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Life on the Edge: Cherishing the Lessons, Holding on to the Hope


Bob Barret, PhD

One of the attractions to practicing HIV-related psychotherapy has been the sense of being on a cutting edge of our profession. For the past 15 years many of us have found ourselves facing new and unexpected challenges in this work. First was the reality of a level of suffering few had encountered before. And then there was the on-slaught of death. So many died so quickly and frustration grew over the absence of knowledge and of treatment options. Then, traditional and nontraditional approaches generated so many decisions about treatment. And, as people began to live longer, we were faced with what was a debilitating and often dehumanizing slow decline towards death. Issues like assisted suicide or other ethical concerns began to come to the forefront. And now, new medical breakthroughs have led us into a landscape we had often dreamed about, and once again approaches to psychotherapy have to change.

The success of protease inhibitors has created a major change in the issues that my patients discuss. Largely gone are the concerns about going on disability, or selling property, or preparing for a potential death, or even much discussion about suicide. The most frequently discussed issues are definitely oriented towards life. A client who had sold his business and distributed most of his estate to relatives is absorbed in seeking ways to reclaim the capital that might enable him to start another business. Another has initiated a serious conversation with his lover, suddenly aware that the relationship he might tolerate as long as he was sick is simply unacceptable now that he is feeling better. One 30-year-old who had come home to die but never got sick, was astounded with a sudden realization while driving his delivery truck. "I'm not going to die. I am going to live. Suddenly I have a chance to have a life, something that I thought was over for me."

We are in a new phase of the HIV epidemic. Rather than providing treatment that focuses on life against the backdrop of possible death, today's HIV-wise psychologists are challenged to assist their patients plan lives that incorporate long-term medical treatment free from the specter of physical decline. As the reality of renewed health and longer life seems more attainable, clients begin to make plans entirely unheard of even 18 months ago. Some return to work. Others seek new careers. Some leave relationships that worked as long as life seemed short. Many assert themselves in very positive ways, determined to make good use of this new-found time. The underlying mood of psychotherapy with these patients is one of cautious optimism. Like them, I find myself holding my breath, hoping that the medical effects are enduring, dreading the possibility that this blush of color in once-pallid skin might fade, leaving us in an even darker place than before.

Unfortunately there are others for whom the advent of hope means facing difficult situations. Some have charged enormous amounts on credit cards believing they would not live long enough to face the bill collector. Others have given up homes they loved or jobs that are no longer available and must struggle with the reality of the personal and economic setback HIV has created in their futures. Many have depleted their entire financial resources as they have financed their illness. Now almost broke, they face a future still clouded with uncertainty. And others, tentatively begin to explore a world of new relationships, aware that by some miracle they have survived virtually their entire social and emotional support system. Some are bitter about the years that have been taken away and continue to see themselves as victims.

There have been moments when I have been totally amazed by what is happening. I find myself with tears in my eyes as I see the joy and hope and determination of these clients as they create new lives. Strengthened by the challenge of facing illness and death, they march forward into their new lives with a confidence that humbles me. Reflecting on this aspect of the new terrain of HIV treatment, I see that if these treatments hold up or even become more refined, HIV-related psychotherapy will become a very different event.

Two clients illustrate quite well what might lie ahead. Tim, 37, came in last month newly diagnosed as a result of a routine health examination. Involved in a stressful career and in a relationship that had been deteriorating, he presented with a kind of confidence that had not been evident in previously seen new patients. While he was clearly concerned, he had made immediate contact with a skilled HIV physician and was promptly put on the new medical cocktail. He had discussed the situation with Joe, the lover who had recently moved out and insisted that Joe be tested immediately. And he refused Joe's offer to reestablish the relationship because, "I don't want Joe back just because he is worried about me. I only want him back because he loves me and wants a long-term relationship with me." Tim is not consumed with the kind of fears that have been typical among the newly diagnosed. His biggest worry is how to work through his anger reaction to stress so his body is as relaxed as possible.

Bill had been sick with HIV for seven years. Two years ago he went on disability and began what looked like a slow decline towards death. He and his lover had recently broken up, and Bill turned to alcohol and other drugs to express his anger. Living alone for the first time in years, he suffered from a lack of energy and struggled with having to give up control of a life that he had prized. Last summer he began the new treatments and came back in for help in stabilizing his life. Within a few weeks he was active in AA, had dated for the first time in ten years, and even started talking with his former lover about recreating their relationship. As he began to appreciate his new life, he was no longer willing to simply move back to the life he had before. Today the negotiation continues, and Bill is beginning to see that he might be able to return to work. As he put it, "My life has been enriched by HIV. I am a different person and I am determined to live more true to who I am now."

As happy and encouraging as this change of outlook may be, it presents very unique challenges to both the client and the psychologist. First and foremost, this new hope seems so fragile at times. "Suppose the medicines fail? Suppose I launch a new career only to have to abandon it? Suppose I get sick again and my former lover does not want me back?" Questions like these underlie many psychotherapy sessions. Mirroring the clients' hesitancy, I wonder, "Should I not be so encouraging? Maybe I'd best take a cautious approach to all of these new options? How do I keep my own hope in check so I am not also crushed if ultimately the new medicines fail?"

There is also a new and difficult downside to all of this. What will happen to those who can't secure these new treatments? Or, how do I sit with someone for whom they are too late or just ineffective? How do I empathize with those who have given up so much and are now caught in an understandable but destructive bitterness over what seems like another, and possibly more cruel unfairness? There are more and more gay men who admit that they are not being as careful about condom use now that HIV does not seem to be as life-threatening as before. How do I encourage caution and continued adherence to safe sex practice in these moments of celebration?

There is still another layer of response that I am seeing. HIV case managers are watching their case loads drop, and even some of the other HIV-related agencies are reporting a decline in the numbers of newly diagnosed clients who are seeking services. An agency that provides assistance by creating care teams from church communities is likewise expressing concern about the future. It just might be that many individuals and groups that have existed as a response to HIV are going to have to redefine themselves, and some of them may even disappear. Change creates many happy events but also can cause dislocation for those whose jobs will no longer be necessary.

In the midst of this new landscape some things do seem clear. First is that models of HIV-related psychotherapy need to be re-examined. Much of the material that has been used over the past few years is suddenly out of date and the assumptions underlying "traditional" HIV-related approaches no longer apply. Further, both clients and practitioners need to find ways to embrace the hope for new and longer life opportunities while simultaneously recognizing that HIV remains a serious challenge, one that can prove to be fatal. Further, it is even more important that psychologists routinely initiate discussions with all clients about safe sex practices. Encouraging clients to maintain or initiate condom use is even more important now.

As time passes we will gain more confidence about what the true HIV landscape has become. It is certain that there are still more changes ahead. There will be more medical developments, and the possibility that HIV will evolve into chronic but routine treatment like diabetes seems even more likely. Some of the creative energy that has characterized this work will undoubtedly fail, and many of us who have had our professional lives dominated by HIV will move on to other areas of practice. Happily, complex ethical and professional decisions like assisted-suicide may be in the past. I can let them go with much relief.

Whatever happens, working with HIV disease has been a life-changing event for me. My appreciation for my own life, my awareness of the capacity for unselfish love, and even my knowledge about the realities of the political process have been honed over the past 15 years. The skills I have developed and the connection I have felt with clients and colleagues has changed me enormously. And the existential grounding that has occurred has enabled me to function more successfully in all aspects of my personal and professional life. I was attracted to HIV-related psychotherapy because it was on the cutting edge, and I will stay on that edge as long as I am needed. Then, I will happily move into the difficult challenge of finding another edge in my development. For now, though, pausing here and cherishing the lessons I have learned from those who have died, holding this growing hope close, and once again trying to find the most effective way to help those who are faced with new opportunities is sufficient.




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