Existential Dimensions of Surviving HIV:
The Experience of Gay Long-term Survivors

Silvio Machado, MA MFTI

In 1981, the United States was forever changed by news reported out of New York, San Francisco, and Los Angeles identifying a strange constellation of mysterious symptoms in immune compromised gay men. Cases of unusual skin cancers and pneumonia cropped up across a handful of hospitals in these major urban centers. By the end of 1981, the Centers for Disease Control (CDC) reported that approximately 250 people in the United States were dead as a result of complications related to this new, unidentified syndrome.

In 1983, the Human Immunodeficiency Virus, otherwise known as HIV, was discovered in France and identified as the cause of Acquired Immune Deficiency Syndrome or AIDS (AIDS Education Global Information System, 2009). For the gay community, the carnage of AIDS reached its height in the late 1980s and early 1990s as thousands of gay men died, while their lovers, friends, and families looked on in shock and despair. In 1996, with medication combinations or "cocktails" that included protease inhibitors, a new class of HIV medications that far exceeded results seen with previous classes of drugs, the epidemic in the gay community slowed. New drugs meant improved health for HIV infected gay men, as HIV viral loads dropped to undetectable levels and CD4 immune cells flourished. Cases of opportunistic infections were reduced dramatically and the number of gaunt and wasted faces common in the late 1980s in New York's Village or San Francisco's Castro Street diminished.

Today, nearly 30 years after those first shocking cases, AIDS remains a daunting reality. The epidemic in the United States has spread beyond the bounds of sexual orientation, age, race, gender, class, and ethnicity. Women, for example, now account for nearly one quarter of all new HIV/AIDS diagnoses (CDC, 2008). Further, recent research on the interplay of race, ethnicity, and HIV has revealed startling patterns of infection among minority groups. Black and African American individuals now comprise over one-half of HIV/AIDS cases in the United States (CDC, 2009), while the current leading cause of death among Black and African American women between the ages of 25 and 34 is HIV/AIDS (CDC, 2008). These statistics make clear the devastating reach of HIV; however, the gay community has been, and continues to be, most heavily impacted by the epidemic. In 2005, for example, adult and adolescent Men who have Sex with Men (MSM) comprised 71% of all HIV infections in United States (CDC, 2007). More recent data indicate that nearly 600,000 gay, bisexual, and other MSMs are living with HIV/AIDS in the United States today (CDC, 2009). As infection rates rise and, owing to advances in antiretroviral medications (ARVs), infected individuals live longer, this number will only increase in the years to come.

While confronting death was the primary challenge early in the epidemic for HIV infected gay men, long-term survivors are now confronted with life-a prospect that many never expected. Living with HIV/AIDS comes with the complexities of managing a chronic disease in the face of a stigmatizing and oppressive culture. Though HIV/AIDS is now conceptualized as a chronic illness, the trauma of first diagnosis, the lingering prospect of physical deterioration, self-blame and shame, isolation, problems with disclosure of HIV-status, and the impact of multiple losses during the height of the epidemic remain constants in the lives of long-term survivors.

Given their profound quality, these difficulties are best understood within an existential framework (Farber, 2009; Nilsson Schönnesson & Ross, 1999). In an existential framework, "man as being" and the "structures of [his] existence" are central to understanding the problems with living faced by human beings (May, 1958, p. 37). Existential psychotherapy is therefore particularly suited to assist HIV infected gay men "look within and attend to [their] existential situation" (Yalom, 1980). Existential psychotherapy's appreciation for the ontological and profound aspects of life such as freedom, guilt, choice, and death, coincides with the varied experiences of long-term AIDS survivors. In the following pages, the existential dimensions of the experience of gay long-term survivors are examined, with a particular emphasis on the existential givens. It is the author's hope that translating the specifics of surviving with HIV will provide others with a beginning foundation upon which to build clinical work with this enduring and courageous population.

HIV and the Givens of Existence

HIV disease can bring a certain weight to the existence of the infected person. Physical symptoms, regular medical appointments, medications, unpleasant side effects, sexual risk, and disclosure of HIV status all shape the individual's worldview and are routine in daily life. For those who are disabled, fears about the future, financial uncertainty, and the limitations of living on a fixed, government-subsidized income loom close. Many long-term survivors isolate themselves for fear of "being found out," while others withdraw from the world of friends, family, and lovers as close relationships have become associated with the overwhelming loss and trauma trauma seen early in the epidemic. These and numerous other stressors can lead to a pervasive anxiety that strikes at the core of the individual because these stressors undermine one's sense of identity as an existing being.

The existential approach posits that certain fundamental challenges are inherent in the human condition, and that these challenges, when encountered, lead to a variety of reactions, ranging from anxiety and despair to creativity and transcendence (Bugental, 1965, 1987, 1995; Greening, 1971; May, 1961; Yalom, 1980). Irvin Yalom and James Bugental conceptualized these existential givens each in their own unique way. Yalom (1980) proposed death, freedom, isolation, and meaninglessness as the ultimate concerns of existence, while Bugental (1965, 1987) offered finitude, potential to act, choice, separateness, and embodiedness as the basic givens of being. Obvious parallels exist between these paradigms, while differences are also apparent. Taken together, the ultimate concerns and basic givens provide an excellent framework in which to understand the multi-dimensional experience of gay long-term survivors of HIV/AIDS.

Before elaborating on the givens, a brief word is warranted about the central concept of anxiety and its place in the existential approach. Rollo May described anxiety in the following way: "Anxiety is the apprehension cued off by a threat to some value that the individual holds essential to his existence as a personality" (May, 1950/1977, p. 205). Later May proposed that anxiety is "the experience of the threat of imminent non-being...the subjective state of the individual's becoming aware that his existence can become destroyed, that he can lose himself and his world, that he can become 'nothing'" (May, 1958, 50). Whereas fear differs from anxiety in that fear takes form in an object that threatens one's existence, anxiety "is objectless because it strikes at the basis of the psychological structure on which the perception of one's self as distinct from the world of objects occurs" (May, 1950/1977, p. 207).

May's poignant description of anxiety sheds light on the way in which HIV/AIDS threatens the ontological roots of the infected person's existence. The existential givens are manifested in the various challenges HIV/AIDS presents to the long-term survivor. As Yalom (1980) explained, anxiety results from awareness of these manifestations and their underlying meaning. For the HIV infected individual, awareness is unavoidable, as managing a chronic illness consists of facing these challenges on a daily basis. Awareness of the existential dimensions of one's existence-which inevitably point to the threat of non-being-in turn can lead to the use of defensive or creative strategies in an attempt deny and diminish anxiety, in the case of defensive responses, or synthesize, integrate, and transform anxiety, in the case of creative responses. As Bugental (1987) cautioned, however, anxiety cannot be denied or rationalized away, "it can only be confronted steadfastly as possible and then incorporated into one's being" (p. 238).


HIV/AIDS brings to the fore a fundamental yet often overlooked fact: every human being exists in a body. The numerous and complex ways in which HIV disease impacts the body also influence the individual's perception of himself, since the body is usually tied to one's subjective experience of identity. To begin with, the contraction of HIV is an embodied experience, as HIV is contracted during the exchange of bodily fluids. Most often this exchange occurs during sex, usually an enjoyable experience between individuals; however, sharing syringes and needles during injection drug use is another common mode of transmission.

The unpredictable symptoms of HIV disease arguably pose the greatest challenge in facing the given of embodiedness. While symptoms vary, the most common among people living with HIV/AIDS include fever and night sweats, diarrhea, nausea and anorexia, neuropathy, and headaches (Wu et al., 2004). Often accompanying symptoms of HIV are the unpleasant side effects of ARV therapy. Common side effects include fatigue, problems with digestion, neuropathy, and anemia (AIDS InfoNet, 2008). Physical symptoms and medication side effects have a psychological impact that manifests in many long-term survivors as a sense of being betrayed by the body (Imes, Rose Clance, Gailis, & Atkeson, 2002) and in feelings of helplessness, mourning, and despair (Nilsson Schönnesson & Ross, 1999).

Adherence to ARVs is an important issue in the treatment of people living with HIV/AIDS that falls under the given of embodiedness. Optimal adherence, which occurs when the HIV infected individual takes medications as prescribed at least 95% of the time, results in viral suppression to undetectable levels and decreased disease progression. Suboptimal adherence, on the other hand, results in the emergence of resistant strains of HIV and failure of ARV regimens (Nischal, et al., 2005). While much of the research on ARV adherence has revealed important information about factors that contribute to adherence and non-adherence, adherence must be understood within the existential context of the individual's life (Wright, 2000). From this perspective, the issue of adherence extends far beyond following the doctor's orders and instead taps into "core questions of human existence which cannot be 'solved' by medicine or by any other means" (p. 708). These core questions are indelible to the HIV infected individual's confrontation with his body, as both the positive (i.e., viral suppression) and negative (i.e., side effects) experiences of adherence inform his decision to fully engage in treatment.

Bugental (1987) proposed that the givens of existence create an inescapable challenge that every person must face. The challenge posed by embodiedness is the confrontation with change. For the long-term survivor of HIV/AIDS, change is the consistent characteristic of life, as he experiences the unpredictable daily changes of symptoms and side effects, along with the long-term changes that have occurred in his body over the course of his disease. Further, change is manifested in the narrowing of his mitwelt, or "the world of interrelationships with human beings" (May, 1958, p. 62) as problems with the body can limit his engagement in social and work activities.

Isolation and Separateness

Bugental (1965) succinctly described the ontologic given of separateness in the following way: "we are separate from yet related to others" (p. 39). This fact of existence results in feeling a part of humankind and simultaneously apart from one's fellow human beings. Bugental proposed that at the core of separateness lies the anxiety of total isolation from the world and those in it, the fact that no one can live or die for another. For Yalom (1980), isolation is awareness of the "unbridgeable gulf between oneself and any other being...the separation between the individual and the world" (p. 355).

Accordingly, separation leaves each human being alone and calls attention to the fact that each of the existential givens-even, ironically, isolation-is faced on one's own. For example, Yalom (1980) described the relationship between death and isolation, stating, "It is the knowledge of 'my death' that makes one fully realize that no one can die with one or for one" (p. 356). Later, describing the link between isolation and freedom, Yalom noted,

To the extent that one is responsible for one's life, one is alone. Responsibility implies authorship; to be aware of one's authorship means to forsake the belief that there is another who creates and guards one. Deep loneliness is inherent in the act of self-creation. (p. 237)

Isolation is common in the lives of many HIV infected individuals (Mayers & Svartberg, 2001). Living with HIV/AIDS manifests existential isolation in a variety of particularly salient ways. Most obvious is the fact that the individual, regardless of the support of friends, family, lovers, doctors, and social workers, faces the experience of HIV/AIDS alone. Engaging in medical care, adhering to medications, eating right, and exercising are all decisions that one makes alone, despite the pleas of doctors and the support of nurses. Further, in the case of the long-term survivor, memories from the height of the epidemic-of funeral processions, wasted faces, and unrelenting loss-are solely the individual's to be experienced in isolation. And while the individual has these experiences in common with thousands of others (a part of), others cannot live the individual's experience of these experiences for him (apart from).

While the existential approach takes existential isolation as an indelible characteristic inherent in the structure of being, the stigmatization of HIV/AIDS leads to interpersonal isolation (Yalom, 1980) for many infected individuals. Social isolation, which differs from existential isolation, is most often described in quantitative terms as the number of social contacts available at any given time to an individual (Lauder, Mummery, Jones, & Caperchione, 2006). Social isolation evokes loneliness, which is conceptualized as the subjective experience of isolation. Of note, social isolation and loneliness have been linked with poor health outcomes across a range of medical conditions. Berkman et al. (2004) found that social isolation and loneliness were predictors of early death from cancer, accidents, and suicide. Other research has linked social isolation to heart disease and depression (Lauder et al.). Taken as an example, HIV/AIDS stigma illustrates one of many ways in which the existential experience of HIV infected persons is shaped by their disease.

In his discussion of the limits of freedom, May (1981) described both the natural and self-imposed limitations of living, which confront the individual's existence. As an unfortunate social dynamic that acts to isolate the HIV infected person, stigma can be conceived of as a natural limitation of living. Herek (1999, 2002) argued that there are four characteristics of HIV/AIDS that evoke stigma. The first is that stigma is more often associated with a disease if its cause is perceived to be the bearer's responsibility. If it is perceived that a disease is contracted through voluntary behavior, it is more heavily stigmatized, especially if that behavior elicits social condemnation. Barring perinatal, or infection of the fetus during pregnancy, and work-related exposure, as mentioned above, HIV is usually transmitted during sex or intravenous drug use, two highly taboo behaviors.

Second, Herek (1999, 2002) maintained that diseases considered degenerative and terminal elicit stronger stigma. Though effective ARVs have been developed, many unfamiliar with HIV still perceive it as a death sentence (Gazzard & Jones, 2006; Holzemer & Uys, 2004). Third, diseases perceived as contagious evoke more stigma than other diseases (Herek, 1999, 2001). Since the first reported cases of HIV, perceptions of danger and fear of contagion have marked the epidemic in both the United States and around the globe. Lastly, Herek (1990, 2002) argued that the more apparent or visible a disease is to others, the more likely it will be stigmatized, especially if it is perceived as unsightly, ugly, or disturbing. Advanced stages of HIV disease can impact the appearance of those who are infected, often evoking distressed and stigmatizing reactions from others. Such changes in appearance include those caused by ARVs, such as facial and limb wasting, or loss of muscle mass, and fat redistribution in the body.

Bugental (1987) suggested that the challenge posed by separateness is the confrontation with a-partness, or the confrontation with the dialectic of belonging and aloneness. Greening (2003) proposed various responses to each of the existential givens, ranging from the pathological to the creative. In reference to isolation, he suggested that a creative confrontation means

Willingness to risk I-Thou encounters in a world that necessarily and often tragically entails I-It relationships. Commitment to connect authentically with other people in spite of being aware of the hazards and barriers to intimacy. Courageous offering of oneself while feeling compassion for one's fears and hurts and those of others. (pp. 4-5)

For the HIV-infected individual, this translates to building community in spite of previous losses, overcoming the barriers and fears associated with connection, and learning to utilize shared experience to create authentic encounters.

Freedom, Choice, and the Potential to Act

That human beings have freedom to choose within the parameters of natural limitations is a central tenet of the existential approach. Bugental (1965) proposed potential to act and choice, as the givens of existence related Yalom's (1980) freedom. The potential to act refers to the human capacity to effect change, both internally in the individual's perspective and attitude, and externally in the world. The potential to act is the individual's responsibility to respond to the confines of living, rather than idly allowing life to unfold without intention. Acting, however, involves choice. Bugental stated, "...we know too our finiteness and the ever-present potentialities of contingency. Thus our action must be chosen in a way that expresses our concern in the midst of contingency" (Bugental, 1965, p. 38). Here Bugental pointed out that within the limitedness of one's "thrownness" (Heidegger, 1962) is the experience of autonomy, despite the arresting nature of presenting circumstances.

According to Yalom (1980), freedom, is the human capacity to create oneself through decisions. Inherent in freedom are the responsibility for the decisions that shape one's life and the will to make these decisions based on an inner desire. Phrased another way, responsibility means "authorship" (Yalom, 1980, p. 218) and refers the way in which one imbues life with meaning. The process of authorship is energized by the will, which fuels the identification of an end and the means by which it is to be achieved. May (1969) described will as "the capacity to organize one's self so that movement in a certain direction or toward a certain goal takes place" (p. 218). As with Bugental's (1965) conception, freedom, responsibility, and will are embedded in the contexts of existing limitations.

As an imposing limitation, HIV brings the fundamental truth of freedom to the fore in the life of the infected individual. Simply put, the gay long-term survivor of HIV is free within the context of his chronic illness, the history of his experience of living through the height of the epidemic, the unwelcoming and homonegative social context, and a host of other life-limiting and life-constricting factors. It is not, however, that the infected individual simply exists in a world of limits as a victim of determining circumstances. Instead, as a free and willful being the HIV infected person is not defined by determinism, but shaped by his response to it. As May (1969) wrote, "Man is distinguished by his capacity to know that he is determined, and to choose his relationship to what determines him" (p. 269). In the case of the gay long-term survivor, freedom refers to the way in which one relates to one's infection, to one's history of loss, to homophobia in the world. Does the individual shrink away from his responsibility to shape his life with intentional choice "in spite of" (Tillich, 1952/2000) HIV, medication side effects, and stigma? Or does he meet the world, in all of its limitations, and responsibly accept his part in creating a life for himself that is meaningful "in spite of" absurdity?

There are numerous ways in which issues of freedom, will, responsibility, choice, and the potential to act manifest in the HIV infected individual's life. Disclosure of HIV status to sexual partners is one issue of freedom and responsibility with weighty implications. The infected individual must decide on a course of action, either to disclose his status, possibly facing rejection, practice safer sex or expose his partner and bear the consequences. In their review of the literature on moral agency and the sexual transmission of HIV, O'Leary and Wolitski (2009) argued that moral agency takes various forms, including personal responsibility. Their review revealed that the majority of HIV positive participants in the studies reviewed relied heavily on moral agency when making decisions about disclosure and safer sex practices with seronegative partners. Most studies correlated safer-sex behaviors with levels of moral agency, which was determined by beliefs about the importance of not infecting others. However, in cases where substance abuse and sexual compulsivity were complicating factors, there was no correlation between moral agency and safer-sex practices, suggested that, in existential terms, these factors interfere with the translation of responsibility to willful action.

In their grounded theory study of 18 HIV positive urban men of varied sexual orientations, Relf et al. (2009) found that issues related to the disclosure of HIV status varied among participants depending on the type of relationships shared between participants and their partners. Three categories of choices emerged in the data: choices made by those who avoided sex; choices made by those who considered their sexual relationships "just sex" (p. 280); and choices made by those who were having sex in a relationship that was "going somewhere" (p. 280). As might be expected, participants in the "avoiding sex" (p. 280) category reported not having sex since their HIV diagnosis because of concerns about infecting partners. Those in the "just sex" category did not report feeling obligated to disclose their status to their partners, regardless of the nature of the sex (i.e., low risk or high risk). Lastly, participants in relationships that were "going somewhere" reported significant efforts to disclosure their status early in their relationships.

As Relf et al. (2009) concluded, given the passing nature of the sexual contact between participants in the "just sex" category and their partners-contacts that were primarily anonymous-disclosure was less of a priority. This finding reflects the importance of contextual factors (e.g., types of relationships) and their impact on how individuals respond to the existential givens. It is important to note, however, that the results do not suggest that participants in the "just sex" category are incapable of responsible choices. More research is needed to understand the way in which these participants appreciate their freedom and the impact of their choices.

Apparent in the entire existence of the long-term survivor is the freedom to live or die, both in the physical and psychological sense. The infected individual can isolate from the world, deny medical care, and succumb to disease and therein choose death. On the other hand, the individual can commit to medical treatment, build community, seek professional support from a therapist, and engage in a myriad of other health support activities, thereby choosing life. As May (1969) insightfully noted in reference to physical disease, "The 'cure' or management of [illness] can come only with the widening and deepening of the patient's own consciousness in relation to his body, and with his active participation in his own cure" (p. 188). It is not enough that the HIV infected individual passively receives treatment from doctors and nurses, but instead he must see health and disease management an achievable goal and willfully commit himself to the arduous journey with each decision he makes.

The capacity to commit oneself, however, is hard won, and for many is an underdeveloped capability that requires cultivation and practice. This is so for two primary reasons. First, in committing oneself to life when one could choose death, the HIV infected individual is suddenly responsible in a whole new, previously unrecognized way for his health. As Yalom (1980) pointed out, such awareness leads to a sense of groundlessness, and in turn, to a profound sense of isolation, for the infected individual must face the facts of his existence alone. HIV is a formidable and irrevocable fact of his existence.

The second barrier to ongoing commitment is what might be called psychological depletion. As one patient remarked, "I'm sick and tired of being sick and tired." While ARVs have decreased morbidity and mortality rates, unpredictable symptoms and medication side effects are regular occurrences for many people living with HIV/AIDS. Cycles of health and sickness leave many exhausted and fatalistic about the future, while still others are bothered by painful memories of the past of lost lovers and friends. Medication adherence becomes burdensome and some individuals are tempted to take "medication holidays." Taken together, along with the sociopolitical climate, shrinking resources, and frequent encounters with unwelcoming and stigmatizing attitudes, many gay long-term survivors ask, Why go on? Commitment is equated to prolonging a dreadful life over which one has no control. The individual is challenged find freedom amidst the absurd and tragic circumstances with which he is confronted, and this by no means is an easy task.

May (1967) called an individual's freedom "a quality of action of the centered self" (p. 176) that "is limited by his body, by illness, by the fact that he dies, by the limits of his intelligence, by social controls, ad infinitum" (p. 178). This statement very eloquently captures the experiences of gay long-term survivors described above. Further, it names that which becomes blocked-the "centered self"-by the anxiety associated with ultimate responsibility and the fatigue of psychological depletion. Greening (2003) described responses such as fear of freedom and psychological depletion in more general terms, calling such responses:

Escape from freedom and choice...Abdication, surrender to tyrants [e.g., those who stigmatize], self-enslavement, fatalism, codependency, family enmeshment, substance abuse. Building a "case" that life itself or other people or our economic or physical limitations [e.g., HIV] totally imprison and predestine us. (p. 4)

Bugental (1987) suggested that the challenge posed by the potential to act is the confrontation with responsibility, while the challenge of choicefulness is the confrontation with relinquishment. The confrontation with responsibility calls the individual to step into his existence as an active force rather than living as a "hapless observer" (p. 239). This point echoes May's (1969) remark above that the individual must actively participate in the cure of his disease. Bugental's confrontation with relinquishment, on the other hand, points to the fact that in a world of endless possibilities, every choice occurs to the exclusion of other choices and that in choosing, one must let go of the other possible choices available to him. Greening again offered the following creative confrontation with freedom: "Exploration and expansion of freedom with awareness of the interpersonal and physical context. Self-assertion with humble respect for one's finiteness, and gratitude for one's powers, however limited. Celebration of acts of apparent courage and freedom against the odds" (p. 4).

For the long-term survivor, a creative confrontation with freedom and choice means deciding to live and taking responsibility for this decision. It means investing in health supporting activities while expecting the usual setbacks that come with any chronic illness. Further, it means taking responsibility for one's disease and making efforts to prevent its unnecessary spread to others. Lastly, it means advocating for oneself as a person with HIV, and in turn, advocating for others. While this list is not exhaustive, it illustrates the nature of a courageous encounter with the given of freedom.

All of the givens inevitably lead to the quest for certainty or some surety about one's place in the universe. This quest comprises its own separate given: meaninglessness.


The given of meaninglessness is intimately linked with freedom and responsibility. Because the existential approach asserts that the world has no inherent meaning and is in fact contingent, the individual is self-constitutive agent that imbues experience with created meaning. Meaning is indispensable to the human condition; in fact, Viktor Frankl (1959), the developer of logotherapy and concentration camp survivor, posited that "man's search for meaning is the primary motivation in his life" (p. 121), a motivation he called "the will to meaning" (p. 121). In the existential sense, then, meaninglessness contains a paradox, captured succinctly by Yalom (1980) in the following question: "How does a being who needs meaning find meaning in a universe that has no meaning?" (p. 423). By pointing to the necessity of meaning in human life and the contingent and meaningless nature of the universe, the question illuminates an ultimate dilemma that human beings face.

For the HIV infected long-term survivor, there are numerous contingencies in life that confront him with meaninglessness. Inevitably he must create meaning out of his experiences, many of which are absurd. He is compelled, as Yalom (1980) proposed, by a need for coherence that provides a pattern of surety and momentum forward in life. May (1950/1977) argued accordingly that "when the individual both realizes the threat of meaninglessness and takes a stand against the threat [by creating meaning]-the result is a strengthening of the individual's experience of himself as a being who is distinct from the world of nonbeing or objects" (p. 16).

In the case of the long-term survivor, this stand against the threat begins when he poses questions such as, Why me? What is the meaning of my physical suffering? Why did I survive when so many died? And since I am alive, what do I do with my life? These deeply personal questions can only be wrestled with and answered with a degree of uncertainty by the individual who is asking them. Schwartzberg's (1993) phenomenological study of HIV infected gay men, however, sheds light on some of the meanings attributed to AIDS. Schwartzberg interviewed 19 participants and distilled 10 distinct categories of meaning from the interview data. These included: (a) HIV as catalyst for personal growth, (b) HIV as belonging, (c) HIV as irreparable loss, (d) HIV as punishment, (e) HIV as a contamination of one's self, (f) HIV as a strategy, (g) HIV as a catalyst for spiritual growth, (h) HIV as isolation, (i) HIV as confirmation of one's powerlessness, and (j) HIV as relief. The first three categories ranked highest and were reported by 74% of participants. That such a broad spectrum of meanings was revealed in this study points to the fact that the search for meaning in an otherwise meaningless universe is only a personal endeavor.

But how does the individual create meaning from absurd circumstances? The existential approach uses the concept of awareness (Bugental, 1965) as a method of meaning-making. As Bugental explained,

Because we know our own being, because we see our own impacts on that which is around us, because we can reflect on what we experience, human living is torn from the un-self-consciousness of objects or plant and animal existence. (p. 232)

As a result of awareness and the capacity for reflection contained therein, the HIV infected individual is capable of looking inward and affirming that in his life which brings him meaning-or, better still, that in his life out of which he cultivates meaning, even if in very small ways. As one patient remarked, "I find meaning in the flowers blooming in my garden."

Greening (2003) echoed Bugental (1995) when he asserted that a creative response to meaninglessness is "Enjoyment and effective use of consciousness...'Willing suspension of disbelief.' Openness to meaning and belief systems. Receptivity and curiosity...Ability to choose and affirm and act upon provisional data and theories, while remaining open to feedback and revision" (p. 3). Accordingly, the long-term survivor moves through life guided by awareness of wishes, wants, hopes, and dreams in spite of the uncontrollable and often painful obstacles that living with HIV presents.

Death and Finitude

Arguably the most pressing of the givens, death is at the heart of many of concerns held by people living with HIV/AIDS. Death is implicit in the other givens as they are manifested in HIV disease. For example, the given of embodiedness is shaped by the truth that one day, the body will cease to function, either as a result of an AIDS-related condition or some other cause; the given of isolation brings to the fore that every individual faces disease and death alone; and the given of meaninglessness is rooted in death as the long-term survivor struggles to make meaning in his life of the numerous losses he has experienced.

Yalom (1980) held that "death whirs continuously beneath the membrane of life and exerts a vast influence upon experience and conduct" while standing as a "primordial source of anxiety" (p. 29). May (1958) held that human beings, aware of their impending death, are shaped by their response to it. Bugental (1965, 1995), on the other hand, proposed that death is one aspect of the given of finitude, or the limited nature of awareness and, by extension, existence. Bugental (1965) described finitude in the following, albeit circuitous way:

...I am aware but, being aware, know that there is much more of which I might be aware and that that unknown more certainly can and does affect that of which I am aware...Thus is born the sense of being subject to fate, which in its ultimate form is the anticipation of death. (p. 36)

Both death and the finite nature of existence are readily apparent to the long-term survivor; however, attributions of meaning to contingency and the limitations posed by HIV vary, as illustrated above in Schwartzberg's (1993) research. Some participants viewed HIV as a confirmation of their powerlessness against greater, uncontrollable forces. These forces might include unpredictable symptoms, stigmatizing attitudes in the larger culture, limited financial resources, and the inevitability of death. Yalom (1980) held that such reactions to death and its attendant manifestations are both normal and neurotic, depending on the circumstances. In the event that anxiety associated with finitude and death becomes excessive and pervades all domains of experience, it is labeled neurotic. Yalom provided an excellent explanation of why it is that some individuals experience such reactions: "the individual, because of a series of unusual life experiences, is both unduly traumatized by death anxiety and fails to erect the "normal" defenses against existential anxiety" (p. 207). For some long-term survivors of HIV who witnessed the epidemic since its earliest days, life has been marked by an onslaught of unusual and traumatizing experiences, making them vulnerable to more neurotic forms of death anxiety. For these individuals, an authentic confrontation with the threat of non-being is arrested; the requisite defenses to confront death have been overwhelmed by previous experiences (e.g. multiple losses) or current vulnerabilities (e.g., drug use or unresolved and complicated grief). These experiences have deeply impacted the quality of the long-term survivor's life and, as Yalom stated, "death anxiety is inversely proportional to life satisfaction" (p. 207).

On the other hand, the majority of participants in Schwartzberg's (1993) study identified HIV as a catalyst for personal growth, which echoes the existential view. When death, the ultimate form of non-being, confronts the HIV infected individual, the possibility of authentic encounter occurs. May (1958) described this as follows:

To grasp what it means to exist, one needs to grasp the fact that he might not exist, that he treads at every moment on the sharp edge of possible annihilation and can never escape the fact that death will arrive at some unknown moment in the future...But with the confronting of non-being, existence takes on vitality and immediacy, and the individual experiences a heightened consciousness of himself, his world, and others around him. (pp. 47-48)

Fourteen of the 19 participants in Schwartzberg's study reported that in response to having a sense of limited time, they reprioritized their values and acted in a more grateful and forgiving manner, actions that illustrate May's point. Echoing the philosophy of Heidegger, Yalom (1980) summarized the idea: "although the physicality of death destroys man, the idea of death saves him" (p. 30). By this Yalom referred to the fact that for many individuals who have experienced a close encounter with death, life is subsequently experienced in a qualitatively different manner. In the case of many HIV infected individuals, awareness of finitude and ongoing acts of self-constitution is heightened-a way of being referred to in the existential tradition as the ontologic mode. In the following description of the creative response to death, Greening (2003) simultaneously described the ontologic way of being:

Celebration of life with all its phases and stages, knowing that they form a story with an end...Confrontation of death and physical being, living, as Don Juan in Casteneda's books tells us, with death over our left shoulder-not afraid or depressed, but aware and choosing life in the face of death. (p. 2)

This description aptly expresses the potential inherent in facing HIV disease in spite of the death that it represents. While HIV disease can lead to a heightened awareness of one's death, the loss of loved ones to the AIDS epidemic represents another form confrontation. No discussion of loss, however, is complete without addressing its inseparable companion: grief.

AIDS-Related Bereavement in Gay Men and Survivor Guilt

Features of AIDS-Related Bereavement in Gay Men

There are some distinctive features of AIDS-related bereavement, particularly when experienced by gay men. This section briefly reviews some of the research on these unique features, much of which was conducted at the height of the epidemic or shortly thereafter. While the research is outdated, it is still relevant as a reflection of the experiences of many alive today. The review is meant to provide a larger context for and appreciation of the experience of gay HIV infected long-term survivors and their existential circumstances.

AIDS-related bereavement is complicated for gay men for a variety of reasons. As Worden (2003) pointed out, there is a great deal of stigma associated with AIDS death. The four stigma-evoking characteristics of HIV/AIDS described above not only apply to infected persons, but are also extended to friends, family, and lovers in a form called courtesy stigma (Goffman, 1963). As Richmond and Ross (1994) found, bereaved survivors of the height of the AIDS epidemic, are stigmatized by their association with someone who died of AIDS and burdened by their marginalized and often unrecognized grief.

Another level of stigma that impacts the grief responses of AIDS-related bereaved gay men is that associated with gay identity. Sexual minority men are blamed for the AIDS epidemic by many in the United States, and while the etiology of AIDS is better understood today, this ignorance contributes to rejection of the gay community by the dominant culture (Springer & Lease, 2000). In their qualitative study on the experience of AIDS-related bereavement, Write and Coyle (1996) examined other particular aspects of this stigma. They found that participants often had to "come out" (i.e., disclose their gay identity) in order to enlist emotional support from others, leaving them to cope with mixed reactions both about the AIDS death of their loved one as well as the participant's sexual orientation. This made talking about the death of a loved one much more difficult than is the case with other causes of death. In this vein, Villa and Demmer (2005) explored how the mourning process of surviving partners is often not recognized because the relationship itself is not given the same credibility as a heterosexual relationship. This disenfranchisement of the grief of gay men adds a layer of difficulty that requires coping beyond the range of that required of heterosexual individuals, and often delays the bereavement process itself, increasing risk of complicated and chronic reactions. This is clearly the case when, as Campbell (1999) pointed out, partners are often denied hospital visitation rights, are not invited to the funeral by the deceased's family, or when partners are treated insensitively by hospital staff.

Traditional sources of support utilized by bereaved individuals are often unavailable to gay men who have lost a loved one to AIDS. Surviving partners are commonly estranged from their families after previously coming out, leaving them with no family support. Whereas the church is a source of tremendous support for some, widespread homophobic attitudes make it difficult for gay men to seek spiritual guidance and comfort. In a time when it is most needed, an affirmation of their inherent goodness and a sense of community are denied by many churches because of homonegative teachings and values (O'Neill & Ritter, 1992).

Arguably the most impacting feature of AIDS-related bereavement for gay men is the multiple losses that often occur. Martin (1988) found a strong positive correlation between the number of AIDS death losses and the degree of psychological impact on survivors. Common experiences in the study were sleep disruption, intrusive thoughts, illicit and prescription drug use, emotional disturbances, demoralization, and suicidal ideation. Mallison's (1999) examination of the bereavement experiences of six HIV-negative gay men revealed themes of overwhelming loss of resources, community, connection with others, and sense of self. Participant interviews indicated that managing losses in so many domains required vacillation between acknowledging feelings of grief and suppressing them, in some cases by using illicit drugs or increasing sexual contacts. While these results reflect the experience of HIV-negative individuals, the status of the bereaved is secondary to the shared experiences of loss among both HIV-positive and negative individuals. Nord (1996) observed that when individuals are unable to cope with the sheer quantity of multiple losses, traumatization often occur in survivors. These bereaved gay men suffer from chronic, posttraumatic stress disorder-like symptoms including numbing, flashbacks, nightmares, emotional outbursts, and substance abuse. In these cases, the volume of deaths instills a sense of helplessness common to trauma victims, and this lack of control is only crystallized by physically grotesque images of infected loved ones before death. Finally, Biller and Rice (1990) suggested that multiple losses inhibit bereaved individuals from moving towards acceptance because progress through stages of grief is disrupted by new deaths. Often this leaves grieving gay men vacillating between stages, unable to reach resolution about any of the losses.

According to Springer and Lease (2000), feelings of helplessness and shame fueled by the experience of multiple losses likely increase sexual risk activity in gay men. This assertion was supported in one study (Mayne, Acree, Chesney, Folkman, 1998) that found in the months following the loss of a partner to AIDS, participants' incidences of unprotected sex increased for varying lengths of time before returning to the maintained baseline prior to the death. Martin and Dean (1993) suggested that increased unprotected sex may be compounded by the use of illicit drugs, including amphetamine, methamphetamine, and barbiturates. For the HIV infected individual, increased incidences of unprotected sex pose a serious threat to one's health. Sexually transmitted infections can result in serious damage to the immune system in immune-compromised individuals. Further, the risk of infecting seronegative partners is greatest during unprotected sex.

Lastly, survivor guilt is another unique feature of AIDS-related bereavement that many gay men face. According to Odets (1994) feelings of guilt about outliving partners and friends are fundamental to the psychological distress that many long-term survivors face. He held that survivor guilt is especially destructive because it creates barriers to working through the underlying pain of the loss. Caught up in guilt, some are unable to delve deep into the feelings surrounding the death and progress forward toward acceptance.

Survivor Guilt and Existential Guilt

The concept of survival guilt emerged after World War II as psychologists began treating survivors of the Holocaust (Schmolling, 1984). Since, the term has been used to refer to varied symptoms experienced by individuals who have lived through events that claimed the lives of others (Bartone & Wright, 1990). Common symptoms include depressed mood, agitation, difficulty with concentration, reduced interest and lack of pleasure, difficulty forming and maintaining relationships, suicidal ideation, difficulties with sleep, reduced appetite, and feelings of worthlessness and guilt (Glover, 1984). O'Connor, Berry, Weiss, Bush, and Sampson (1997) proposed that survivor guilt occurs when the individual believes that the good in his life is experienced at the expense of those who did not survive. The resulting sense of being undeserving leads to what some researchers have identified as an unconscious self-punishing motivation (Johnston, 1995; Odets, 1995).

This conceptualization of guilt as resulting from an imagined offense against others matches what Yalom (1980) referred to as neurotic guilt. When the long-term survivor lives on, the transgression he commits is his own existence. As mentioned above, in many instances the individual feels guilty when good things happen in his life because at the back of his mind the question is always present: Why am I here to experience this when so many others are not? Such questions haunt the individual and as Johnston (1995) and Odets (1995) noted, he begins to constrict his life, often unbeknownst to him, minimizing his engagement with the world and blocking his own potentiality, perhaps to punish himself for outliving the deceased. Thus an imagined offense against others (i.e., the deceased) becomes a real offense against oneself. Yalom saw this "transgression against oneself" (p. 277) as the root of existential guilt, or the guilt of not fulfilling one's true potential.

The traditional view of survivor guilt, which places great emphasis on having outlived the deceased, misses an important characteristic of the survivor himself: he exists. Existence comes with authorship in one's life despite what has occurred, and the responsibility of authorship is daunting to many long-term survivors. Thousands diagnosed with HIV in the late 1980s and early 1990s did not expect to live beyond 1993. As one patient put it, "In 1990 I was told I'd be dead by '92. What the hell am I doing here? It's 2008." For these individuals planning for their future was much more anxiety-provoking than planning their funeral. A sudden sense of responsibility was upon them, and taken together with feelings of unresolved grief, the new possibility of life was, and is today, a mixed blessing. If not embraced whole-heartedly and fully experienced, this possibility amounts to nothing more than the source of existential guilt.


Since the beginning of the epidemic, HIV/AIDS has been the most devastating source of existential anxiety for the gay community. For those who were also infected during the height of the epidemic or shortly thereafter but outlived partners and friends, HIV infection is a constant reminder of the unimaginable death sustained by a group that prides itself on life. Now HIV disease is a fact of existence that shapes the lives of those long-term survivors who, everyday, face the harsh realities posed by the givens of existence, realities that have been described, albeit not exhaustively, in these pages.

For the long-term survivor, experience of the givens is colored by the specifics of managing a chronic illness in the face of unpleasant symptoms and side-effects, enduring isolation and stigma, seemingly meaningless suffering, numerous losses, and the guilt of surviving. Understanding these challenges in their existential context reminds therapists who works with long-term survivors that the client's existence is at stake and that in order to claim his existence as his own, the client must appreciate the profound nature of his challenges and work transcend them in the best way he knows how. Great challenges require great effort and courage which, as Bugental (1965) described, "consists in the exercising of our choice and the taking of our responsibility while recognizing that contingency can overthrow our decision and reverse our best efforts" (p. 26).

• NOTE: A revised version of this paper is forthcoming in the Journal of Humanistic Psychology, 2011.

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