Vitality and growth in HIV-infected gay men

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Sm. Sci. Med. Vol. 38. No. 4, pp. 593-602, 1994 Copyright0 1994 Ei&r ScienceLtd Printedin Great Britain.All rinhtsreserved 0277-9536/94-$6.00 + 0.00

Pergamon

VITALITY

AND

GROWTH

IN HIV-INFECTED

GAY

MEN*

STEVEN S. SCHWARTZBERG

Adult Outpatient

Clinic, Harvard

Medical School, McLean Hospital, MA 02178, U.S.A.

115 Mill Street, Belmont,

Abstract-The emphasis in the psychosocial literature on Human Immunodeficiency Virus (HIV) has been placed, correctly, on the traumatic impact of AIDS in terms of mortality, bereavement, suicide, psychopathology, and coping with life amid enormous multiple stressors. However, an important aspect of the HIV epidemic has been paid only minimal attention: many HIV-positive gay men have experienced beneficial, or even life-transforming, aspects of their situation. Seven HIV-positive gay men are described here who have successfully integrated HIV into a framework of world- and self-beliefs that allows for coherence, stability, emotional vitality, and positive self-regard. Eight general characteristics of these men are presented. These men represent-a subgroup from a sample of 19 subjects in a qualitative clinical interview study exploring how HIV-positive gay men ascribe meaning to AIDS and their own HIV infection [I]. _ _ Key words--HIV,

AIDS, meaning, resilience

As of June 1992,226,281 adult Americans have been diagnosed with Acquired Immune Deficiency Syndrome (AIDS); additional millions of people worldwide are estimated to be infected with Human Immunodeficiency Virus (HIV) [2]. Given that 7-10 yr typically elapse between the time of infection with HIV and the first onset of symptoms [3], HIV has thus resulted in an enormous population of individuals who are currently asymptomatic or mildly debilitated, but who are nonetheless harboring a virus of lethal and immedicable potency. In Western cultures, the psychological impact of AIDS has been most profoundly felt in urban gay male communities. Although AIDS affects many communities and individuals, gay men continue to bear the brunt of the epidemic in America and Europe: more than 60% of the diagnosed American cases have been among gay men, with a concomitantly high number of HIV-positive individuals [2]. HIV-positive gay men must not only inescapably grapple with profound questions regarding mortality, but many must do so while simultaneously grieving multiple close AIDS-related losses. For gay men, AIDS can be considered a ‘massive death experience’ [4]; gay men, individually and communally, are engaged in a continual, cumulative, and inexorable process of loss and bereavement [5,6]. Yet against this bleak backdrop-or, paradoxically, because of it-many HIV-positive individuals have been able to forge beneficial, rewarding, and, in some cases, life-transforming meaning out of their situation. For example, Viney et al. [7], using a structured interview, report the intriguing datum that *This research was partially funded by a grant-in-aid of research from Sigma Xi, The Scientific Research Society.

a group of HIV-positive gay men indicated higher levels of ‘life enjoyment’ than did either healthy controls or a group of men with various other illnesses (see also Hamera and Shontz [8] for a similar report on life enjoyment among the ill). Viney et al. [7, p. 1591 conclude that “the expression of enjoyment is the result of effective coping with illness . . (rather than) defense”. Similarly, findings by King [9] and from the Multicenter AIDS Cohort Study [lo, 1 l] suggest the effectiveness with which many HIV-positive gay men are coping with life in an AIDS-immersed subculture [ 10, p. 5731:

. . a substantial percentage of the men in this [MACS] cohort experience clinically significant emotional impairment. Yet, at the same time, it is striking to find that the vast majority have managed to maintain relatively normal emotional functioning despite the danger, loss and uncertainty which the AIDS epidemic entails. In a first-person account, Callen [12] emphasizes the profound changes AIDS has triggered in his ascription of meaning to life. Callen is an AIDS activist and a ‘long-term survivor’, first diagnosed with an HIV-related infection in 1982. He likens AIDS to “a cosmic kick in the ass-a challenge to fina/ry start living” [12, p. 21: While I would never have wished for AIDS, the plain truth is that I’m happier now than I’ve ever been . . . AIDS has taught me the preciousness of life and the healing power of love. I’ve been more productive than at any time prior. . . . I’ve tried to see AIDS as a challenge to begin living, instead of a sign to begin dying. AIDS forced me to take responsibility for my own life-for the choices I had made and the choices I could still make. For better or worse, AIDS has made me the man I am today. Solomon et al. [13] examine the psychoimmunological aspects of mental health in an HIV-positive 593

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population, deriving their work in part from the ‘hardiness’ model of Kobasa [14]. They offer 16 hypotheses related to longevity among persons with AIDS, including: the importance of a sense of meaningfulness and purpose in life; the ability to find new meaning as a result of the disease itself; being altruistically involved with other people with AIDS; and “acceptance of the reality of the diagnosis, with refusal to perceive the condition as a death sentence” [ 13, p. 65 11. O’Leary [ 151 reports that most of the data are inconclusive or not yet ready for analysis or publication, and warns that others’ attempts to find a causal relationship between HIV and psychoimmunologic functioning have yielded disappointing results. Nonetheless, the work of this group may provide important empirical data regarding AIDS, longevity, and the importance of forging meaning out of crisis. In brief, while the emphasis in the psychological literature has been placed, correctly, on the traumatic impact of AIDS in terms of mortality, bereavement, suicide, psychopathology, and coping with life amid enormous multiple stressors, an important aspect of the HIV epidemic has been paid only minimal attention: many HIV-positive gay men have experienced beneficial, or even life-transforming, aspects of their situation. This should not be surprising: while there is a sense of discomfort, or even taboo, discussing the beneficial aspects of a traumatic situation [16], it has often been noted that within adversity lie the seeds of potential growth, mastery, empowerment, and personal transformation [8, 17-191. Between November 1990 and April 1991, this author conducted a phenomenological clinical interview study with 19 HIV-positive gay men [I]. Three questions guided the research: (I) How, if at all, have HIV-positive gay men found meaning in, or made sense of, AIDS? (2) What are the strategies HIV-positive gay men have developed to maintain or reconstitute the belief in a meaningful world, even as external reality has been so dramatically altered? (3) How has AIDS affected beliefs about such issues as fate, religion, death, the meaning or purpose of life, and the degree to which people control their own destiny? The study had broad theoretical underpinnings in the humanist-existentialist psychological literature on the sequelae of ‘massive death’ experiences [4, 17,201. A basic thread running through this literature is the need for survivors to establish some meaning or purpose in the profoundly disrupting events they have experienced. For example, Lifton [4] has described the experiences of survivors of several atrocities and natural disasters, ranging from the Hiroshima bombings to a flood that devastated a rural community in 1972. Common among survivors’ reactions, regardless of the specific nature of the adversity they had experienced, was the struggle to ascribe some meaning to the traumatizing event.

Similarly, a cognitive perspective on trauma highlights the potential effect of adversity to shatter an individual’s belief in a meaningful world. In particular, Assumptive World theory [18] holds that the ability to forge (or re-forge) meaning out of adversity is crucial for optimal functioning in a traumatic situation. Janoff-Bulman [18] argues that the primary disruption of trauma-be it rape, severe illness, personal assault, debilitating accident or natural disaster-is the disrupting event’s potential to destroy or nullify the implicit beliefs that had previously guided the traumatized person’s life. Above and beyond these theoretical underpinnings, however, this investigation was grounded in phenomenological research principles of exploration and description [21-231. Rather than attempting to fit data into a priori assumptions or hypotheses, the researcher’s stance was one of ‘empathic neutrality’ [23], which involved attempting to hold in abeyance preconceived notions and expectations, and allowing the data to emerge and take shape in as unbiased a manner as possible. A fuller description of the research methodology is reported elsewhere [I]. Each subject was interviewed once. with the interviews following a semi-structured format and typically lasting between 2 and 3 hr. Of the 19 participants, a majority (74%, or n = 14) identified at least some beneficial aspect of their situation. Among these, seven subjects in particular spoke in terms suggesting that their HIV infection had been a positive, or even transformative, experience in their lives. This subgroup of subjects were coping well: they were unhindered by undo depression or anxiety, they had maintained satisfying work and/or interpersonal relationships, and they actively attended to their health in terms of diet and physical fitness. Further, they indicated ways in which they had successfully been able to reascribe meaning to life in the context of their HIV infection, and had integrated HIV into a new framework of world- and self-beliefs that allowed for coherence, stability, emotional vitality. and positive self-regard. In a typology offered in the larger study regarding subjects’ ability to forge meaning out of HIV [I], these men constituted the ‘high meaning’ subgroup. The focus of this article is to present eight common themes that characterized this subgroup of seven subjects. These themes are discussed as guidelines and commonalities, rather than fixed or necessary attributes. Further, the themes are not intended as behavioral prescriptions: the data from this study are phenomenological, and should be understood as descriptive rather than prescriptive. The subjects frequently spoke with eloquence, passion and wisdom regarding how HIV and AIDS had altered the course of their life’s journey. Because the data are culled from transcribed clinical interviews, the participants’ exact words are used liberally to capture the specific flavor and gist of their experience.

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Table I

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Brief descriptions

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of the men

Anthony: 39 yr old, Anthony holds a Masters degree in Library Sciences and works as a librarian. He has known of his status since January 1982-longer than any of the other men in the study, and prior to the actual discovery of HIV. Despite the large number of friends he has lost, and occasional health impairments, he continues to live a full life, including a new relationship. Alcoholics Anonymous (AA) philosophy and Roman Catholicism are central to his worldview. Eugene: a 46 yr old ‘community organizer’, Eugene has led an unconventional, somewhat bohemian life, pursuing various artistic endeavors and working as a grassroots political organizer for different progressive causes. His positive test result, 45 months earlier, had come as a great shock. Eugene uses activity as a primary way of coping with HIV: he is extremely involved in his city’s social and community politics regarding HIV and AIDS. Kyle: a 45 yr old former high-school teacher, Kyle is currently employed in an AIDS service organization. He has known about his status since his lover, Frank, was diagnosed and died in 1985. Frank was Kyle’s first male lover; he had been married for many years, and has one teenage daughter. Despite his report of occasional debilities, Kyle radiates a sense of health. HIV has initiated tremendous growth in his life. Leon: a 35 yr old physician, Leon’s ‘whole world just fell apart’ when he learned he was positive 2 yr prior to the study-weeks before his graduation from medical school. Living for many years with his partner (who is HIV-negative), Leon had not had high risk sex since 1981. For Leon, living with HIV has been a profound, bittersweet experience: he has come to ‘treasure life, and in particular an ever-strengthening love and commitment in his relationship. But he is also painfully fearful of imminent loss. He believes HIV has made him a more compassionate doctor. Lacas: at 40, Lucas is a minister and therapist who holds a doctorate in counseling. After learning he was positive 2 yr prior to the study, he was tremendously relieved to learn he had not transmitted HIV to his lover of I5 yr: Lucas had contracted the virus in one of his regular clandestine visits to a gay bathhouse. Bolstered by his strong religious beliefs, keen intellect, and his lover’s support, Lucas is actively struggling to use his HIV infection as a catalyst for a fuller life. Stan: a 48 yr old bank clerk who tested HIV-positive I8 months prior to the study, Stan had suspected he was positive for a while before. A recent bout of pancreatitis, triggered by ddC (an experimental anti-viral drug) had resulted in weight loss and hospitalization. A quiet man who had never had an intimate relationship or acknowledged his homosexuality to friends, co-workers or family, HIV has initiated a sense of openness and belonging to the gay community he had never felt before. Roberto: at 27 one of the youngest men in the study, Roberto was also the most robustly optimistic. He had a glib, likeable interpersonal manner, and his enthusiasm about how HIV had made him more appreciative of life suggested a deep belief in the power of positive thinking. Roberto saw HIV as yet one more challenging life obstacle to overcome, dating back to his childhood with an abusive, alcoholic father who abandoned the family in his early teens. Roberto had known he was positive for I8 months. He had experienced no health impairments, no AIDS-related bereavements, and had had no contact with ocoule with AIDS.

SUBJECTS

Subjects in the larger study were 19 HIV-positive gay men. Potential subjects who had known for < 18 months that they were HIV-positive were excluded from the study, as were subjects who met diagnostic criteria for AIDS, as defined by the Centers for Disease Control [24]. Nine subjects had never experienced any HIV-related health impairment, six had experienced minor symptoms, and four had experienced more pronounced difficulties, including weight loss and continual fatigue. Sixteen were white, two African-American and one Latino. They ranged in age from 27 to 50 yr old, with a median age of 40 and a mean age of 39. They had known about their HIV-status for between 18 and 106* months (median: 34 months; mean: 41 months). Most were economically stable; one was an SSI recipient. The men were well educated: seven had a postgraduate degree; an additional seven had graduated from college, and four of the remaining five had some college education. All lived in urban settings with well established gay communities. *Some subjects knew of their immune disorder prior to the actual discovery of HIV. One subject, for example, had his t-cell abnormalities confirmed in January 1982, early in the epidemic, after participating in a study in New York City of gay men with generalized lymphadenopathy.

Subjects were recruited by three methods: word of mouth (n = 6); a flyer describing the study distributed in meeting places for gay and/or HIV-positive men (n = 10); and a brief solicitation for participants offered by the researcher at a community lecture on HIV-issues in Boston, MA (n = 3). The seven men reported here did not differ from the larger n in any noteworthy characteristics. They ranged in age from 27 to 48, and had known of their HIV status for between 18 and 106* months. Correlational analyses in the larger sample indicated no significant relationship between age or length of time since confirmation of an HIV-positive diagnosis and inclusion in the ‘High Meaning’ classification. Table 1 offers brief clinical vignettes of each of the men discussed here. All names, and certain particulars of identifying characteristics, have been altered to protect confidentiality.

THE EIGHT (I)

CHARACTERISTICS

Belief in personal control or free will

Of fundamental importance to these men was the notion that people have choice or free will in ascribing meaning to their fate. Given the undeniable and irreversible fact of their HIV infection, these men had come to believe that what they did with this information, how they made use of it, was within their

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internal locus of control. This attitude was exemplified by Kyle, a 45 yr old man who had known he was HIV-positive since 1985: I know that I’m not getting away from this. It’s here, inside, and how I choose to deal with it is key I’ve never had a very strong sense that I could get rid of this [HIV], heal myself that way, but I do have a strong sense that I can heal myself spiritually and emotionally. Kyle’s opinion was not unusual; Anthony said, “It’s up to me to accept what’s happening in my life or not”, and Roberto, the most robustly optimistic of the lot, said several times, “I think it’s all how you look at it”. Lucas saw his HIV infection as a Job-like challenge from God, undesired but seeded with the potential to “use it in some way that’s redeeming”. This appraisal of HIV as something ambiguous and interpretable allowed for a sense of agency and control in the men: it was possible to view HIV in a variety of ways, and up to them to make the most of their situation. (2) The ability to admit the reality of HIV infection and AIDS, but also to maintain the capacity to see AIDS as an abstraction Even as these men believed that the power and responsibility to shape the meaning of their HIV infection was within their control, none denied the reality of his infection. Yet in addition to this acceptance, most of them also indicated ways in which they maintained a capacity to view AIDS as an abstraction, and thus distance themselves from an immersion into panic, dread, or depression regarding illness and death. This was not to say that they were inflexibly locked into a dysfunctional denial; for the most part, they were able to address their fears and concerns, and the majority thought it quite likely that they would eventually develop AIDS. However, they spoke in ways that indicated that they also had some means of psychological escape from AIDS concerns: [Roberto]: HIV has added a whole new dimension

to my life. If I could assure the outcome, I think I actually could embrace it. If I could know that, ‘Hey, you know what? This is going to turn out okay, I’m going to be all right, they’re going to come out with a way to maintain this permanently’, then 1 would feel, ‘Wow, HIV is really basically a good thing’.

One subject, Leon. was a resident in internal medicine in a large metropolitan hospital. A great deal of his work involved people with AIDS, particularly those in the end stages of the disease. When he began his medical residency in 1989, he had only known about his own HIV infection for a few months. The work proved exceedingly difficult. With distressingly vivid recall, he spoke about his first day of residency at the hospital: In my first group of patients was an AIDS patient who was my age, at the end of his life, completely conscious of what was going on, and dying one of the more unpleasant deaths that people with HIV disease die of-not that any of them are pleasant, but he had a bleeding disorder, a platelet

disorder, and was bleeding from every orifice of his body. He knew he was dying. He was lying there, terrified, telling me how frightened he was. His eyes were wide open, he didn’t want to die. This was in the first group of patients I saw, and I flipped out.

Leon’s sense of identification with this man, and his overwhelming anxiety at learning that many of his patients would be people with AIDS, were too strong for him. After two more days, he reneged on his residency and found other medically-related work. One year later, in 1990, he began the program again. During the intervening year, as a result of his own continual struggles to integrate HIV into his life, he had developed the necessary distance to resume working. In fact, after returning to his residency, Leon began to derive a sense of gratification, and meaning, from his particular sensitivity to, and acumen with, AIDS patients. To accomplish this transformation, Leon developed strategies to subvert his identification with his patients. He did so primarily by means of dissociation and rationalization: I’ve managed to put a distance between me and them in that situation, because I don’t think of myself as being that sick. I think of myself as infected, and I think of an HIV sick person as being sick, so I’ve managed to put a distance in that sense. That enables me to go on. and deal with it. Leon added that what also allowed him to work was a symbolic, and deeply ironic, gesture: the donning of rubber gloves. I still feel funny about the medical practice of wearing rubber gloves, because you can’t get AIDS from touching someone. It bothers me, but on the other hand it enables me to keep that detachment. Thus, most of the men took at least partial refuge in a creative and protective use of denial to view AIDS as an abstraction. Yet two subjects demonstrated a diametrically opposite strategy, vigilantly refusing themselves any false hope that AIDS did not pertain to them. For Kyle and Anthony, remembering the harsh, undeniable reality of HIV and AIDS seemed a necessary constancy in order to maintain the growth they had achieved. Kyle personified HIV as a ‘stern teacher’ and commented that he’d “gotten as close to the HIV beast as possible”. Regarding the possibility of his own death, he expressed both fear and a commitment to meet it head on, to confront it and learn from it: I’ve never been particularly afraid of death and dying. I don’t think I would commit suicide, although I would reserve for myself the right to do so. But I think there’s so much in a spiritual dimension to be experienced by death and disintegration and letting go that I’m kind of more interested in that than in ending pain. But it will be very hard for me to confront a real disability. I’m very active, and hideously vain, and it would be hard for me to accept lesions, and having to spend a long time in bed. I’m going to have to work real hard to let go.

Similarly, when Anthony spoke of the inevitability of his developing AIDS, he neither shied away from, nor obsessively focused on, frank talk about death. In

Vitality

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the same manner that characterized his entire interview-a quick intellect infused with, but not overpowered by, emotional vitality-he addressed the topic bluntly: I can’t say, through most of this process, that I thought much about death other than to be afraid of it. It’s only in the past 2 yr, when my t-cells began to drop, that I’ve given serious consideration to the fact that I’m going to get sick and die soon, probably.. . So in the past 2 yr, death has come a lot closer. I’m trying to confront it and face it head on.. I’d like to put myself around it physically more, because you see how death is just shunted aside in so many ways. It happens in hospitals, you don’t see it, physically you don’t have to confront it+f course, I also think I’d like to have barbiturates on hand, so I could cheat. (3) HIV as an agent that confers ‘specialness’ For several of the men, HIV was not only something to be tolerated, but something that yielded an unexpected reward through the difficult struggle of accepting its impact. The process of coming to terms with being HIV-positive unleashed, or re-awakened, traits, talents or strengths that had hitherto been dormant. In other words, as may happen with coping with other adversities, HIV became a developmental trigger to discover internal resources that had never previously been put to the test. Leon’s particular sense of gratification at being a good ‘AIDS doctor’ is an example: “I know I’m a hell of a lot better at dealing with AIDS patients than almost any of my fellow house staff, and most of the attending doctors”. He had come not only to tolerate his HIV infection in a new framework of meaning, but to view it as the key to unlocking something ‘special’ within himself: his unique compassion, and ability, as an AIDS doctor. This theme of specialness was echoed by Kyle, for whom HIV became the one ‘stern teacher’ he couldn’t ‘charm away’, and Roberto, who felt that he grew enormously because of the ‘challenge of HIV’.

(4) A sense of community belonging or membership Each of these men spoke of ways in which their HIV infection had increased a sense of membership or belonging to a wider community. For some of these men, the community was closely circumscribed and clearly delineated, perhaps a specific circle of friends and/or family members. For most, however, the strengthened community affiliation had to do with the gay community in general, or a community of HIV-positive individuals in particular. HIV was a dramatic catalyst for several participants to strengthen their communal identities as gay men. They spoke, often with passion, of feeling proud of the gay community’s accomplishments in facing AIDS. Several acknowledged their own heightened awareness of gay political issues and discrimination, and spoke of their newfound tolerance for diversity within the subculture of gay men. Many felt a deepening sense of pride in being gay. Such sentiments were exemplified by Anthony, who felt both a

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unique kinship with other HIV-positive men and a heightened affirmation of his identity as a gay man: One of the most positive experiences of my life recently has been my Body Positive group [an HIV-positive support group]. Ten gay men who are HIV positive-two with AIDS, others with other problems, others just HIV and doing pretty well, and we all look very much forward to getting together. We have a camaraderie and bonding which is unique in my life, wonderful and really supportive. There’s an easiness in that room, and a liking of each other, which is really loving. There’s going to be a lot of positive stuff that comes out of this. Gay people can now say ‘We’ as a people in a way that we couldn’t before this happened. I think we’ve responded to it. For me, the meaning of AIDS is going to be a lot of maturity on the part of the gay community. We’re going to be healthier as a community than we were before. We’re going to be more concerned about each other, and taking our lives as gay people more seriously.

Kyle depicted his sense of community as an important tainer of, his grief over AIDS recent funeral for a friend he

belonging to the gay vehicle for, and conlosses. He spoke of a had attended:

That was a real grieving experience

for me, a wonderful opportunity to just let go. I cried and cried and cried, I cried like there was no end to it. There was a collectiveness about it. I looked around and I knew just about everybody who was there, and I knew a lot of them to bc infected themselves. A lot of families were there, and so it plugged me in at a lot of levels: there was the gay family, there was the nuclear family, kids, beautiful flowers, exquisite music, everything.

For some of the men, this sense of belonging extended beyond family and friends, beyond the HIV community and gay community, beyond the limited membership of any particular religious sect. Some had derived, from their own HIV infection, a sense of kinship with humanity, or a sense of inseparably belonging to a chain of humanity perpetuated across the world, through the ages. For example, Eugene spoke emotionally of the importance to him of a community of HIV-positive men; as he spoke, this sense of belonging led seamlessly into a sense of greater connection to people in a larger, less bounded group identity: I wouldn’t be able to survive without Positive Directions (an HIV-positive support group]. It’s empowering: the brotherhood, the camaraderie, the sharing, what we reinforce for one another. It’s like people with any kind of cause, or struggle-there’s a lot to be gained in the struggle itself, and sharing it. I get teary sometimes. I can get this sense of being in an army of sorts, of people that are trying to defeat a disease, and also the prejudice, and the discrimination and all the stuff that goes along with it. And hopefully, down the line there will be some sort of universal insurance out of this, national health, and so there are a lot of things to be achieved.

The men varied in how public they were about their HIV infection. All were ‘out’ as HIV-positive to some family members or close friends, but most had made careful, specific decisions regarding with whom they wished to share the information. Only two subjects, Kyle and Eugene, were unabashedly public about

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their infection. Eugene spoke of the value, for him, of being widely identified as HIV-positive: It’s very important that people come out as being positive whenever circumstances will allow, or whenever they have the guts, or whenever it’s important to them. I don’t want to downplay my involvement [in the AIDS movement]. I want it to flow, and I don’t want the feeling that I have to hold back on something I don’t feel responsible for, or that it means anything negatively about me personally. I shouldn’t apply the standards any differently than if I had leukemia or cancer.. (5) A ‘here and now’ focus Each of these men discussed ways in which their awareness or appreciation of time had changed, and many said that they had developed a much more ‘here and now’ focus. For some men in the larger sample, the awareness of having a foreshortened life or diminished future was primarily a mournful occurrence; for the men reported here, however, the necessary shifting of one’s estimated lifespan became more an impetus to accomplish goals, or partake in activities, that would have otherwise been delayed. Leon’s words captured this attitude: This is it, you know, moment to moment, and trying to enjoy it, every moment. I’m not always successful, but I feel-not quite a pressure, but a strong sense that this is the only time we have, not next week, but now. Get everything you can out of living: do what you want to do, enjoy it. This feels like a positive thing, not a desperate thing-trying to treasure what’s happening right now. a 40 yr old man for whom a religious calling had always shaped his life, had worked as a minister in a suburban, predominantly heterosexual parish. His decision to leave that parish, and focus instead on pastoral counseling with a gay and lesbian clientele. was directly related to his HIV-infection. For him, too, HIV had led to a change in how he thought about time: Lucas,

I’m much more aware of time passing, how I spend time, and taking time for myself to let myself live. I’ve always been so scheduled and on a timetable, pushing hard-that’s been the story of my life. HIV has introduced the other side, which is take time to enjoy this moment, this day, don’t push so hard doing all these things you don’t want to be doing.

He added that he’s developed time as embodied in nature:

a new appreciation

for

I’m much more aware of seasons. I like being outdoors, and sometimes I think it’s weird, here I am, 40 yr old and just now realizing strawberries are here in the first 2 weeks of June. (6)

The belief in some sort qf‘afterlife

Another characteristic shared by many of these men was some sort of belief in an afterlife. Most commonly, these beliefs were vaguely defined: rather than a specific concept of heaven or reincarnation, these men believed there was something, some spiritual plane, that followed this existence. For several men, these afterlife beliefs were one aspect of a re-invigorated, or newly discovered, general sense of spirituality, either in the context of organized religion

or a more individual pursuit. Yet even the men who had not gone through a more generalized spiritual awakening still apparently received solace from contemplating a death that was not absolutely finite. Theologists may be more suited than psychologists to comment upon afterlife beliefs; however, from an existential perspective, such beliefs can be seen to lessen the profound loss, fear, and mystery that characterize the serious contemplation of one’s own death. Often, as part of a usual grieving process, bereaved individuals will develop cognitive strategies that serve to keep the deceased person ‘alive’ [25]. These include the belief in an afterlife; internalizing aspects of the deceased person; identifying with the deceased person; dedicating one’s actions or accomplishments to the deceased; and engaging in behaviors, such as visiting a cemetery, lighting memorial candles, or perhaps writing or talking to the deceased, that maintain a relationship with the person, Interestingly, many individuals, when queried about afterlife beliefs, state that they choose to believe in an afterlife because of the comfort and relief it brings. Similarly, these subjects’ afterlife beliefs can be understood, at least in part, as soothing. unconscious fantasies about, or strivings for, immortality. Perhaps guided by less mysterious or ephemeral needs, the men engaged in behaviors and/or fantasies that addressed a wish that a piece of themselves would remain ‘alive’ after their death. This could be seen, for example, in how they spoke of the benefits of gay communal identification and pride: these bonds transcended the limits of a specific friendship, or a specific time, and inseparably joined them with a cultural ethos that would be perpetuated beyond their death. For example, Kyle’s HIV infection had led him to a much more spiritually-oriented worldview. as well as to employment in an AIDS service organization. For the past several years, he had counseled individuals taking the HIV-antibody test and run short-term groups for people who had recently tested HIVpositive. He derived enormous value from his work with these individuals, who were coping with the first shock and crisis of learning about their infection: Early on, I saw myself as an instrument: I’ve survived. there’s something that I can help other people with here. This is my way of integrating what’s happened to me, as well as integrating myself into a larger community.. At my most arrogant, in these groups that I lead, it’s almost like I’m an initiator, or an elder for these men who have just learned they’re positive. It’s a wonderful feeling and I watch myself carefully so I don’t abuse it, but I think. this is a rite of passage and I’m their initiator in a way. I’m one of the first people they see who’s made some personal meaning out of being HIV positive, and that’s my wish for them. that they make their own meaning out of it. In the work that I do, I feel a sense of real connectedness with those men. Although Kyle does not speak specifically in terms of immortality, his sense of deep gratification as the

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in HIV-infected gay men

‘initiator’ of these men into ‘ a rite of passage’ reveals his belief that some part of him is being passed on, and thus kept alive, in other individuals. For Anthony, a sense of afterlife or immortality was inseparably intertwined with his individual and communal identity as a gay man. In a haunting image, one redolent with notions of gay belonging, immortality, and spirituality, he spoke of his fantasy for after his death: I’ve heard, and this might be my fantasy, that at the cathedral at St John of the Divine, the crucifix that dominates the apse is a columbarium, a relic or container of ashes of the dead. I’ve heard that it’s mostly a container of ashes of people who have died of AIDS, and I love the idea that if I die, that my ashes could go there and be part of that cross with other gay people. I like the idea of being buried with other victims of this epidemic. I don’t want us to be forgotten as individuals or as a community who went through some spectacular suffering. (7) AItruistic behavior

Several of the men in this group indicated ways in altruistic behavior or activity had become a basic component of their lives. Eugene’s commitment to battling social inequities, Kyle’s devotion to assisting less experienced HIV-positive men, and Leon’s special attention to AIDS patients all involve altruism. Similarly, Lucas, the minister, reflected on how his HIV infection had made him more compassionate and more able to empathize with the plight of others: “It’s helped a great deal in my ability to enter people’s places of pain and brokenness”. The altruistic behavior of these men was specifically tied to enhanced self-esteem, and became an important mechanism to forge meaning or purpose out of their situation. Such a response to adversity is not unique to HIV infection: for example, altruism has been associated with psychological well-being among Holocaust survivors [26], and is a strategy by which trauma survivors frequently attempt to find meaning in their plight [18]. This can be seen, for example, in how bereaved or traumatized individuals may become involved in work or causes related to the specific illness or traumatic event that affected them. Vaillant [27] identifies altruism as a ‘mature’ adaptive coping mechanism, a productive and resilient way to counter a serious psychological threat. (8) The ability to tolerate paradoxical, or contradictory, thoughts, beliefs and feelings As a final characteristic, these men were able to tolerate, or embrace, a paradoxical combination of beliefs and responses towards HIV and AIDS. They saw their HIV infection, and AIDS’ impact in the gay community, both as a catalyst for significant personal growth and an agent of irreparable, massive loss. They were engaged in processes of both personal expansion and a premature shutting down, given the likelihood of a far-diminished lifespan. They accepted the uncertainty and ambiguity of their situation and

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could tolerate the anxiety of holding contradictory meanings or beliefs. For Leon, the physician, HIV was both a catalyst for personal growth and a harbinger of incomprehensible loss. He was living what he felt was a richer, more focused life, with a newfound ability to ‘treasure’ his relationship with his partner of 11 yr. But a sense of loss was equally profound as his growth, voiced in his fears of death and his resentment at the timing of his positive test result: Leon grew up in an alcoholic, abusive family. At 19, he attempted suicide. At 23, he joined AA to overcome his own alcohol and multi-drug addiction. The following year, he began taking courses at a community college. After the financial and emotional ‘ordeal’ of putting himself through ten straight years of education, he found out he was HIV-positive 3 days before his 34th birthday-and 3 weeks before his graduation from medical school. Lucas, the minister, captured the paradoxical and tenuous balance between HIV-initiated growth and loss, sharing both his own sense of development and his rage at those who see such growth in a naive and global manner: There have definitely been positive aspects, but it would be too easy, too simple to say ‘Oh yeah, there’s a lot of good things about HIV’. I can’t do that: there are good things about it, but first I have to acknowledge how horrible it is, how bad it is, and how much I wish it wasn’t in the world, not only just in me.. . I get very irritated when I hear simplistic ‘feelings’ that are very positive about it-‘It’s wonderful, HIV is just wonderful in my life’. I want to slap those people around. Fuck you, it’s positive: it’s also horrible! Half the universe is getting thrown away there, let’s acknowledge that other half, how shitty it is, how horrible it is, how bad it is. So with that said, yes, there’s a lot of good things that happened.. DISCUSSION

Faced with the incontrovertible fact of their HIV infection, these seven men had transformed this information from despair to challenge, from psychological disequilibrium to catalyst for growth, from a ‘death sentence’ to a reinvigorated appreciation of life. They gave evidence of responding to HIV in a manner that highlighted a sense of personal development in the face of adversity, while nonetheless remaining cognizant of the factual reality of their situation. Several characteristics typified these men, as just elaborated. In brief, they felt it was within their power and locus of control to shape the meaning of their own HIV infection. They felt a sense of kinship, of communal identification, with other gay and/or HIV-positive men. Their appreciation of the passage of time had resulted in a more ‘here and now’ focus. For the most part, they assumed it was likely that they would develop AIDS, but still maintained the capacity to distance themselves from AIDS and see it as an abstraction. For some, HIV was not only something to be accepted, but inherently a thing of value-an agent that conferred specialness. Many

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behaved in altruistic ways. Most believed in an afterlife, or indicated an unconscious belief in, or striving for, immortality. And several were able to tolerate the paradox, and the tension, of a range of contradictory beliefs regarding HIV and AIDS. None of the men demonstrated all of these themes, and no prominent characteristics definitively or exclusively provided ‘necessary and sufficient’ criteria for inclusion in this group from amid the larger sample. For example, while perhaps the most robust commonality among these subjects was a belief in persona1 choice or free will, other men in the study also believed this, but had nonetheless been unable to convert this belief into a beneficial foundation for growth. Similarly, these seven men differed from one another in some important ways, including the amount of AIDS-related bereavement they had experienced; their level of contact with people with AIDS; their own health; and pre-AIDS experiences with hardship or adversity. Several of these men had not experienced any close losses, and had had only minimal contact with ill individuals. However, Kyle had lost his first lover, Anthony had experienced the deaths of over 20 men he knew, and Lucas had not only lost several close friends, but had officiated at their, and other AIDS-related, funerals. Further, while many of these men were in generally good health, Stan had been hospitalized with a near lethal bout of pancreatitis, incurred as a reaction to ddC, and Anthony, who had known of his immune deficiency since 1981, had a bleak t-cell count of 57. And while many had never faced life situations as stressful as their current infection, Leon and Roberto had grown up in alcoholic. abusive households, and Kyle had been sexually victimized as a pre-adolescent. In other words. this was not a homogeneous lot, in terms of current health, developmental history, or direct interpersonal contact with AIDS. However, what these men did have in common was the ability to integrate their HIV infection into a framework of meaning that provided positive self-worth and a coherent model for understanding reality. Although a phenomenological research methodology of course precludes drawing any causal hypotheses, it is interesting to speculate why these men were able to transform their HIV infection into beneficial growth, while other men-some of whom were physically healthier and more distant from AIDS losses--were not. Three these

possible

men

factors

demonstrated

come

to mind.

a capacity

First, for

each

of

cognitive

*Regarding this latter point, Vaillant [27] distinguishes between the defense mechanisms of repression and suppression. He argues that suppression, which includes the ability to contemplate anxiety-provoking material without being incapacitated by it, is a higher-level defense than repression, in which anxiety-provoking material is kept out of conscious awareness.

flexibility. They could allow new information into their world and self views, and let go of beliefs or ideals that were either no longer viable or held too rigidly. This flexibility was exemplified in the ability to tolerate the paradox of HIV-related growth and loss, the belief in free will, and the ability to acknowledge AIDS’ impact but also see it as an abstraction.* Second, these men had a basic coping stance of activity rather than passivity. They sought out volunteer opportunities or HIV-related work, they sought out community affiliation, and they actively engaged in an internal examination of living with HIV. Lazarus and his colleagues [28. 291 distinguish between two types of coping: problem-focused, which predominates when behavioral intervention will make a difference, and emotion-focused. which predominates when it will not. For Lazarus, each type of coping requires activity and initiative. The men described here engaged in both styles of coping, making behavioral interventions when appropriate (e.g. with diet, rest, and medical attention), and engaging in emotion-focused coping to deal with the unalterable aspects of their situation. Third, as described earlier, each of these men found a community in which they felt a sense of kinship and membership. Along with the belief in free will, this was the only characteristic that all the men shared. In the interviews, they spoke of their communal ties with other gay and/or HIV-positive individuals in passionate and heartfelt terms; often, this was the most rich and evocative material they discussed. The literature on the benefit of social support is vast (see [18] for a review), and the ability to establish meaningful interpersonal relationships forms the bedrock of several theories of clinical psychology [30-32). It may be that meaningful contact with others-having a place to share one’s fears, needs, experiences. and accomplishments-is vital in the transformation of adversity to growth. The ability to forge meaning out of HIV and AIDS typically followed a developmental path; each of the men described a time earlier in their infection chardcterized by depression, anxiety. and loss. For Anthony, a pivotal turnabout came with joining AA; for Stan, it was working up the courage to attend a Positive Directions meeting-his first-ever community event with other gay men. While it was clearly not the case that subjects’ abilities to ascribe meaning to their lot fit into easily demarcated stages (see [33], alternatively, for a stage mode1 approach to gay mens’ coping with HIV), the challenge of finding meaning in adversity can nonetheless be understood as an ongoing, developmental, and fluid process. The eight characteristics presented here have much in common with the hypotheses offered by Solomon et al. [13] regarding longevity among people with AIDS, as well as capturing the spirit of revitalization and personal growth described in the first-person account by Callen [12] and the several ‘long-term

Vitality

601

and growth in HIV-infected gay men

survivors’ he interviews. Additionally, the ability to extract, from profound adversity, the courage for personal growth is the central theme presented by Frank1 [17]. In his powerful account of life amid the dehumanizing horrors of the Nazi concentration camps, Frank1 quotes Neitzche to encapsulate his thesis [17, p.891: “Was mich nicht umbringt, macht mich starker” (That which does not kill me makes me stronger). Given this study’s small sample size, phenomenological orientation, and self-selection among subjects, caution is warranted in generalizing the results to too broad a population. Further, despite the heterogeneity of the men discussed here, the subjects also bore several fundamental similarities: most were white, educated, high-functioning, middle-class individuals. As such, this study cannot address such issues as the prevalence among HIV-positive gay men of these characteristics, the potential health benefits of such an orientation, or how individuals in poor, minority, or greatly disenfranchized communities may subscribe to the same beliefs. However, these limitations do not alter the primary aim of this paper, which is to describe commonalities among gay men who have successfully integrated HIV into a coherent and growth-oriented framework for ascribing meaning to life. In addition, despite numerous methodological problems [34], the vast majority of HIV psychosocial research [e.g. 5, 10-l l] has by necessity relied on objective measures to determine overall trends and patterns; in-depth, qualitative analyses of individual lives have been much less broadly represented in the literature [35, 361. The existence of individuals who have been able to forge life-transforming benefit out of HIV infectionregardless of the prevalence with which they are found, or the complex factors that contribute to such an orientation-is a testament to the resilience and durability of the human spirit in meeting profound adversity. Learning more about this population is apt to prove illuminating and beneficial in understanding the manifold ways in which people adapt, or succumb, to trauma. SUMMARY

Of 19 subjects who participated in a clinical interview study regarding the ability of HIV-positive gay men to ascribe meaning to HIV and AIDS [1], seven stood out as having successfully integrated their infection into a viable and self-esteem enhancing framework of meaning. Of these, a few men in particular displayed a remarkable ability to integrate harsh reality, beneficial illusion, emotional vitality, wisdom, and humility. Eight common themes typified these men, which are offered here as descriptive, non-exhaustive characteristics. Speculatively, these eight themes may speak to deeper attributes of resilient individuals, including a capacity for cognitive flexibility, an active coping stance, and the ability to

form and sustain meaningful, supportive relationships. It is hoped that additional research will shed more light on this population, expanding our knowledge about coping with HIV in particular, and responses to adversity in general.

REFERENCES

1 Schwartzberg S. Struggling for meaning: how HIV-positive gay men make sense of AIDS. Profess. Psychol. In press. Centers for Disease Control HIV-AIDS SurveiIIance Report, 1992. Mills J. and Masur H. AIDS-related infections. Sci. Am. 263, 5&57, 1990. Lifton R. J. The concept of the survivor. Sumiuors, Victims, and Perpetrators: Essays on the Nazi Holocaust (Edited by Dimsdale J. E.). Hemisphere, Washington, D.C., 1980. consequences of AIDS-re5. Martin J. L. Psychological lated bereavement among gay men. J. consull. ciin. Psychol. 56, 856-862, 1988. S. AIDS-related bereavement among gay 6. Schwartzberg men: the inadequacy of current theories of grief. Psychotherapy 29, 422429, 1992. I. Viney L. L., Henry R., Walker B. M. and Crooks L. The emotional reactions of HIV antibody positive men. Br. J. med. Psychol. 62, 1533161, 1989. 8. Hamera E. K. and Shontz F. C. Perceived positive and negative effects of life threatening Illness. J. Psychosom. Res. 22, 419424, 1978. with 9. King M. B. Psychosocial status of 192 outpatients HIV infection and AIDS. Br. J. Psychiat. 154,237-242, 1989. 10. Kessler R. C., O’Brien K., Joseph J. G., Ostrow D. G., Phair J. P., Chmiel J. S., Wortman C. B. and Emmons C. Effects of HIV infection. perceived health and clinical status on a cohort at risk for AIDS. Sot. Sci. Med. 27, 569-578, 1988. 11. Ostrow D. G., Monjan A., Joseph J., VanRaden M., Fox R., Kingsley L., Dudley J. and Phair J. HIV-related symptoms and psychological functioning in a cohort of homosexual men. Am. J. Psychiat. 146, 737~742, 1989. 12. Callen M. Surviving AIDS. Harper Collins, New York, 1990. 13. Solomon G. F., Temoshok L., O’Leary A. and Zich J. An intensive psychoimmunologic study of long-surviving persons with AIDS: pilot work, background studies, hypotheses, and methods. Annals N.Y. &ad. Sci. 4%, 647655, 1987. S. C. Stressful life events, personality and 14. Kobasa health: An inquiry into hardiness. J. person. sot. Psychol. 37, l-11, 1979. 15. O’Leary A. Stress, emotion and human immune function. Psychol. Bull. 108, 363-382, 1990. 16. Parkes C. M. Bereavement as a psychosocial transition: Processes of adaptation to change. J. sot. Iss. 44, 5366, 1988. 17. Frank1 V. From Death Camp IO Existenrialism. Beacon Press, Boston, 194611959. 18. Janoff-Bulman R. Shattered Assumptions: Towards a New Psychology of Trauma. Free Press, New York, 1992. 19. Lipowski Z. J. Physical illness, the individual and the coping process. Inf. J. _psychiat. Med. 1. 91-102. 19704971. 20. Dimsdale J. E. The coping behavior of nazi concentration camp survivors. Survivors, Victims, and Perpetrators: Essays on The Nazi Holocaust (Edited by Dimsdale J. E.). Hemisphere, Washington, D.C., 1980.

602

STEVENS. SCHWARTZBERG

2 1. Polkinghorne D. E. Phenomenological research methods. In Existential-Phenomenological Perspectives in Psychology: Exploring the Breadth of Human Experience (Edited by Valle R. S. and Hailing S.). Plenum Press, New York, 1989. 22. Giorgi A. Phenomenology and Psychological Research. Duquesne University Press, Pittsburgh, 1985. 23. Patton M. Q. Qualitative Evaluation and Research Methods (2nd edn). Sage, Newbury Park, CA., 1990. 24. Centers for Disease Control. Revision of the case definition of acquired immunodeficiency syndrome for national reporting-United States. Morbid. Mortal. W&y Rep. 36, 15, 1987. 25. Schwartzberg S. and Halgin R. P. Treating grieving clients: the importance of cognitive change. Profess. Psychol.: Res. Pratt. 22, 240-246, 1991. 26. Kahana B., Hare1 A. and Kahana E. Predictors of psychological well-being among survivors of the Holocaust. Human Adaptation to Extreme Stress: From the Holocaust to Vietnam (Edited by Wilson J. P., Hare1 Z. and Kahana B.). Plenum Press, New York, 1988. 27. Vaillant G. E. Adaptation to Life. Little Brown, Boston, 1977. 28. Lazarus R. S. and Folkman S. Stress, Appraisal and Coping. Springer, New York, 1984.

29. Benner P., Roskies E. and Lazarus R. S. Stress and coping under extreme conditions. Survivors, Victims, and Perpetrators: Essays on the Nazi Holocaust (Edited by Dimsdale J. E.). Hemisphere, Washington, D.C., 1980. 30. Bowlby J. Attachment and Loss. Hogarth, London, 1969. 3 1. Fairbairn W. R. D. An Object Relations Theory of the Personality. Basic Books, New York, 1940/1952. 32. Jordan J. V.. Kaplan A. G., Baker-Miller J., Stiver 1. P. and Surrey J. L. Women’s Growth in Connection: Writ ingsfiom the Stone Center. Guilford, New York, 1991. 33. Ross M. W., Tebble W. and Viliunas D. Staging of psychological reactions to HIV infection in asymptomatic homosexual men. J. psychol. human Sexual. 2, 93-104, 1989. 34. Kaplan H. B. Methodological problems in the study of psychosocial influences on the AIDS process. Sot. Sci. Med. 29, 271-292, 1989. 35. Gordon J. and Schontz F. C. Living with the AIDS virus: a representative case. J. counsel. Dee. f&287-292, 1990. 36. Viney L. L. and Bouselield L. Narrative analysis: a method of psychological research for AIDS-affected people. Sot. Sri. Med. 32, 757 ~765, 1991.