Oct

31

Eight Years of Working With People With HIV: The Impact Upon a Therapist

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Tony was a 33 year old attorney whose response to the sudden and unexpected breakup of his seven-year relationship was to call in sick to work and spend a week drinking, using drugs, and having anonymous sex several times daily. One morning, frightened that he was placing his job in jeopardy and feeling that his entire life was falling apart, he called me to discuss beginning therapy.

During our first session, Tony complained of feeling depressed, hurt, and afraid. Initially, treatment involved listening to Tony’s feelings and establishing a relationship with him that helped ameliorate a small part of the loneliness he’d been experiencing since the breakup. He berated himself for having been so trusting of and dependent upon Angelo. Over the course of several months, as he began to recognize that he was angry as well as sad, Tony became very confused. He had to deal with a feeling– anger–that hadn’t been permitted in his family.

Tony was the only child of first generation, Italian-American parents whose other children were all stillborn. As a result of his parents’ disappointment at not having more children, Tony assumed an importance in their lives that he described as “stifling. Though he had recognized that he was gay in high school, Tony never had sex, other than masturbating, until he graduated from college.

Because of his Catholic upbringing, his feelings for other men caused him shame and guilt. He kept hoping that if he never acted on his feelings, they would eventually go away. He knew that if his parents found out he was gay, they would be very upset. For most of his life, Tony believed that being gay meant he would always be lonely and unable to have a significant relationship or lead a happy and meaningful life.

Tony moved to New York City to attend law school and began to meet fellow students who were openly lesbian and gay and who introduced him to New York’s gay community. Tony described that period as the first happy time in his life and the first time he stopped viewing his homosexuality as a handicap. His feelings of loneliness decreased as he began to make friends, “homo-socialize,” and have sex with other men. He was so happy just dating and having sex that he had no interest in falling in love.

Tony met Angelo in his last year of law school. Angelo pursued and courted him and was the first man Tony was ever interested in dating for more than sex. Nonetheless, there were difficulties in developing the relationship because Tony, though he really liked Angelo, also wanted to continue going out with other men. He explained that once he began having sex at age 24, he felt hungry to make up for what he had deprived himself of for so many years.

Tony and Angelo never lived together. When I explored this with Tony, he at first explained that since neither he nor Angelo had ever told their parents that they were gay it seemed easier that way. But in continued sessions, Tony finally admitted that his need to have sex with other men was the primary reason he did not feel ready to even discuss living together with Angelo.

Despite the fact that they did not live together, after a year of dating they defined themselves as lovers, spoke daily, and spent several evenings a week and most weekends together. The relationship was explicitly not sexually exclusive. Tony said that this suited him perfectly because, although he loved Angelo and valued their commitment to each other, they both still wanted the option of having sex with other men. Tony would regularly have such outside encounters, yet he prevented any of them from developing into an affair. He would simply stop seeing anyone he felt would be a threat to his relationship with Angelo. Until the time that Angelo broke up with him, Tony assumed that Angelo was conducting himself in the same manner.

One day, to Tony’s astonishment, Angelo announced that he had been having an affair with another man and was in love with him. He wanted to end his relationship with Tony so that he and this other man could seriously pursue their relationship. Tony was shocked, felt betrayed, and became very depressed.

Early in treatment he had no awareness that Angelo might have felt dissatisfied with their relationship. Tony never wanted a monogamous relationship. As this was explored, it became clear that Angelo saw the openness of their relationship as a barrier to their becoming more committed to each other.

By the time he and Angelo began to go out, Tony knew about and practiced safe sex, but he had spent the previous two and a half years having unsafe sex. Tony was diagnosed with Kaposi’s sarcoma two years after beginning therapy. His diagnosis was a complete surprise to him because he had been feeling terrific, doing good workouts at the gym, and had no symptoms of any kind of immune deficiency until he discovered a lesion on his foot. His initial reaction to the diagnosis was a combination of denial “l was usually the top man during intercourse,” and highly intellectualized problem-solving that was very functional and adaptive.

Within a month of receiving the diagnosis, anger became one of Tony’s major coping strategies, and he immersed himself in political activity through involvement in the direct action group AIDS Coalition to Unleash Power (ACT-UP). His activities with ACT-UP fulfilled a variety of needs. Tony knew that participating in ACT-UP meetings, committees, and demonstrations were powerful ways for him not to feel overwhelmed, helpless or powerless about having AIDS. “I’m not just passively sitting around,” he would say, “doing nothing to help myself or other people with AIDS.” At meetings, Tony met men he could socialize with or date who were not put off by his having AIDS.

AIDS activism provided Tony with a creative and healthy outlet for his anger. He dove into researching AIDS treatments and devoured everything he could read about his condition. He soon became so knowledgeable that he was corresponding with some of the world’s leading medical researchers and treatment experts as a member of ACT-UP’s treatment and data committee. I viewed his responses as very appropriate since they enabled him to mobilize himself into self-empowering action and prevented him from becoming socially withdrawn or depressed.

Over the course of three years, Tony lost over 40 pounds and became disfigured due to edema and lesions. He was not openly gay at his law firm and told people there that he had a form of cancer. This was the same story he told his parents. As his identity as a person with AIDS and an AIDS activist grew, Tony would spend a lot of time in therapy discussing the inconsistencies of publicly hiding both his sexual orientation and his diagnosis. When his lesions spread to his face and arms, he used makeup to hide them, and he rarely discussed dying or feelings about his worsening condition. Since he was following the advice of his physician regarding treatments, I did not see any denial this may have represented as maladaptive, so I rarely confronted it.

One day Tony did not show up for his regular lunchtime appointment. When I called him at his office to ask why he had missed the session, he sounded confused. He said that he was certain that our appointment was the next day. I assured him that today was Tuesday, the same day we had been having our sessions for the past two years. This caused him to become afraid. He admitted that he had recently noticed other indications of memory loss and a growing disorientation.

We rescheduled the session for the following day, and I got Tony’s permission to telephone him a couple of hours before the session to remind him about it. During the session, I asked him his feelings about my having to call. He expressed anger about having AIDS and the growing realization that he was losing control of his body and mind. Eventually he burst into tears, pounded the couch he was sitting on and told me, “I know that for the past 30 years I’ve known the name for this thing I’m sitting on, yet for the life of me I can’t remember what it is called. I can’t really continue to practice law since I’m not even aware that I’m missing important details in contracts I read.”

After consulting with his primary care physician about the memory loss, Tony was referred for a neurological evaluation that showed he had HIV encephalitis. For three sessions after he learned the result of that examination, we discussed his stopping work and going on disability. The following month Tony stopped working and began to collect disability income.

The week after stopping work, Tony was hospitalized for intense diarrhea and dehydration. We attempted to continue doing weekly therapy over the phone, but instead, Tony requested that I come to the hospital. He was losing his hearing due to a combination of opportunistic infections and the drugs being used to treat them and could not hear well enough to make good use of telephone sessions. I continued to make hospital visits for five weeks.

During the fifth hospital visit, Tony confided that he was ready to “give up” and wished he had the means of killing himself. He said this literally as the session ended. I was annoyed with him and glibly replied, “I can understand why you would feel that way,” and left after telling him I’d see him the following week.

Immediately after I left the hospital, I had a regularly scheduled appointment with my supervisor during which I reported on my session with Tony. My supervisor asked why I had not inquired into Tony’s feelings of depression and then asked me how I felt about working with Tony.

Initially, I resisted telling my supervisor my feelings about Tony. My work with him had been challenging and frequently difficult, even before he became ill, as his intellectualized ways of responding to situations were similar to my own. I was angry and sad that he had AIDS because I really liked and cared about him a great deal. After his diagnosis, I often felt relieved when he did not want to discuss his deterioration or dying because this provided me with a much desired reprieve from facing my own feelings about his illness and ultimate death. As his illness progressed, my anger at him increased.

I was embarrassed by some of my feelings about Tony. Each week that I had a hospital visit with him, traveling made it the time equivalent of a double therapy session. Since Tony’s only income was disability, he was no longer able to afford my full fee and I agreed to accept the 5O% his insurance company reimbursed me. At first, I tried to ignore my resentment at being so poorly paid for this emotionally draining and time consuming work. Eventually, I realized that it was easier for me to focus my resentment on the fee than on my feelings about Tony’s deterioration and the fact that he was going to die.

When I left the hospital, I was unaware that I had given Tony permission to kill himself, but during supervision this became clear, as did my guilt over what I had done. Feeling clearer about my feelings, I returned to Tony to correct my earlier mistake.

When I entered Tony’s room he looked understandably surprised. “I’ve been thinking a lot about what you said to me while I was here earlier and realize that I never asked why you were having those feelings. I would like to hear what’s going on that’s made you feel this way.” With a mischievous smile Tony replied, “I did think it was pretty strange that this was the one time in our work together that you didn’t ask why I was feeling that way.”

He explained that he had been told he was going to be discharged from the hospital soon, that he was no longer in need of acute medical care even though his diarrhea was uncontrollable. He was worried because he lived in a fourth floor walk-up apartment with an unsupportive roommate who had never even visited him in the hospital. It was a long apartment with his bedroom at one end and the bathroom at the other. He was afraid he would not be able to get up the stairs or even get to the toilet. He was regularly incontinent, even in the hospital, and dreaded the indignity of soiling himself at home or in public.

Tony did not kill himself. He died a few days after our conversation and before being discharged from the hospital. But his case made a lasting impression on me that has taught me several things about what happens when I stop paying attention to how I am feeling about treating a person with AIDS.

Tony had been a strikingly beautiful man when he first entered treatment. By the end of his illness, he had lost 40 pounds and his face and neck lesions had fused into what looked like leather armor. I had secretly wished that Tony would die so that I would be spared the ordeal of having to continue to work with him, look at him, and feel powerless to change the outcome of his illness. I was exhausted by the work with Tony as I had not been keeping on top of exactly what all of these feelings were. It was painful to look at Tony because his disfigurement caused him enormous physical pain as well as emotional suffering.

When Tony talked to me about suicide, I was unconsciously relieved and hoped that he might die soon. Regrettably, by saying that I could understand his feeling the way he did, I implicitly suggested that he kill himself, thereby ending our work together and relieving me of facing my conflicting feclings. At that point in Tony’s treatment, I was feeling particularly overwhelmed by AIDS. My best friend Luis, who was also my business partner, was being treated for pneumocystis pneumonia (PCP) in the same hospital as Tony. Thus, every time I went to the hospital to visit Luis, I was reminded of Tony, and, conversely, every time I had a hospital session with Tony, I’d think of Luis. I was emotionally and physically drained by the stress caused by Luis’s illness. In addition, Touy was not the only person with AIDS I was working with at that time.

PERSONAL RAMIFICATIONS

I have been in private practice in Manhattan, almost exclusively with gay men, since 197S, and I began to treat people with AIDS in late 1982. Since that time, I have often felt like a soldier on the front lines of a war in terms of how AIDS has shaped my life. Four years ago, I tested positive for the HIV-antibody. Thus, I have no personal respite from AIDS and certainly very little professionally in a psychotherapy practice filled with men who are sero-positive, who have AIDS, or who are mourning friends or lovers who have died.

The countertransference issues of doing this work and living with the knowledge thatI, too, could one day become sick, are pervasive. Each time I work with a patient who has progressive HIV illness, there is a moment when I think to myself, “Will this be me someday?” A major task in working with HIV-infected patients is to use my feelings about being infected with HIV as a means of empathizing with them, but at the same time, I cannot allow myself to drift off during their sessions into thoughts about my own condition. One way I accomplish this is by continuously exercising my observing ego to distance myself from the difficult feelings without distancing myself from the patient who is discussing and eliciting those feclings.

CONFRONTING MORTALITY

It has taken me several years of working with people with AIDS to realize that simply spending time with a person who is dying can be emotionally draining and exhausting. There are several reasons. The first is that it is painful to be near someone you have grown to care about who is critically ill and has no chance for recovery. The second is that working with terminally ill people forces the therapist to directly confront his or her own mortality. Obviously I have known for some time that I am not immortal, but prior to doing AIDS work I never had to face this reality several times daily. Since I am infected with HIV, this is an especially poignant and, at times, difficult realization. Being close in age to Tony, I often identified with him. His condition would trigger fears and concerns about my own health. All of these issues contributed to my being angry with Tony. Until I had told him to go ahead and kill himself, I wasn’t even aware how any of these feelings were influencing my work.

The analogy between working as a psychotherapist during the current AIDS health crisis and living in a war zone will become clear when I describe what happened when Luis, my business partner, was first hospitalized with PCP. After he was admitted to the hospital, I called his patients and canceled their appointments, telling them that Luis was ill. The next week I called them again to tell them that he would not be working for the rest of the month and asked them if they wished to make an appointment with me to discuss their feelings about this. About ten of his patients chose to schedule sessions.

During each of these sessions, I encouraged Luis’s patients to discuss how they were feeling about Luis’s being unable to work with them. It seemed remarkable to me that, though I had told them he had been hospitalized, not one of his patients asked whether or not he had AIDS. They each expressed anger at his not being there, fear that perhaps he was seriously ill and would not be able to return to work, and uncertainty about how this would affect their treatment. Some, but not all, discussed fears for his well-being. For some men, Luis’s illness precipitated renewed fears about their own health and mortality. For each of them there was a lot of sadness about Luis’s not being well and available.

These sessions were the most difficult of my entire career, because I was also experiencing every feeling I was encouraging these men to express. I have never felt, before or since, such a total lack of therapeutic distance between what clients were discussing and what I was feeling. During each session, Luis’s patients were articulating all of my own feelings. I felt that there was no opportunity for me to form scabs over my fresh emotional wounds, because Luis’s patients needed to express the very feelings that shaped my pain.

In my own therapy, I was discussing all the emotions that Luis’s patients were expressing. I was worried about whether or not he was going to survive. I was pained to see him so critically ill and frightened. I was angry that such a vibrant, creative, and young man’s life was going to be shortened. I was sad that our friendship was going to be so brief.

The last thing I wanted to do was to listen to other people telling me their feelings about Luis without being able to share my own pain with them. I felt an obligation to Luis to make sure that his patients were well taken care of during his illness. I knew that if the situation had been reversed he would have seen my patients. Yet, I often left these sessions feeling angry. It was my job to take care of these people, but I was feeling personally depleted. It took nearly all of my energy just to take care of myself and be there for Luis and his lover, let alone see 30 patients a week. The only way I was able to get through that period- and give good treatment-was by going to three therapy sessions a week in addition to my group supervision.

One year before I began working with Tony, my own brother died from Kaposi’s Sarcoma. Before becoming ill, he lived in San Francisco. After having ARC for many months, he decided to return to New York where all of our family is. He moved into my apartment and for the next 14 months I was his primary care partner. Henry and I looked very much alike, thus I often felt like I was watching myself die as I watched him waste away. At times, Tony reminded me of Henry insofar as they both fought their illness with an incredible amount of bravery and dignity. Sometimes, looking at Tony, I would see Henry. This created an additional level of countertransference that had to be monitored and worked through.

IMPACT OF AIDS ON MY PRACTICE

In the past seven years of practice I have been therapist to 60 people with AIDS. As of this writing, only five are still alive. Prior to the AIDS health crisis, I had never had a patient die. Many patients with AIDS will suddenly discontinue treatment due to being hospitalized in an emergency that results in their dying. Several times I have gotten a call from a lover or friend of one of my patients informing me that my patient is in the ICU or on a respirator, or has died. Each patient’s death takes a toll on me. It is especially difficult when we have not had the opportunity wrap things up, terminate, and have a clear “good-bye.

HIV illness looms over approximately half of my current practice. In addition to patients who have full-blown AIDS, some are HIV positive and worried, though still in good health, others are contemplating whether or not they should be tested, many have a friend or friends who are ill or sero-positive, and still more are mourning the death of a lover, sibling, or child who has died from the disease. Thus every day I repeatedly confront the realities of AIDS.

As a result of working intensively with people with AIDS, my practice has changed. I now routinely do telephone sessions with clients who are hospitalized with AIDS-related conditions or who have moved back to their parents’ homes in other cities. Hospital and home visits have become a regular part of the work. Listening to men who are my own age or even younger discuss their worsening physical and mental conditions leaves me with a powerful sadness. I feel helplessness, hopelessness, and an inability to improve their situations in any way except by listening intently and caring about them.

Another way that AIDS has affected me professionally is that there is now much less financial security and stability in my practice than there was prior to the health crisis. I consider it unethical and unprofessional to terminate a patient’s treatment before it is completed just because he can no longer afford my fee. Thus I often work for reduced wages. My income is also negatively affected when people get ill or are hospitalized and must miss sessions or are too sick to continue any treatment at all. The economic insecurity involved in this work creates a very potent form of anxiety for a therapist faced with maintaining an overhead. The only way I can contain this anxiety is to work several hours more than I would wish to each week, in order to build a financial cushion for those times when patients unexpectedly leave treatment due to their illness, or are no longer able to afford to pay for therapy that they wish to continue.

LESSONS LEARNED

What have I learned after eight years of working with patients whose lives have been disrupted by AIDS? The most important thing is not to forget that I am a person with feelings, too. I have learned it is not in the best interests of either myself or my patients to deny that I am profoundly affected by the AIDS crisis. I have also learned ways to prevent emotional burnout. The first is by constantly monitoring my feelings about what’s going on in my life and how it affects my work. For me, this means participating in individual psychotherapy, group supervision, and a support group with other health-care professionals who do AIDS work. Prior to each session, I spend a few minutes reflecting and asking myself, “What about this session is likely to be particularly difficult or painful?” Then I am somewhat prepared for what might be discussed during the session. The second way is by nurturing myself. I make a special effort to spend quiet time alone, get together with friends, do things I enjoy, and take plenty of vacations away from the practice.

BECOMING LESS ANESTHETIZED

I’ve learned how to recognize when I’m feeling particularly stressed, vulnerable, sad, angry, or just overwhelmed. At times, I have a tendency to completely shut down feelings of sadness and loss about someone who has died.

It frightens me when I realize how numb I can become. I’m afraid, because shutting down my feelings hinders my ability to empathize with my patients, and my work suffers. Obviously, I cannot shut off only feelings of sadness and loss. I begin to shut down other feelings too and as a result, feel very removed from people and life in general. Much of my own therapy has been about becoming less anesthetized. I find myself in personal and professional situations where it would be much easier not to have any feelings, yet to acknowledge my feelings is absolutely necessary. Staying aware of this conflict is a constant effort.

THE DEATH TOLL

I often feel as if I were in a state of “bereavement overload” since so many friends, clients, and acquaintances are now dead from AIDS. In a conversation I had with my mother, prior to her death at age 75, I realized that I had more peers who were dying or who had died than she did. The sheer numbers make it increasingly more difficult to mourn any one particular person and process reactions to any one death.

Sometimes it is difficult not to keep myself emotionally distant from a new patient who has AIDS. It is easy to rationalize that he is dying anyway, so why allow myself to get close to him? When I have not allowed myself to empathize with a new patient in this situation, the result has been that he feels as isolated from me within the therapeutic relationship as he has from all the people in his life who are keeping their distance In his personal relationships. If I am not able to correct my behavior quickly, the patient rightfully leaves treatment.

By focusing on how I’m thinking and feeling about a new patient, I’ve come to learn whether or not I should begin working with him. I have occasionally begun discussing a new patient during supervision by saying “A new person with AIDS has begun treatment. When my supervisor would request more clarifying data, I would repeat what I had just said instead of giving the person’s age, race, presenting problem, and preliminary dynamic formulation. If I am unable to see a person with AIDS as a unique individual with special issues and ways of relating to the world and his illness, it clearly indicates to me that I should not begin working with that person and need to refer him to a colleague.

Yet, I am always ambivalent about referring a person with AIDS. Accepting that there are limits to how many people with AIDS I can work with at a particular time shatters my illusion of being “super shrink.” I ask myself, “Am I shirking my professional responsibilities to my own community by not seeing this person?” even though I know I am not the only good therapist in Manhattan who is experienced in working with people with HIV. If the person seeking treatment is a former patient who has just been diagnosed or whose lover has just been diagnosed or died, the decision about whether or not to take this person back into treatment can be particularly difficult and full of conflict.

I sometimes question whether the strains of doing psychotherapy with people who have AIDS are any different from other psychotherapists’ stresses. As therapists, we always run the risk of having to listen to things that are painful or difficult for us, or that we are facing in our own lives.

Yet being gay, infected with HIV, surrounded by friends who are infected, sick, or dying, and working with a large number of patients with AIDS-related concerns creates an urgency during treatment that I had never encountered prior to the onset of the AIDS health crisis. As I learn to recognize and tolerate the discomfort that arises from doing psychotherapy with people with AIDS, I continue to grow as a person as well as a therapist.

I have become aware of a unique paradox that is a direct result of this work. When I am able to not close off my feelings, I feel more alive than at any other time in my life. Experiencing and learning more about the variety of my feelings has resulted in an improvement in the quality of my life and of the therapy I do with all my patients. Largely this is due to my being able to empathize with more of what my patients are discussing. My awareness of when I drift off from what my patient is saying and begin to think about my own situation is heightened. Thus, I am able to quickly refocus my attention and be completely present during sessions more often.

It is difficult to listen to people talk about illness and dying so much. It requires a lot of discipline not to become preoccupied during a session with my health status or friends who are ill or who have died. Yet I remind myself I must be doing something right since so many people are allowing me to accompany them through this final phase of their lives. It is difficult to know so many people who are sick and who have died, especially when I am also infected with the virus that is making them ill.

Yet today I am not sick. My life is rich and interesting, full of wonderful creative people. My work is important, meaningful to me, and challenging. I am forced to savor and appreciate the ever increasing quality of my own life, even as I recognize how much sadness there is in it. The duality of the richness and the sadness inherent in life creates a potent awareness that flavors all aspects of my life and work. Working in the field of AIDS continuously reminds me how fragile and brief life is. Thus at 38 years old, I no longer take it for granted that I will have enough time to do all that I want. I have consciously begun to focus more on the quality of my life instead of the length of it. I work with my patients to try and help them achieve this perspective.

I do not believe that there are any “silver linings” to AIDS. I can’t stand it when some people talk about AIDS as a gift. Yet experiencing the way that life continues and even flourishes in the midst of so much suffering has been the most bizarre and surprising outcome of living and working through all of this.

Category: AIDS/HIV Articles

Matt

About the Author ()

I’ve hurt myself while trying to help myself more than you can imagine, that’s why I want to scientifically analyze every popular self-help technique and ‘method’ there is.