Kent L Sandstrom. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.

During the past three decades, a growing number of studies have examined the challenges confronted by people diagnosed with life-threatening or potentially life-threatening illnesses. Many of these studies have focused on the psychosocial issues encountered by the terminally ill. In the process, they have revealed that some of the most troubling issues confronted by dying individuals include fears of social isolation and rejection; feelings of guilt, shame, anger, and grief; radical role changes; loss of future expectations and hopes; denial of death; and adjustment to physical and emotional devastation (Baider 1972; Furstenberg and Olson 1984; Oberfield 1984; Samarel 1995; Stulberg and Buckingham 1990; Stulberg and Smith 1988; Vachon 1998). Other studies, building on the observations of Elisabeth Kübler-Ross (1969, 1981), have highlighted the stages of adaptation the terminally ill usually pass through as they grapple with such issues. These stages include numbness and disbelief, denial and isolation, anger and resentment, bargaining, depression, and planning for the reality of death (Morin and Batchelor 1984; Moynihan, Christ, and Silver 1990; Nichols 1985).

In identifying these stages, researchers have attempted to formulate models that can be applied to the experiences of all severely or terminally ill people, often with the goal of helping these individuals and the clinicians who care for them. Kübler-Ross was clearly guided by these aims in developing her theory of the dying process. Inspired by conversations with more than 200 dying individuals, she crafted this theory not only to help terminally ill people understand their coping reactions but also to allow clinicians to recognize these reactions and intervene positively, particularly by assisting the dying in progressing toward a state of hopeful acceptance.

Although Kübler-Ross’s model has been useful to clinicians and dying patients, a variety of studies have revealed its flaws and limitations (Corr 1993; Corr and Corr 2000; Fox 1981; Hennezel 1989; Kastenbaum 1985; Weisman and Warden 1975). For example, empirical tests have demonstrated that this model mistakenly suggests that dying people move through sequential stages of coping when, in fact, they usually experience cyclical and vacillating processes of adjustment and adaptation, moving back and forth among responses such as denial, anger, and acceptance (Kastenbaum 1998). Studies have also shown that those dying may experience several of the “stages” identified by Kübler-Ross simultaneously. Moreover, researchers have reported that a number of dying people never go beyond the first two stages of adaptation identified by Kübler-Ross, and many feel apathy, apprehension, and anticipation as well as acceptance of death when they reach the final days of their lives (Weisman and Kastenbaum 1968). In some cases, the dying may also respond to their impending mortality with rage, guilt, fear, uncertainty, disbelief, dissonance, struggle, stoicism, or surrender (Shneidman 1984; Yedidia and MacGregor 2001).

Given the limitations of Kübler-Ross’s model (as well as similar stage-based approaches), researchers have formulated alternative theories of how people cope with dying and death. For instance, Kenneth Doka has devised an approach that applies the principles of human development to the end of life. Guided by these principles, Doka (1997) focuses on the dimensions of social, psychological, and spiritual growth that can arise for dying individuals. Doka also seeks to isolate and identify “the commonalities of human experience that emerge at the end of life, including the universal needs and opportunities that people confront as they die” (Yedidia and MacGregor 2001:808). In pursuing these aims, Doka follows in the footsteps of Kübler-Ross, striving to develop a broadly generalizable model that is useful to both clinicians and the dying.

In a related vein, Charles Corr (1995) has formulated a theory that emphasizes the universal tasks individuals must grapple with as they come to terms with death and dying. According to Corr, these tasks present themselves in four key areas: the physical, the psychological, the social, and the spiritual. Corr proposes that in the physical area, dying individuals must concern themselves with meeting their bodily needs (e.g., nutrition, hydration, elimination, obtaining shelter) and minimizing their pain or physical distress. In the psychological realm, they must grapple with the challenges of maintaining a sense of security, autonomy, and richness. To feel secure, dying persons must remain as free as possible from anxiety and fear. To feel autonomous, they must sustain a sense of control over their lives and key decisions. To preserve a sense of richness and vitality, they must have access to activities that allow them to feel satisfied or bountiful. In the third key area of task work, the social domain, dying individuals face a couple of major challenges. The first is to sustain and enhance the social relationships they value, and the second is to address the demands of surrounding social groups and organizations, such as families, clubs, churches, and governmental entities. Finally, in the fourth area of task work, the spiritual realm, dying individuals must grapple with the challenge of maintaining a sense of integrity or wholeness. They must also find a way to sustain a sense of hope.

In highlighting these areas of task work involved in coping with dying, Corr (1995) emphasizes that coping is an active process that consists of “efforts to manage what occurs in one’s life to achieve a livable balance insofar as it is possible” (p. 309). He also stresses that coping with dying is not merely a phenomenon that arises at the end of an individual’s life; rather, it is a process that encompasses all of a person’s life. It is also a process engaged in by all of the significant others who are drawn into the person’s experience of dying.

Corr’s task-based model of dying has several advantages. First, it avoids making claims that people go through stages of adaptation or that the dying process has a linear character. Second, it offers a holistic picture of how people cope with dying, considering not only their emotional states or psychosocial responses but also other important dimensions of their lives. Third, it has both universal and specific applications. It applies broadly to all individuals by focusing on the four primary areas of death-related task work. At the same time, it applies uniquely to each individual by focusing on the specific tasks that a person faces in coping with dying and how he or she addresses them. Fourth, the model recognizes the coping engaged in by all the people involved in a particular dying experience, including not only the dying person but also his or her friends, family members, and caregivers. In addition, it regards dying individuals as active agents who determine which tasks are important to them and how, when, or whether they will address these tasks. Finally, Corr’s model offers guidance to helpers and caregivers as they interact with the dying person. It proposes that they should be attuned to the tasks that the dying individual chooses to address and should focus their efforts on how to best help him or her in the completion of these tasks.

Despite offering several advantages, Corr’s framework shares a significant shortcoming with many other “psychosocial” theories of the dying process; that is, it fails to recognize or discuss some of the most important forms of identity work engaged in by individuals as they come to terms with death and dying. More specifically, Corr’s model fails to consider how and why many dying individuals alter their goals for self and fashion new, valued, and enduring identities—identities that enable them to sustain a sense of vitality, efficacy, and continuity in the face of death.

In an effort to address this gap in Corr’s model and the literature on dying, I focus the remainder of this chapter on the identity work that persons living with AIDS (PLWAs) engage in during the final phases of their illness career. Drawing on in-depth interviews with 31 PLWAs, I describe how they (a) build or rebuild vital and valued selves; (b) counteract the threats posed by debilitation, suffering, and dying; and (c) fashion and solidify identities that extend beyond death.

In exploring these themes, I highlight some of the most prominent identity-related challenges encountered by individuals grappling with life-threatening or potentially life-threatening health complications. I also consider the trials and transitions that shape the self-images and identity constructions of persons with AIDS, particularly as they come to grips with the threat of death. Finally, I examine how persons with AIDS fashion postmortal identities and sustain a sense of symbolic continuity as they enter the last stages of their lives. Through focusing on this dimension of identity work, I reveal how people with terminal illnesses construct enduring selves and futures that enable them to gain a measure of control and transcendence over death as an ultimate limit.

Reshaping Identity and Preserving Vitality In the Face of Death

After receiving an HIV diagnosis, individuals typically wrestle with issues of stigma and uncertainty (Sandstrom 1990, 1996; Weitz 1989, 1991). They worry about how, whether, or when to share the news of their health status with others and how to address the threat of devaluation it poses. They also worry about the unpredictable aspects of their HIV infection, such as when it might provoke serious symptoms, what symptoms or complications might emerge, what treatments will be available, and how both the symptoms and treatments will alter their lives and selves (Sandstrom 1998).

As their illness unfolds and its physical and social implications become more clear, persons with HIV/AIDS find that their concerns start to change. For many, the threat of stigma wanes, especially if they establish or solidify relationships with supportive networks of others. Most also discover that their struggles with uncertainty diminish. In fact, they begin to feel far more concerned about the certainties that accompany their health status—certainties such as the onset of problematic symptoms, the disruption of comfortable routines, and the shortening of their life span.

Sustaining a Vital and Valued Self

As they come to terms with the disruptions and losses provoked by their health condition, persons with AIDS, like others diagnosed with potentially terminal illnesses, reconfigure their lives and selves and search for ways to preserve a sense of vitality and self-worth. In the process, they utilize various strategies of identity work. One of these strategies is compartmentalization. When compartmentalizing their illness, persons with AIDS acknowledge its presence in their lives but downplay its salience for self, as Barbara (all interviewees’ names are pseudonyms) revealed when describing how she incorporated her AIDS diagnosis into her self-conception:

I don’t really think about being a person with AIDS, or having AIDS, on a day-to-day basis … I think of AIDS as being part of who I am but not as something that’s at the top of my list of identities. Instead, it would be pretty much toward the bottom. I’ll admit that I wear my “person with AIDS” button at times, like when I do educational talks at schools, but on a day-to-day basis I’m more likely to think of myself as other things—like a friend, a caring person, or a nurse.

Through compartmentalizing their diagnosis, persons with AIDS keep it at the margins of self and maintain a life beyond it. They find it difficult, however, to continue employing this strategy when serious health problems arise and impose constraints on their valued involvements or interactions. Under these circumstances, minimizing the salience of the illness requires them to stake their cherished images of self in the past. This, in turn, evokes an “emotionally divided self” (Denzin 1984), especially as they try to come to terms with the incongruity between their past images of self and a self currently immersed in illness. Greg touched on these themes when he remarked:

I find myself adjusting to, like, who I am now as opposed to who I used to be. You know, like I used to be a guy who was involved with all this stuff and a leader in the community, and so on. And now I’m not. I don’t have the energy to do that anymore. So now I almost think of myself as like a couple of different selves—and this, being sick with AIDS, is an other self.

Given the difficulties that can arise in compartmentalizing their illness, PLWAs often employ a second form of identity work: embracement. When engaging in embracement, they build or sustain a valued self by highlighting the unexpected “blessings” that have resulted from their illness (Sandstrom 1990). For example, some individuals emphasize how their diagnosis has motivated them to make positive changes in self. As Carrie observed:

I feel like AIDS has been sort of a blessing because, well, it’s helped me to grow a lot as a person. I’ve come out of my shell emotionally and I’ve grown a lot spiritually. I mean, it’s ironic but because of AIDS I’ve learned how to enjoy life and enjoy people … It’s been a very positive experience for me. I just feel so much better about myself now. You know, I’ve come to acceptance with AIDS and with who I am. Before becoming infected, I had no self-esteem, you know, and now I’m okay with who I am. I can relate to other people in a more genuine way. I don’t have to try to pretend to be somebody else or to make somebody else happy. I can just be my own person.

Others point out that their illness has been a gift because it has shown them how much their partners, friends, or family members care about them. Still others stress how their illness has been a blessing because it has led them to reflect more deeply on the meaning of their lives and to clarify their goals and priorities. For instance, when discussing the effects of his diagnosis, Curtis said:

I think it has forced some changes. I think I’ve become a little more focused about things on a daily basis and less apt to waste my time with unnecessary anger, you know. And I just think that I’ve eliminated, uh, a lot of things that I don’t need to deal with. It’s helped me to set priorities, you know. I’m better able to sort out what’s really important and what isn’t. I think that I’ve changed in that respect.

Another way in which persons with AIDS highlight the benefits of their illness and preserve a sense of selfworth is by reexamining the significance of previously cherished involvements, such as their sexual involvements (Weitz 1991). As their illness unfolds and triggers health complications, many PLWAs experience declines in sexual interest and activity. In turn, they place greater emphasis on nonsexual interactions and relationships (Sandstrom 1996). Thus, rather than assessing their value or attractiveness in terms of their erotic activities or involvements, they accentuate the new and deeper forms of intimacy and self-worth they can realize through nonsexual friendships.

In addition to relying on embracement, persons with AIDS frequently sustain or rebuild valued selves by engaging in strategies of empowerment (Kayal 1993; Sandstrom 1990, 2000). One of the more common ways they do this is by participating in AIDS-related education or advocacy efforts. Through speaking at schools or churches, facilitating support groups for persons living with HIV, serving as volunteers in AIDS service organizations, or engaging in lobbying efforts, they challenge stigmatizing constructions of HIV/AIDS and assert their right to define what it means to be a person living with the disease. They also derive feelings of efficacy from their related accomplishments in the “war against AIDS and AIDS-related stigma.”

Finally, those individuals who have lived with AIDS for a decade or more may gain a sense of empowerment and self-value from being “long-term survivors.” On one level, they can derive feelings of pride and accomplishment from having endured the trials and tribulations of life with AIDS. On another level, they can bask in the recognition and admiration they receive from others because of their ongoing survival. Yet long-term survivors also discover that their persistence in the face of AIDS poses threats to self. As they outlive friends or acquaintances with the illness, they wrestle with troublesome feelings of “survivor guilt” (Lifton 1967). As Jay noted:

You know, you watch others die and you can’t help but think, “Why am I still alive?” I mean, I try to say, “God just has a different plan for all of us, and it’s my plan to be here.” But it’s hard to get around that—the survivor guilt. It does pop up a lot and I can’t help but say to myself, “Why did that person die, but not me?”

In addressing this question and resolving their related feelings, long-term survivors often attribute their longevity (and others’ deaths) to fate or other uncontrollable factors. For example, Neil remarked:

I feel proud of the fact that I’ve survived but I feel that it was still totally beyond my control anyway. I don’t think that people who died sooner, you know, did anything wrong. Mostly I don’t think it has anything to do with what they did or didn’t do. It’s just because, you know, they got something and they died. Um, so I see it [survival] as something people don’t have a whole lot of control over. And I see myself as just being lucky.

Through adopting such an outlook, long-term survivors can alleviate feelings of survivor guilt and protect themselves from accepting too much responsibility for their unfolding health situation.

Coming to Terms With Serious Illness, Suffering, and Dying

As their illness unfolds and provokes symptoms such as chronic pain, nausea, fatigue, neurological problems, and opportunistic infections, PLWAs are confronted with bodily evidence that challenges their visions of themselves as vital and healthy persons and, correspondingly, deters them from using identity work strategies that highlight the beneficial aspects of their illness experience. As a result, they often turn to other adaptive strategies that allow them to sustain a sense of control, vitality, and self-value.

One of these adaptations is to become more absorbed in the present and avoid thoughts of the long-term implications of their health problems. Through recasting their visions of the future and living more fully in the moment, persons with AIDS derive a greater sense of control and find new sources of personal satisfaction and fulfillment. Many start to see and appreciate “the little things” happening around them each day, thereby anchoring themselves in what Charmaz (1991) describes as an intense present. In the process, they discover a revitalizing sense of joy and transcendence, as Ryan conveyed: