Insights on Living With AIDS : * Personal health: Long-term survivors share a strong interest in their treatment, a positive attitude and supportive care-givers, a study shows.

When asked about their life’s goals, the young men, ages 25 to 44, responded much as one might expect.

“To lecture and teach. Finish graduate school. Have my play produced. Be recognized for my artwork. Stay sober. Travel to Europe. To get into a relationship.”

These men, however, had lived with AIDS for several years.

Although many assume that an AIDS diagnosis translates to impending death, one of the first studies of the psychological attributes of long-term survivors shows that some overcome their uncertain futures to achieve a quality life and to fulfill their goals.

The study raises the question of whether good coping skills can even prolong life.

That is significant, says the study’s principal author, Robert H. Remien, because medical advances are enabling more people with AIDS to live longer and in better health. But few studies have explored the quality of their lives and the psychological attributes that might prolong life.

“It’s my experience that living with AIDS is one of the most stressful experiences,” says Remien, a psychologist with Columbia University and the New York State Psychiatric Institute who presented his study at the American Psychological Assn. annual meeting this summer in San Francisco. “It’s unlike other diseases where it might go into remission. You’re just living longer.”

And living longer means more exposure to illness, difficult medical treatments, altered relationships and the AIDS deaths of loved ones.

But in Remien’s study of 53 long-term AIDS survivors--all gay men in New York City--most were extremely well-adjusted, with low rates of depression, anxiety and suicidal tendencies.

A long-term survivor is defined by the U.S. Centers for Disease Control as someone who has lived at least twice as long as the median survival period, which was 19 months for gay men in 1990. About 10% of AIDS patients are long-term survivors.

The men in Remien’s study had lived from three to nine years, with four years the average. Each had experienced a serious AIDS-related illness, which meets the definition of full-blown AIDS; 85%, for example, had Pneumocystis carinii, an opportunistic infection that commonly afflicts people with AIDS.

“We were surprised that the psychological resilience was quite high,” Remien says. “Some of the men talked about not knowing what to do with survival. They had to get over that hurdle and begin to pursue living again.”

Among the study’s major findings:

* The long-term survivors were “superb medical consumers,” highly knowledgeable about their illness and took an assertive role in treatment decisions.

* There were lows rates of mood disorders. Only three--6%--suffered clinical depression, only slightly higher than the 5% rate seen in the general population of men this age.

* An AIDS diagnosis did not lead to an increase in suicide attempts.

* Personal satisfaction with their lives was linked strongly to social support and absence of conflict and stress.

* About half of the men pursued psychological therapy after their diagnoses.

The findings were especially surprising because many were found to have the disease when there was little medical intervention, like AZT, the first effective treatment.

“Many were told they had six months to a year to live,” Remien says.

But, he says, the men developed realistic and pragmatic attitudes. They accepted their illness and focused on maintaining a positive attitude, a will to live and tenacity. They recognized the importance of good medical care and emotional support.

“These men were not into denial,” Remien says. “Most had goals in their lives; that indicates optimism for their future.”

The men coped with hardships. For example, many cited confronting their mortality and revealing their illness to family and friends as the most difficult issues. More than half said their sex lives were disappointing; only 11 of 53 were romantically involved.

But they maintained the conviction that good times lay ahead.

“Many became different people,” Remien says. “They talked about changing their lives around.”

Some recovered from alcohol or drug addictions and began taking better care of themselves. Two obtained graduate degrees after their diagnoses. About one-third kept working.

“For those who continued to work, it was very important. It gave them great satisfaction and helped them,” Remien says.

These men did not have great financial resources, but they were resourceful, Remien noted.

“These were low- to middle-class men, but all found their way to good medical care,” he said.

Remien considers it noteworthy that the majority of long-term survivors in his study eschewed alternative therapies in favor of established treatment--the “AMA way,” as one man put it, referring to American Medical Assn. recommendations. More than 90% had taken AZT; only 34% had tried non-traditional care.

“They were very careful with their doctors about what to do,” he says. “They were not reluctant to change physicians if they were dissatisfied. But that tended to happen early on (after diagnosis).”

Researchers have long speculated that mental health can contribute to longevity. Studies on how cancer patients cope, for example, have shed some light on the influence of mind and attitude on illness, says Dr. Duane McWaine, a psychiatrist with the Community Psychiatric Centers’ Westwood Hospital.

People with cancer or chronic illness “just seem to do better if they are not depressed, if they are not particularly anxious,” he says.

But, he says, achieving psychological well-being is particularly difficult for patients with AIDS or those who are HIV-positive because they are largely seen as social pariahs.

McWaine is the director of a program called Managing HIV that helps infected patients curb depression, substance abuse, suicidal thoughts and anxiety. Patients are encouraged to talk openly about their condition, he says.

“People need to take care of their entire being,” he says. “So we take their medical care as a given and go on to address psychological, spiritual and chemical dependency issues.”

Many men in Remien’s study suggested that a good attitude is the key to longevity.

“I think that your mind is a really powerful tool,” said one long-term survivor. “If you don’t dwell on the things that are bad, on the contrary, think positive and get yourself going, you’ll probably have a better chance of doing better.”

Many organizations try to meet the basic needs of AIDS patients: medical care, food and transportation. As people with AIDS live longer, a few have begun to emphasize mental health services as well.

The Visiting Nurses Assn. of Los Angeles provides home visits to AIDS patients to offer psychiatric and social services, says Dennee Frey, program director of the AIDS Psychiatric Homecare Program.

Frey says the components of good health seen in long-term survivors in her program mirror Remien’s findings:

“One of the most important things we found was having a supportive group of people, friends or family. The people who have done the best are not isolated. Also, there wasn’t a lot of conflict. The family perhaps felt comfortable with homosexuality. And where the family was accepting, that really seemed to help a great deal.”

Remien’s study found that all the long-term survivors had at least one close confidant to listen to and assist them. Frey also pointed to the need for a strong relationship with a care-giver:

“That person became somebody to live for.”

Voices of Experience

Long-term AIDS survivors were asked in a recent study what they would say to someone who is found to have the infection. Their responses:

* Maintain a positive attitude (45%).

* Educate yourself about the illness (26%).

* Get good medical care (23%).

* Don’t believe it’s a death sentence (17%).

* Engage in healthful activities, such as rest and exercise (11%).

* Join a support group (11%).

* Get emotional support (11%).

* Be realistic/accept changes (9%).

* Get professional counseling (6%).

Source: Robert H. Remien, HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University.