Journal of Substance Abuse Treatment, Vol. 4, pp. 141-142, 1987 Printed in tile USA. All rights rese, ved.

THE A I D S E P I D E M I C

Some Thoughts About AIDS

BERTRAM SCHAFFNER, MD

William A. White Institute of Psychoanalysis; and Committee on Gay and Lesbian Issues, New York County District of the American Psychiatric Association

THE AREA I AM particularly interested in is the subjec- tive personal and emotional reactions of people who work with patients with AIDS. ] became interested when-I ha0 a patient with AIDS referred to me early in 1982, when AIDS was still known as GRID, and I was obliged to work out my own personal reactions to dealing with that patient. First, I went through the stage of disbelief that such a disease really existed and that it could be so devastating and fatal. I had hoped it was only a bad dream that would soon go away. Then a patient from Payne Whitney Hospital , hospi- talized as a hypomanic and then recovered, was now referred to me for help in dealing with the rest of his life. I treated him for only six weeks as he was already too ill physically. He was a window designer who had lost so much of his vision that he was nearly run over coming to my office. He had been unable to see well enough to press the right elevator buttons, and had to ask other people on the elevator to press the buttons for him. I was alarmed for him, but I also discovered that I was becoming alarmed for myself. I had con- quered fears of having him in my office, but I began to worry about what other people would say about an AIDS patient coming into the building, if they knew that I had such a patient. I knew one physician in New York, an immunologist , had been threatened with loss of his office because he was seeing AIDS patients. I thought this could also happen to me. Then one of my other patients saw this patient and recog- nized him as possibly having AIDS. He began to ask me if I was taking care of myself and what dangers he might be undergoing. So I had been plunged right into the middle of this. I began to see how tremendously fearful I became myself and I had to learn how to deal

Presented at the Fifth Clinical Practice Issues in the Treatment of Drug Abuse and Addiction Conference, April 21, 1986 at North Shore University Hospital, Manhasset, New York.

Requests for reprints should be sent to Bertram Schaffner, MD, 220 Central Park South, New York, N Y 10019.

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with it. I realized that the fears were escalating. Every- thing that happened stimulated new fears. I could understand my patients ' fears about contagion due to my own earlier fear o f exposure. I began to sense the amount of tragedy that l, as a doctor, had to cope with. It is one thing to deal with the death of somebody older. We are not used to dealing with deaths of younger people, unless we are in a war-time situation, seeing them die in battle. Having served five years in World War II, I was somewhat prepared, but even so it was not until I did some reading of Eliza- beth Kiibler-Ross that I began to be more acquainted with the normal reactions to death and dying. There is a cumulative effect of watching people die and knowing that you are not going to be able to prevent it (at least, not yet) and therefore you have to help people prepare for their deaths and you also have to prepare yourself.

For some doctors there is a tendency to become too personally involved in the lives of their A I D S patients. Some of the patients we see are very dynamic and appealing people, and it is very easy to care about their problems and worry about their welfare. One has to prepare oneself for the loss that they are going to suffer, and also for one's own loss. It is a tremendous strain being a physician, nurse, or social worker. All medical personnel need a tremendous amount of emo- tional support themselves when they deal with patients for such long periods and become fatigued or suffer emotional "burnout ." The needs of AIDS patients are so much greater than those of the average patient. It is a feeling of wanting to give to them, yet one has to be careful, one has to set limits, and sometimes that can be very difficult. It is often hard to put up with the irrational anger that is frequently shown by AIDS patients.

One of the biggest problems for medical personnel is coming to terms with their perceptions of AIDS patients as human beings and what they feel about gay men or the drug user, as well as the "innocent" AIDS

142 B. Schaffner

patient such as the hemophiliac. The main problem for the patient is feeling isolated, unwanted, despised, unaccepted by one's own doctor. A large part of a doctor's energy may go into treating AIDS patients by helping them to maintain their self-esteem and self- respect, and the feeling that they will not be deserted and that there are people in the world who will help them. I find this one of the most important challenges as well as obligations for medical personnel who deal with AIDS patients. It is particularly important in getting the AIDS patient to be cooperative and re- sponsible. Then they are more likely to safeguard themselves and other people. Medical personnel also have to come to terms with the very frustrating social problems of the AIDS patient. At other times, the mothers, wives, and children of the AIDS patient have profound problems. Then there are conflicts with em- ployers, landlords, hospital staff, insurance policies, and so on.

Many of the rules we learned as medical students and residents have to be rethought. I have learned to judiciously mix friendship and objectivity in deali;ag with AIDS patients. I have learned some new rules about showing one's own feelings. Showing my own feelings to a patient can be very constructive; it may help the person to feel that he is still a worthwhile member of society. Medical personnel often have to learn degrees of patience that they never knew before

in dealing with the group of patients known as "the worried w e l l " . . , the ones who insist that they must be sick even though there is no objective evidence that they are. To cope with them, one must familiarize oneself with obsessive compulsive neuroses.

I would like to make one more point that perhaps derives from having lived a long life. At seventy-three I have lived through a number of illnesses that used to be incurable, unbearable and even unmentionable, and that people were irrationally afraid of. It's note- worthy that we are no longer irrationally afraid of them. For example, tuberculosis. Sixty years ago peo- ple became hysterical over anyone spitting in the street. As 1 was growing up there was a disgrace and stigma connected with cancer. Then there was the polio ep- idemic; in that time people feared walking by the homes of someone with polio for fear of breathing the nearby air. Before the age of penicillin, venereal dis- ease could not even be mentioned. Once treatments were found, the fears and hysterias went away. Before the treatment was available, people were frightened to death, just as they are now of AIDS. It gives me the feeling that when AIDS has also been cured and con- quered, our present-day hysterias and irrationalities will disappear. It is hard to be patient until then, but in my lifetime I have watched the struggle with several dreaded illnesses, for over half a century, and 1 have faith that this one will also be overcome.