some way God's punishment," he said. "I reassured them that they have no right in the world to feel in any way that this is God's will. Being gay is not a sin. But once they get sick, it's as if when their immune system breaks down, their psychological immune system breaks down, too."

After patients' initial shock, said Dr. Nichols, many experience considerable anger. "They become angry at God, at society, at government, at government research funding levels and at doctors. We are medical people, and we're supposed to have answers. But essentially, there aren't any answers."

"Some of them believe that society is only interested in AIDS now that straight people may be at risk," said Dr. John B. Montana, an attending physician at Cabrini Medical Center who has treated many AIDS patients and counseled them at St. Marks Clinic in Greenwich Village.

Some of the patients have used their experience to examine the role that sex plays in their lives. Dr. Nichols said, "Some patients are learning to do loving things together that are totally nonsexual, and redefining the meaning of intimacy."

One of the important tasks of therapy with AIDS victims is to get them to reconnect with their families, where possible. For some homosexuals this has been difficult. "Many are not 'out' to their families, or are in a different city by choice and find it awfully hard to ask for support," said Dr. Nichols.

One AIDS patient got up the courage and told his family he was a homosexual, Dr. Nichols said: "His mother replied, 'Thank God you told us you're gay. We thought you didn't know. We figured we had to tell you, and we just didn't know how.' "

Miss Russell said that many of her patients were quite pleasantly surprised by family members who provided generous assistance unexpectedly. However, this has not always been the reaction. 'Some Real Horror Stories'

"There have been some real horror stories," said Dr. Montana. The family of one AIDS patient who died refused to accept the body. "They didn't know their son was gay, and they wouldn't accept it."

He said that patients' friends and families often rally round, but not always: "I've seen some people die in utter loneliness. I was with one patient in the hospital when he died. He was 22, and he was everybody's best friend - people loved him. He died alone. I said to him, 'Close your eyes now and go to sleep.' And then he died."

For the living, anxiety must constantly be coped with. "Having the fear, that's the worst thing," said a 45-year-old illustrator in Manhattan who has Kaposi's sarcoma, a cancer often seen in AIDS patients, and who asked that his name not be used. "I woke up with a temperature this morning, and I'm very worried right now. It could mean that I'll have to be hospitalized again."

The emotional toll of treating AIDS patients can be a problem for professionals as well. "I've wept," said Dr. Montana. "There are times when I feel like pounding my head against the wall. It's always hard on a hospital staff losing a young patient. These patients are often young and recently healthy."

"But the work can be extraordinarily rewarding, too," said Miss Russell. "I am moved again and again by my patients' great courage in the face of life-threatening disease." Mr. Lanzaratta said, "The struggle has been difficult, but it has given me a sense of strength and a certain dignity."

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