Counseling HIV-Positive Clients

A new connotation for the word positive has entered into the popular lexicon: to live with HIV disease. Daily we hear rumors, reports, and stories that yet another person is positive, and immediately we assume we understand what that means. But do we? Do we really know what the experience of living with HIV disease is like?

Certainly, as part of what it means to be positive is to despair. Living with HIV disease often brings an end to old ways of thinking, old ways of acting, and old ways of living. Often hope is also lost. Ironically, at the same time, to be positive means to be hopeful. This paradox--to have hope destroyed while at the same time becoming increasingly reliant on it--defines the experience of being HIV positive more than anything. And it is this profound paradox that as counselors,we must come to understand.

For many people, remaining hopeful after they test positive demands great strength. Society still stigmatizes people who live with HIV disease. Life adaptations caused by the progression of the disease often strain people's self-concepts. Relationships can become drastically altered. As these things happen, long-term psychological support becomes crucial. More and more frequently, people living with HIV disease and their loved ones call upon us, whether we call ourselves counselors, therapists or psychologists, social workers or nurses, professionals or paraprofessionals, to provide such support.

What it means to be positive in the 1990s differs from what it meant in the 1980s. To work effectively with HIV-positive clients, we must understand the differences. In the early days of the AIDS pandemic, our focus was primarily on helping our HIV-positive clients overcome the shock of testing positive and preparing them for their death. By the late 1980s, we had expanded our notion of what working with HIV-infected people involved. We broadened our practice to include the concerns of women with HIV disease. We began to attend to infected children. We became more sensitive to the special issues of substance abusers. Yet in the late 1980s our own narrow and disjointed therapeutic vision often prevented us from fully understanding what it really meant to be positive.

By the end of the 1980s, we continued, for the most part, to lack an integrated approach to counseling people living with HIV disease. Many of us treated our HIV-positive clients as though they were mirrors that had fallen to the ground and shattered into a thousand pieces. Rather than try to put the mirror together again, many of us looked at one piece here and another piece there. Often we counseled people living with HIV disease as if their illness separated them from their lives. For example many of us assumed that talking with our clients about how they were handling their HIV status was sufficient; we overlooked inquiring about how living with HIV disease affected their sex life, their work, or their spiritual beliefs.

Positive: HIV-Affirmative Counseling describes the experience of counseling people in the 1990s who are living with HIV disease. The major premise of the book is simple: to counsel HIV-positive clients we must come to understand their experience and must affirm it, as it is. We must not make their experience into what we want it to be, into what we think it should be, or into what we need it to be. Instead we must handle their experience of being positive with great respect and with great compassion.

The book pushes the art of counseling people living with HIV disease into the second half of the 1990s. It defines a new counseling approach--HIV affirmative counseling--that takes into consideration the medical advances of the last decade. Today, unlike 10 years ago, testing HIV-positive no longer means the immediate end of a client's life. Our clients often live many productive years, and we are called upon to accompany them along the complex journey that comprises their life with HIV disease. Because the breadth and scope of our work has changed, so too must our approach. HIV affirmative counseling provides a new integrated basis for working with HIV-positive clients. The basic tenets of this approach, described in the following sections and the next two issues are that HIV affirmative counseling is a theoretical; developmental; sensitive to issues of sexual and affectional orientation as well as of gender, culture, class, and age; and contextual. It takes a bifocal approach and is systemic, sex affirmative, relationship centered, validating, realistic, and tolerant of anxiety. HIV affirmative counseling also focuses on quality not quantity of life, and on healing, not the cure. It respects a client's choice to live or die, is spiritual, and is about being therapeutic, not acting therapeutic.

Working effectively with our clients living with HIV disease and their loved ones does not depend upon our knowledge of a particular theoretical orientation. HIV affirmative counseling strategies draw from the basic need of people living with HIV disease to be understood. To understand what a person living with HIV feels and thinks, we must turn to many sources. At times our clients' emotional reactions reflect a reinjury of some early childhood experience. At other times, their outlook reflects an irrational thought pattern. HIV affirmative counseling strategies are most effective when we allow ourselves to break through any self-imposed theoretical restrictions we may hold and approach our clients' problems with an open mind and an open heart.

Sadly, today's graduate programs in counseling rarely cover working with people living with HIV disease. Few programs in counseling, psychology, social work, and other related disciplines require a course on HIV affirmative counseling as part of the curriculum. Although we may be highly prepared to counsel people with many different types of problems, this lack of additional education often leaves us unprepared to work with many of the issues with which people living with HIV disease struggle. In addition, many generations of us received our clinical training before the start of the AIDS crisis. Therefore, whether novice or experienced, we can benefit from incorporating the strategies of HIV affirmative counseling into our established theoretical orientation.

HIV affirmative counseling strategies reflect the changes made in the medical treatment of HIV disease in the late 1980s and early 1990s. Greater advances in prophylactic treatment of HIV-related infections and more effective drugs for treating the infections that do arise have extended the life span of those living with HIV disease. Doctors and researchers now consider HIV disease a continuum that begins with being infected, runs through people's first opportunistic infection, and ends with death. As many as 10 to 15 years may pass from the time people become infected with HIV until the time they first exhibit overt, physically disruptive symptoms of illness. Given the increased life expectancy of HIV-positive people, a new set of psychological issues has arisen. Like medical issues, these psychological issues can be placed on a developmental continuum.

Some issues weigh more heavily on our clients when they first decide to get tested. Understanding these issues in the context of this decision is important. The shock of receiving positive test results gives rise to a whole series of issues, including adjusting to being positive, telling others, and continuing relationships with partners. Clients often experience these issues as more pressing at the earlier stages of their illness than when they have grown more accustomed to living with HIV disease.

Although they can affect clients at any time, some issues generally cause more trouble for our clients when they are asymptomatic. These middle-stage issues include dating, sex and sexuality, planning for the future, preventative treatment decisions, strategies for living healthier, workplace issues, and spiritual issues. We can anticipate that the importance of these issues to our clients will wax and wane with time.

Some issues become pertinent to our clients only when they reach the advanced stages of their illness and receive an AIDS diagnosis. Issues of hospitalization and loss, severe neurological decline, and the inability to care for themselves overwhelm many newly diagnosed clients. We err when we think our clients must address all of the issues related to living with HIV in early counseling sessions. Issues like dying with dignity, hospice care, and letting go are best discussed when our clients are ready, not because we are ready.

Although some of the concerns addressed in one stage may spill over to another stage, and some concerns may bridge all stages, the appearance of a concern from a later stage early on in a client's life with HIV disease often serves as an indication of more complex, underlying issues. For instance, some clients who first test positive entertain thoughts of suicide; the thoughts, however, typically do not endure. If a client seems obsessed with suicide at this early stage, it may indicate a deeper psychological disturbance that needs our immediate attention. Similarly, the absence of timely discussion of an early stage issue (e.g., how to negotiate safer sex) may alert us to a client's difficulty in handling that particular issue.

The developmental approach of HIV affirmative counseling reflected in the structure of this book allows us to normalize our clients' feelings. Clients who first test positive have good reasons for feeling concerned about whom to inform that they are HIV positive. Clients who have begun to experience some physiological effects of HIV disease have good reasons for questioning whether to continue work or apply for disability. Clients who can no longer care for themselves have good reasons for beginning the letting-go process. Knowing that our clients' thoughts, feelings, and actions are developmentally appropriate can help us to validate their experiences.

In the early days of the AIDS crisis, counselors, researchers, and even activists separated people into categories. We talked about "high-risk groups," which euphemistically referred to a person's sexual and affectional orientation or ethnicity. Today, we have come to recognize the shared experience of people living with HIV disease. At the same time we need to acknowledge the uniqueness of each of our clients.

In the past, counseling approaches for working with people living with HIV disease tended to focus more on group specifics than on universals. In contrast, POSITIVE and the counseling approach it presents reflect the significance of a client's identity as a whole person living with HIV disease. Wherever possible, it avoids artificial distinctions between men and women, homosexual and heterosexual, whites and people of color, young and old.

At the same time, it is inevitable that our clients' experiences with HIV reflect their sexual and affectional orientation, gender, ethnicity, or age. Tragically, today's society still fosters inequality between the genders. Women are paid less, have less privilege and less power. Similarly, gay men and lesbians face great hatred and violence in their day-to-day life. Members of ethnic communities contend with institutional and individual racism, marginalization, and oppression that persist and thrive across. Young people, too, must overcome ageist attitudes that restrict vital information because "they are too young to know'' and prevent them from making intelligent choices. Tragically, being HIV positive often magnifies the incidence of prejudice. Whenever necessary,

If we do not feel comfortable working with people who identify with one of these groups, for example, gay men, it behooves us to avoid engaging them in HIV affirmative counseling (or any counseling, for that matter). Gender, age, ethnicity, social class, and sexual and affectional orientation are core elements of our clients' personality structures and therefore invariably involved in how they live with HIV disease. We cannot affirm their experience of living with HIV disease without affirming their experience of being gay, a woman, a poor person, an ethnic person, or a youth. Counseling should never be used as a vehicle for converting our clients, for getting our clients to act less gay, less ethnic, less (or even more) religious. Before beginning this work, we should examine our motives, our own sexual, cultural, and gender identity. It is crucial that we remain sensitive to all of our clients' hopes, dreams, and fears.

HIV affirmative counseling exists in the context of social and political forces. Drawing from the tenets of feminist psychology, we cannot conduct HIV affirmative counseling without working to change the political and social system that oppresses people living with HIV disease. For example, we cannot work to instill hope for the future in a client without also working for the allocation of more funds for AIDS research. By virtue of our training, education, and experience, we can be powerful spokespeople in the fight against AIDS. We have an obligation to use the power associated with our position to fight for HIV-related services, HIV-related prevention programs, and HIV-related research on local, state, and national levels.

For most HIV-positive people, the political and social transformation needed to improve their lives comes too slowly. Validating the frustration and anger our clients feel when budgets get cut, agencies close, and programs end plays a big part in HIV affirmative counseling. When people live with HIV disease, the personal becomes political and the political personal.

As counselors, we must work as though we are wearing bifocals. Bifocals allow both long-range vision and close vision, although not at the same time. We need to differentiate between our clients' HIV-related dynamics and their character logical dynamics. The dangers inherent in dropping this bifocal approach can be seen in the following example.

A counselor in supervision was describing a client he saw for a few sessions. The client had tested positive 6 months earlier and came into counseling because he was having problems getting along with his friends. Whenever they went out, he drank and nobody wanted to be with him. The counselor was convinced that the client was pushing away his friends because of his unconscious abandonment issues and his ambivalence about his friends' ability to stay with him when he got sick. Not once did the counselor ask about the client's drinking or make any attempt to determine whether the client was a practicing alcoholic. When asked about this oversight, the counselor replied that he didn't think the client's drinking was as important as his HIV positivity.

Good HIV affirmative counseling interventions take into account both clients' personal dynamics and their HIV-related dynamics. We must avoid assuming that every issue our HIV-positive clients want to discuss in sessions is about AIDS. Similarly, we must explore with clients issues that could be HIV related but which our clients avoid addressing in HIV-related terms. We want to take care to avoid either shortsightedness or farsightedness.

HIV affirmative counseling strategies acknowledge the far-reaching effect of a client's HIV-positive status. The progression of a client's HIV disease impinges upon a client's spouse or partner, friends, and family and often necessitates their inclusion in counseling sessions. HIV affirmative counseling strategies recognize that people living with HIV often create their own families and do not necessarily rely on blood relatives for support.

A major task of HIV affirmative counseling is the assessment of our clients' support systems. This is addressed throughout this book, particularly in the chapters on continuing relationships with partners, on dementia, and on letting go. Whenever possible, we want to make sure that those who take on the role of caregiver receive adequate physical, emotional, psychological, and spiritual support. At times we need to provide additional sessions to clients and their partners, friends, and family or to provide referrals to other counselors or support groups.

Friends, partners, and family members who have repeatedly lost those close to them may suffer from multiple loss syndrome. These people often need to engage in psychic numbing, and we must not see their lack of traditional bereavement reactions as pathological. At the same time, we must help them to create the opportunities necessary for processing their grief.

HIV disease combines two things most people refuse to talk about: death and sex. Sadly, many of us (and our clients) mistakenly believe that with respect to HIV disease, sex and death are one and the same. We incorrectly think that once clients test HIV positive their sex life ends. Sex can provide people with powerful ways of expressing themselves. The sexual act can offer the opportunity to connect with others in an extremely intimate way. Therefore, we must support our HIV-positive clients in continuing to pursue an active sex life. Certainly accommodations must be made to prevent the transmission of HIV, and we need to take a hard stance regarding the importance of safer sex practices.

As counselors, we need to explore our own resistance to talking openly about sex and sexual activities. Those of us who work with clients living with HIV disease must be able to speak directly and explicitly about everything from how to put on a condom before engaging in anal intercourse to how to use a dental dam when engaging in cunnilingis. We need to be equally comfortable listening to gay and non-gay clients describe their sexual desires. We need to speak comfortably with our clients using their own words. Using clinical textbook language to describe important and pleasurable activities for our clients rarely coveys acceptance.

Many of us naturally assume that we are comfortable discussing sex. However, unless we have worked hard to break through cultural and familial taboos related to discussing sexuality openly, we may fall short of the degree of ease needed to support and encourage our HIV-positive clients. Our clients will pick up on the smallest sign of discomfort we may display and decide never to talk about sex again. Our clients are then left to struggle alone with their own feelings about being HIV positive and having sex; unfortunately many of their feelings may prohibit them from having a fulfilling sex life. We must constantly strive to ensure that this does not happen.

HIV affirmative counseling focuses on the relationship between the counselor and the client. Living with HIV disease often strips clients of their humanity. People, even those dearest to them, become afraid to touch them, to work with them, to get close to them. The counseling relationship can provide the antidote to the social, emotional, and spiritual isolation many people living with HIV disease experience. HIV affirmative counseling strategies rely on the development of a supportive, validating relationship. To develop such a relationship we must "get wet" with our clients. We cannot remain emotionally distant; to do so recreates inside the consulting room the isolation of the outside world. We must drop any preconceived notions of how a client should respond to his or her illness.

This approach to coping with the tragedy of having a life-threatening illness may be likened to a lesson my wife and I learned on a rafting trip on the Salmon River in Idaho some years ago. �The exhilaration of negotiating our way around the rocks made us acutely interested in the skills of our guides in steering the rafts. They pointed out that the most common mistake novices make is to waste energy pulling against the current of the river. . . . The way a good guide steers is by moving the boat perpendicular to the flow of the stream. This means that YOU accept the direction, but the quality of your trip is influenced enormously by which portion of the onrushing flow you ride. �It struck me that there was a lesson in life in that river. Coping with cancer or another serious illness can benefit from this rafter's wisdom. The ultimate direction has been determined, and opposing it is exhausting and futile. However, the nature of the trip and how safe and pleasant it is can be enormously influenced by maneuvering within this fundamental direction.

The importance of the counseling relationship demands that we avoid injuring clients in the same way as others in our clients' lives do. If clients feel rejected by others in their life, it behooves us to determine what we may have done to reject them. We must take care not to deny our clients' views of the counseling relationship. If clients perceive us as rejecting, then we must assume that the feeling is based in reality in some way. Here the distinction between effect and intent is often helpful. Although we may not have intentionally rejected our clients, our words or actions may have had this effect. We must affirm our clients' reality, own the effect of our actions, and address any ruptures in the therapeutic relationship that occurred. We must always keep in mind that the counseling relationship may be the only relationship that provides our clients with support, affirmation, and validation. Thus preserving the counseling relationship must be our primary goal.

Showing true validation for our clients is more difficult than most of us realize. To do so, we need to affirm their so-called positive thoughts and feelings and their negative thoughts and feelings. Both express clients' essence and both need validation. Validating our clients' positive and negative sides becomes even more challenging when they are living with HIV disease.

On a deep level, most of us want our clients to feel better and to live happier, more productive lives. Most of us can readily validate our clients when they behave the way we want them to (e.g., when they act more assertive, less depressed, more active, less isolated). We can easily validate clients living with HIV disease when things are going well. We rejoice when they stop worrying about their CD4 cells (a commonly used marker for HIV progression--a significant drop reflects the amount of damage to the immune system). We smile when they talk about feeling hopeful and optimistic. We feel happy when they let go of their anger. But this comprises only half the picture.

Typically, clients have numerous sources of validation that are conditional upon their acting positive. Their partners, families, and friends may all encourage them to remain optimistic. This constant reinforcement of the positive causes many clients to split off and repress what they consider to be their negative side. If we only act in the same way as others in the clients' life, clients may have no place to express and fully experience anger, fear, and despair. HIV affirmative counseling recognizes that the validation of negative feelings can have a powerful effect on people's sense of self. For many clients, our office is the only place in which they can express their fear of dying, their anger at their partner, or their boredom over repeating uplifting sayings. However, our clients can only express the wide range of their feelings when we make it absolutely clear to them that we consider all of their feelings equally significant. We may find it difficult to sit with HIV-positive clients who feel hopeless and helpless without wanting to rescue them from their feelings, but we must do so. We cannot lose sight of the value people living with HIV disease find in having at least one place where they can receive affirmation and validation for the totality of who they are.

As counselors, we must maintain realistic goals both for our clients and for ourselves. It is unrealistic to think that our clients will totally and drastically transform their lives because they test HIV positive, even though this has been known to happen. Most clients live with HIV disease the same way they lived before becoming infected. Counseling goals need to reflect the reality of clients' past histories and current life situations. We must take care not to indulge in unrealistic fantasies that our work helps clients live longer. The life span of clients living with HIV disease is so multidetermined that even the best HIV affirmative counseling may have little effect. However, it is realistic to think that HIV affirmative counseling improves the quality of our clients' lives.

In the counseling relationship it is important that one member remain grounded in reality at all times. If our clients become convinced that a cure for AIDS will made be available within the next year, we need to provide the reality check. Without discouraging our clients' feelings of hope, we must invite them to explore what may happen if a cure is not discovered. This is particularly important when our clients' unrealistic beliefs seduce them into acting in a potentially harmful way (e.g., going against their physician's orders). At the same time, when clients take a limited view of reality (e.g., an effective cure for AIDS will never be found so there is no reason to continue to fight), it is up to us to present an alternative version of reality (e.g., remembering that researchers conduct new studies every day). We must carefully present this alternative view in a way that avoids invalidating our clients' thoughts and feelings. At the same time, we must also avoid offering clients unrealistic reasons for optimism (e.g., people who are fighters like you don't get sick). We must strive to strike the balance between maintaining hope and accepting painful realities.

Living with HIV disease produces extreme anxiety. However. HIV-positive people are often told to stop being stressed. Our clients become trapped in a double bind; concern over the functioning of their immune system leads to stress, which they are told weakens their immune system. Ironically, this secondary stress, or stress about stress, often proves most harmful to clients.

Working effectively with clients living with HIV disease obligates us to explore our own tolerance for anxiety. If we are to be truly present with our clients, then we need to contain their anxiety. To do this, we must remain non reactive. However, we can act as a container only to the degree that we can tolerate our own anxious feelings. The more anxiety-tolerant we become, the more we can work productively with our HIV-positive clients' anxiety. HIV Affirmative Counseling Focuses on Quality Not Quantity of Life HIV affirmative counseling strategies concentrate on helping to improve the quality of our clients' lives. We must remember that most clients do not need our help to find ways to extend their lives. Our clients' physicians or holistic practitioners make more than enough life-extending suggestions. Most clients' friends or support networks eagerly share the latest cure for AIDS. Other people, however, rarely provide a sounding board for the examination of ways to make life more enjoyable regardless of its length. Thus this task gets relegated to us. Some people living with HIV disease may have never given much attention to issues of life quality prior to becoming infected. Developmentally, they may be unprepared for the psychological search that constitutes discovering what gives their life meaning. We can assist these clients with this process. Other clients may find their previously determined notions of a quality life drastically altered by their HIV status. We also can support these clients as they work to find new ways to fill their life with meaning.

Before we can focus on curing we must ask, "Of what do our clients need to be cured?" Certainly, we cannot cure clients of HIV disease. Nor will counsel cure clients of their fear, sadness, hopelessness, or helplessness. These are all natural reactions to living with a life-threatening illness. Therefore, HIV affirmative counseling does not seek to cure clients.

Instead, HIV affirmative counseling focuses on healing, on encouraging clients to grow whole. To become healed, our clients must integrate the part of themselves from which they have become separate-the part that they rejected. This may be their illness, their anger, their depression. It may be their hope, their joy, and their love. It may be their relationship with self or others. We must work to help our clients see value in all of their parts and in all of their experiences.

Often our clients (and we) confuse what it means to be healed with what it means to be cured. Clients sometimes believe that if they work hard to develop themselves, to enlighten themselves, the will become free from HIV disease. Intensive counseling and self-reflection may help free our clients from dis-ease (i.e., uneasiness with themselves), but counseling and self-reflection rarely free them from the physical attack of the HIV virus. We must help our clients (and ourselves) come to see healing, or wholeness, as a valid goal in and of itself, regardless of its effect on the physiological functioning of the immune system.

Another important aspect of healing is that it can occur even while our clients are in the process of dying, of letting go. HIV affirmative counseling recognizes the importance of preparing for death, of healing those things that may make death difficult. Whereas cures are of the flesh, healing is of the spirit. Even when our client near death and the time for cures is over, time still remains for healing.

Counseling people living with HIV disease is a spiritual endeavor. Questions about existence and the meaning of life are concerns of the soul. A client's life with HIV disease undoubtedly raises many spiritually oriented questions. Although some clients turn for guidance to clergy instead of, or in addition to, a counselor, many clients living with HIV disease feel estranged from organized sources of spiritual comfort. We may be a client's only source of spiritual guidance.

To create an atmosphere that encourages clients to aspire to goals spiritual in nature, we need clarity about our own religious and spiritual beliefs, or lack of beliefs. This is equally important for those of us who hold devout religious beliefs and those of us who have rejected all forms of religion or spirituality. Often these religious beliefs (or lack of beliefs) prevent us from understanding and attending to our clients' needs for spiritual sustenance. We need to be open to the deeply personal tones our clients' spirituality may take. If we are, we may be amazed by the myriad ways our clients' spirituality expresses itself.

It is not uncommon to worry about what we should do with our HIV-positive clients. The answer is doing nothing. We should instead be with our clients. I believe that the model for the therapeutic enterprise is not the distant, hierarchical relationship that exists in most of orthodox psychotherapy', but rather in an intimately engaged encounter between the therapist and the person. . . . This kind of situation ought to be as natural, pedestrian, direct, and free from artifice as is possible in the paradox of a relationship lived within the constraints of a therapist's office.

Ofman elaborated upon the distinction between the therapeutic act and acting therapeutic by quoting a 1973 statement by Lomas that this way of counseling is An ordinary interpersonal activity and the special technical procedures to which psychotherapists resort are, at best, of secondary importance and, at worst, inhibiting factors. The belief that it is primarily a technique is, to a large extent, a defensive maneuver . . . designed to avoid the pain, risk, and uncertainty of emotional involvement.

HIV affirmative counseling strategies encourage a genuine encounter between human beings. Our clients typically feel assaulted by their humanness and by' their illness, and they therefore try to deny their vulnerabilities and their human frailties. What clients need is another human to mirror the act of being human. Our clients need us--not for the brilliance of our interventions but for the humanness of our actions.

By now it should be clear that we need not feel obligated to offer our clients living with HIV disease flashy techniques or interventions. The vast and ever-changing expanse of information about the physiological and psychological aspects of HIV disease virtually ensures that this is impossible. Instead, we can offer our clients ourselves. Simply put, HIV affirmative counseling is about providing our clients an experience of respect and validation for their lives with HIV.

This book offers a way' of approaching the course of our clients' HIV disease and working with the issues that arise along the way. As is always the case, there are many ways to get from start to finish. Each of our clients' journeys is distinctive. Therefore, HIV affirmative counseling is always a unique endeavor, and we should always stay open to its newness.

The need for additional, qualified HIV affirmative counselors increases each day. Tragically, because people continue to become infected with HIV, counselors will continue to be needed in the future. Tragically, because some of us have been working with HIV-positive clients for well over a decade, we are burning out. The issues of counselor grief and burnout. It looks at the many things we (and others who provide emotional support to people living with HIV disease) must do for ourselves in order to ensure that we sustain our ability to care for those who need us.

In spite of the mourning we ourselves do, we should take great care so as not to forget that HIV affirmative counseling can be an extremely rewarding enterprise. If we are open, we can learn much about life from our clients, many of who become wise beyond their years. Our HIV-positive client's touch us enliven us, and inspire us.