I am a person, also a social worker, who has been living with AIDS since 1982. Although I do not have AIDS myself, the disease and all of the personal and professional issues surrounding it have profoundly influenced my life for over a decade. In 1984 my oldest brother died as a result of AIDS followed by my best friend and partner in my practice in 1989. Six men who lived in my apartment building have died from AIDS in the past 12 years, as have numerous acquaintances, colleagues, and several close friends. Four of my closest friends are currently seriously ill with complications from AIDS. The man I love and share my life with has AIDS. When patients and therapists are dealing with virtually identical life crises simultaneously, the potential for therapeutic mistakes is enormous. Therapists must be highly skilled and self-aware in order to avert such dangers.
As a therapist with a largely gay male practice, I work with people who are living with AIDS or who are intimately affected by it every day. Before the onset of AIDS, active alcoholism, drug addiction and Hepatitis B were the only life-threatening illnesses likely to kill my patients. My first professional experience with AIDS was in 1981 when a psychotherapy client began exhibiting symptoms of what we now know is HIV illness. At that time AIDS was unknown but shortly thereafter, the syndrome was labeled “Gay Related Immune Deficiency” (GRID). It soon became clear to me that the men who were sick with this new disease had lived no differently than I had for many years. I assumed that if these people were getting sick, there was an excellent chance that the same thing could or would probably happen to me. In 1983, I began to volunteer at Gay Men’s Health Crisis (GMHC), working with people with AIDS, and supervising other volunteers. I still volunteer at GMHC. In the past 12 years, over 100 patients in my private practice have died from AIDS. My purpose in relating the above experiences is to attempt to describe how I, along with so many others, am able to survive and thrive emotionally, psychologically, and spiritually in the midst of this plague and how I continue to do this work without becoming burned-out.
Colleagues and friends often ask me how it is that I’ve been able to work in AIDS for so long, dealing with all the pain and suffering endemic to this patient population. Others ask whether it’s overwhelming to have intimately known and worked with so many people who have died or who are dying.
As an action-oriented person I have had to struggle to learn that I am indeed doing something by simply sitting with clients, caring about them, and encouraging them to share any and all of their feelings about what is happening to them. Of course, I am unable to change the outcome of their illness. Accepting this reality, more than anything else, has taught me how to tolerate discomfort.
The discomfort I experience is about many things. Often it arises from a genuine empathetic connection with clients who are honestly experiencing feelings about their loss of health, career, lover, and their own imminent death. Once I have grown to care about a person comes all the accompanying discomfort about losing that person. Sometimes there is simply the uneasiness of being close to a person who is very ill or who is dying, simply because this reminds me of the fragility of my own good health.
What follows are some case examples that illustrate the challenges inherent in attempting to provide competent treatment while living and practicing under the shadows of HIV/AIDS. The following case illustrates how the HIV status of the therapist can emerge as an important clinical issue.
Disclosing The Therapist’s HIV Status?
I injured one of my hands and had to cancel several patients’ sessions. One of my partners telephoned these patients and told them that I had an emergency and would phone them later to reschedule. One of the men I was scheduled to see was Lawrence, a 32 year-old referred to me by his AA sponsor. Lawrence’s last two therapists had both died of AIDS within two years of each other. Lawrence himself is sero-negative. In addition to wanting to work through his feelings about the deaths of his previous therapists, he wanted to explore his own fears of intimacy that were making it difficult for him to form romantic relationships with other men.
I telephoned Lawrence that evening to reschedule the session the following day. Knowing that his last two therapists had died of AIDS, I assumed he might be anxious about the cancellation. With this in mind, I felt it was important that Lawrence either speak with me in person or hear my voice on his machine rescheduling the appointment. When I saw him the next day, he began the session by telling me he thought I was in the emergency room and he had panicked thinking I too had AIDS and was going to leave him. While he said this, I was thinking that I hoped I didn’t get sick any time soon and provide him with one more reason why he shouldn’t trust other gay men.
Lawrence went on to say that the phone call from my colleague had reawakened all his feelings about the deaths of his previous therapists as well as several close friends. He told me he realized he didn’t even know what my sero-status was, and he felt that perhaps he was holding back from telling me everything out of the fear that I, too might die. He then said that his feelings at this point concerned how he would be affected if I were to become permanently disabled and then asked me how I would react if he asked me about my sero-status.
I told him how glad I was that he was able to share those feelings with me. I then explained that at the present time I wasn’t sure how I’d respond to a request from him regarding my HIV status. Before answering – – I’d want us to spend time exploring all his feelings — what it would mean if I was sero-positive, and what it would mean if I was sero-negative. I also said that before I made any decision about whether to answer this question, I would spend time thinking about where we were in his treatment. I explained that I wanted my response to be in the best interest of his therapy. I then asked him how he felt hearing this answer to his hypothetical question.
After thinking for a few moments, he told me he was very comfortable with my response – – it made him feel well taken care of. He had been afraid I wouldn’t tell him my HIV status because of concerns about confidentiality. He then said he wasn’t even sure he really wanted to know what my HIV status was anyway.
While I feel that I handled this with sensitivity, it was a difficult session for me because it raised some anxieties and questions I had not spent much time considering. Suppose Lawrence had insisted upon knowing my HIV status. Did he have a right to know this information? What if he refused to continue treatment unless I assured him I was HIV negative? This would not have been paranoia, a simple avoidance of intimacy, or resistance to treatment on his part. I viewed Lawrence’s concerns to be well founded and an appropriate attempt to be self-protective. He chose not ask what my HIV status was, and remains in treatment more than two years later.
A Classic Case of Countertransference
Ernie had been a patient of mine for five years when John, his best friend of 25 years and roommate for the past eight became acutely ill with AIDS and decided to return home to the mid west. Ernie felt very guilty that he had not tried to talk John into continuing to live in New York in their small studio apartment. I fully supported his decision about the impracticality of John’s continuing to live with him but this proved to be a mistake because I had not explored Ernie’s feelings thoroughly enough. Two weeks after John left, Ernie came to session enraged at me. Appropriately, he yelled at me for not having urged him to explore options about having John continue to live with him. Ernie was overwhelmed by guilt that he had abandoned John in his time of greatest need.
As I listened to Ernie and encouraged him to tell me all his feelings, I knew I had messed up and would need to examine this. During supervision I learned why I had behaved as I did in not attempting to explore Ernie’s ambivalence.
My failure was largely a result of my experience with my older brother Henry who was also gay. As adults we were not close and, in fact, our first conversation after a three-year silence was his announcement that he had been diagnosed with AIDS and was going to return to New York to live. My decision to allow Henry to move in with me was impulsive — I did not like him and did not relish the prospect of having him live with me I also did not want to become his primary care-partner but being an AIDS activist, I didn’t see how I could refuse to offer my destitute and homeless brother a place to live. Henry lived with me for 14 months until he died in my bed.
At the time I was working with Ernie on this issue, Henry had been dead for two years. Interestingly, it was while exploring my reactions to Ernie that my supervisor, reminded me that, years ago, I had only told her about my brother moving in the day before he was due to arrive. I had neglected to discuss this situation with her and to explore my own ambivalent feelings and possible options before offering to let Henry move in. Because this occurred years before Ernie told became my patient, I was unaware it was influencing me. In my unconscious desire to protect Ernie from the horrors I experienced as I watched my brother deteriorate, I had not been neutral in my role as Ernie’s therapist.
I have grown increasingly comfortable talking with terminally ill people about impending death, and about the corresponding losses and feelings they experience. It is remarkable to ask someone very near to dying why he still clings to life. Usually the answers I have elicited were extraordinary in their clarity and understanding of an important issue that needed finishing before each person could finally let go.
In the final week of my best friend’s life he was at home and every breath was a struggle. During that time, his lover Dennis repeatedly told Luis it was alright to die and that he loved him very much and thanked him for the wonderful years they had shared. Dennis wisely urged me and others to also tell Luis that it was alright for him to let go. This was the first time I’d ever said this kind of thing to anyone and it was excruciatingly painful. Yet, it was only after we had all given Luis permission to die that his breathing became less labored and he died peacefully the following morning.
I thought of this as I sat at the bedside of my patient Cal and listened to him say how worried he was about his lover Stan. Cal did most of the care taking in the relationship prior to becoming ill and, even though their roles were now reversed, he worried that Stan would have trouble taking care of himself.
Cal was so ill, that Stan did not understand why he was still alive. I urged him to ask Cal this question and Cal told Stan he was hanging on because he was worried that Stan wouldn’t be able to take care of himself. With a laugh Stan reminded him that he had taken good care of himself for the 30 years before they met, and had subsequently learned even better from all of the ways that Cal had nurtured him. “Every time I do one of the things for myself that you used to do for me, I’ll think about you and feel you inside of me,” he told Cal. “I’ll miss you like hell, yet your body is no longer useful to you, and hasn’t been for some time. The most loving thing you can do for me and yourself is to stop fighting and move on.” Cal died that night, in his bed, at home, surrounded by the people who loved him most.
The therapist’s experience of death and dying will shape his work with patients at risk for the same illness as he. Does the therapist believe that death is the end of it all, or does he envision some kind of life following death? If the therapist has not examined his own beliefs and feelings surrounding death, and has not faced his own fears, he will not be able to initiate discussions about this with patients. A therapist’s inability to discuss these issues creates a sense of secrecy or shame in the patient who may not have anyone else to talk to about this.
Living with AIDS has forced me to face and grapple with many of life’s most profound issues. For instance, I have learned how to question clients about some of the most personal areas of their lives. This includes asking about individuals’ personal faith experiences and how they integrate spirituality into their lives. It is surprising how many people are hungry to talk about this subject once asked. Many people living with AIDS find meaning and comfort in New Age spirituality. Not believing in either New Age teachings nor in an afterlife, I have had to contain my own skepticism and disbelief in order to encourage patients to discuss how meaningful and comforting these beliefs are. Some people do not find that spirituality or traditional religion meet their needs.
While I acknowledge how difficult it can be for any of us, patient or therapist, to face the reality of our own death, being forced to confront this on a daily basis, both in my work and personal life, has helped me demystify death and dying and move these issues from the abstract into the concrete realm.
Personal and Professional Growth
I used to confront a patient’s defenses quicker and push him more if he was symptomatic with HIV disease than I would have if I felt I had more time to work with him. When I explored this in supervision, I realized that it came from my need to feel something tangible was occurring during treatment, and not from the soundest clinical decision for the individual patient. It became clear to me that it was neither fair to my patients nor was it good therapy if I did not customize the treatment to meet each individual’s needs, defensive structures, and psychodynamics.
I find many rewards in doing this work. Each time I have helped a client explore a painful or difficult area there is no choice but to explore these same issues in my own life. Working closely with so many people who have subsequently died has helped me to be more completely present while my own friends and loved ones are gravely ill or dying. My work has provided valuable training that enables me to help those in my personal life discuss and deal with emotionally charged situations such as faith experiences, beliefs about death, feelings about dying, and practical issues such as medical proxies, living wills, and plans for burial or cremation. Similarly, by not remaining a stranger to the process of dying, I have grown more comfortable confronting my own mortality.
When I had less experience doing this work, I would find myself becoming numb, glazing over and nodding in what I hoped was an empathetic way when a client discussed something that was deeply disturbing to me. I was not proud of the way I responded but there were many times when it was the only way for me to tolerate being in the same room with someone sharing such intensely painful feelings. When I tune my patient out during his session, my own narcissistic injuries are being triggered, and I regress to a less developed way of being. I am not able to put aside my own reactions in order to be present for my patient, encouraging him to share his feelings. I would rather not listen to his feelings, since they are so similar to the ones I struggle to defend myself against.
Recently, Jeffrey became my psychotherapy client following the death of his lover of eight years. Jeffrey was actively and appropriately grieving and was also mourning the deaths of most of the men with whom he and Richard had been friends. As he began to discuss being a widower, being single, and his fears about how he would meet men once he felt ready to date again, I felt compassion and a deep connection to him. I recognized that much of this feeling was present because I empathized with him and spent hours in my own therapy discussing related issues.
After a session with Jeffrey I reflected on why I was able to hear the things he said, remain empathic, and not need to distance myself from him and those distressing feelings I also struggled with. During my lover’s recent illness we both have awakened in the early morning hours. At those times we talk about whatever is on our minds, share our nightly dreams and hold on to each other tightly. As I lay there with him, trying to take in each touch, odor and taste of him I can’t help but think about the approaching time when I will not have Lee to hold, talk to and meet the dawn with. We are growing closer, even as the end of our relationship approaches.
Sometimes I think that allowing myself to get ever closer to Lee will only increase my pain after he dies. At times I feel a strong pull to distance myself from him in a misguided attempt to protect myself. When I withdraw from him, one of us invariably notices and we discuss the situation in that moment. Clearly my increased ability to be present in my personal life has enabled me to remain more present with clients, and not distancing from my clients has helped me stay closer in touch with my friends and my lover.
Being closely involved with so many people who were ill and who have died has made me learn not to take any part of life for granted. I no longer assume that I have enough time to do everything I want to do; the preciousness and fragility of life are much more apparent now. My priorities also have shifted so that I increasingly savor my relationships with friends and loved ones on a daily basis. I no longer shy away from telling a friend, family member, or my lover that I love them or that I appreciate something specific about them.
The potential for burnout in AIDS service providers is a serious reality. My experience is that burnout happens largely when people ignore their feelings. Thus I share in this chapter what it is like for me to do this work, in the hope that other therapists doing similar work will find it helpful to read about my struggles. The challenge remains how do we sustain ourselves and each other for this reality: AIDS will likely be with us for the rest of our professional lives.
It would not have been possible for me to live through all of this, without losing whatever “serenity” I had, if I had not been in my own active psychotherapy and supervision with a remarkable woman who has been my professional mentor for the past 15 years. In addition, for five years, in the early to mid 1980s, I attended a support group for health care professionals who were working in AIDS. We met regularly and provided ourselves with a “safe space” to ascertain what each needed in order to continue to do this draining, yet exhilarating work.
It has become increasingly clear to me from supervising therapists working in AIDS, and facilitating support groups for AIDS professionals, that the only way any of us are able to continue to expend the prodigious amounts of energy demanded by this work, is when we are able to feed and nurture our many needs as individuals. When I ask the professionals I work with what they do to “feed” themselves, they often look at me as if I were crazy. I have been told on more than one occasion, “I don’t have time to do my work, have a life, and take care of my own needs as well.” This is a poignant conflict. Similarly, a large part of my work with care-partners of people with AIDS is to encourage them to take time for themselves and to give themselves much-needed breaks from their routine. I am amazed at how resistant both colleagues and clients are to the notion of building in time for play and fun in the midst of the horror.
I find that my work in AIDS, and living surrounded by AIDS, for the past 12 years has increased my appreciation for and my capacity to enjoy the richness of life. While of course tremendously saddened, instead of finding myself drained, I am increasingly nourished and inspired by working with people living with HIV and AIDS, as devastating as it is. The inspiration comes from their courage.
As a gay man living in the midst of a community ravished by AIDS, the issues I’ve discussed have an obvious immediacy and urgency to me personally as well as professionally. While the content of this discussion has been living and practicing psychotherapy in the face of a particular plague, I think that the dynamics are universally relevant to all therapists. Which of us has not had to face our own fears and losses, or grapple with our own mortality? This is the core of human pain and triumph. How we manage these issues defines our personhood. How we help our patients manage these issues defines us as therapists.
Category: AIDS/HIV Articles