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Themes of Suffering in Later Life

¹ Polisher Research Institute, Jenkintown, Pennsylvania.
² Department of Sociology and Anthropology and Doctoral Program in Gerontology, University of Maryland, Baltimore County.

Address correspondence to Helen K. Black, Thomas Jefferson University, Community Home Healthcare Research, 130 S. 9th Street, Suite 515, Philadelphia, PA 19107. E-mail: helen.black{at}Jefferson.edu

	Abstract

TOP Abstract Methods THEMES OF Suffering Discussion Appendix References

 
Objectives. This qualitative research study explored the personal meaning of suffering to a group of 40 community-dwelling elders, stratified by gender and race.

Methods. We recruited 40 informants who were 70 years old or older from the Philadelphia, PA, area for extended qualitative interviews, which elicited their life story and experiences and philosophies about suffering. Cells contained 10 African American men and women and 10 European American men and women each (N = 40). Through analysis of data, we placed elders' experiences of suffering under three general themes: suffering as lack of control, suffering as loss, and the value of suffering.

Results. Informants developed a unique definition, attribution, theory, and theodicy about suffering based on the particularity of the experience as well as how they "fit" suffering into their lives as a whole. Brief case studies illustrate how themes emerged in elders' stories of suffering.

Discussion. On the basis of this research, it appears that, although they have some similarities, elders' experiences of suffering are unique and incomparable. Similarities concern informants' connection of suffering with finitude. The incomparability of suffering experiences relate to informants' unique personal histories, perceptions, and "cause" of suffering. Through the process of the interview, elders connect the suffering experience to the entirety of the life lived and the story of suffering to the life story.

SUFFERING is a ubiquitous human experience but is not specifically the same as depression, grief, illness, pain, or similar events that occur in later life. Some elders explain that negative events, such as depression or suffering, differ from each other in their causes, outcomes, and quality. Although suffering can be defined from an etic perspective (as we do in the paragraphs that follow), this article focuses on how a sample of community-dwelling elders narrated their own suffering and what events precipitated it. We describe how individual experiences of suffering in later life can be organized thematically.

Factors that differentiate suffering from some of the events just named are that suffering affects the individual on many fronts, may reach the core of the self, and may consume the self. A trigger may be an event such as grief or illness, or a state of being such as poverty. Elders note that the enduring nature of suffering might overwhelm their aging minds and bodies; they worry that they will die before suffering ends.

Our goal in this article is to describe a significant aspect of the aging experience that is infrequently discussed. On the basis of our research, most individuals have experienced suffering. One of our informants noted that "suffering is a normal part of life." We also take up the theme of the deviancy of suffering, that is, that suffering is strange and "wrong" to the one who suffers. The fact that suffering is both familiar and alien touches on a component of suffering that waxed significant in our study—the paradox of suffering.

For purposes of discussion, we define the terms that are integral to and related in this article, such as culture, self, and suffering. Culture is our native starting point; it is the shared blueprint of both the local and larger world into which we are born and take part in shaping. Culture cannot be abstracted from a society's historical reality; interaction among members is central to inheriting and bequeathing a culture (Hall, 1959; Turner, 1996). The self may be defined as two complementary faculties: a process that is unfolding and an object that is observed (Charmaz, 1995). In this definition the self includes an abiding identity that is both actor and acted upon, watcher and watched, and subject and object of life experiences.

Suffering has been defined in medical, psychological, and religious idioms as "the state of severe distress associated with events that threaten the intactness of the person" (Cassell, 1982, p. 640); "a threat to our composure, our integrity, and the fulfillment of our intentions" (Reich, 1987, p. 117); and "as involving threats that constitute an alienation of our being" (van Hooft, 1998, p. 14). We offer these definitions because they speak to the all-encompassing nature of suffering as a threat to an integrated existence, which resonates with our informants' accounts of suffering.

The definition of suffering is connected to the culture in which it is defined, to the ethos of the society, and to the way an individual communicates suffering within that society (Scheper-Hughes & Lock, 1987). In other words, suffering is a unique form of social communication. As a lived experience, suffering is laden with social connotations and marked by symbols that are recognized and shared throughout the culture (Martin, 1987). Collective interpretations of suffering create its value as well as a rejection of its value (Graneheim, Lindah, & Kihlgren, 1997). Suffering may be named acceptable, unacceptable, a cultural exemplar, or even an "outrage" in a given society (McGoldrick, 1996; Rosen & Weltman, 1996; Townes, 1997; Zborowski, 1969).

Critical to the experience of suffering is the perception that common sense notions of life and living disappear. This is sometimes represented in informants' inability to narrate their suffering experience within the context of their life story; the flow of narrative may be interrupted at the point of suffering.

Background
Prior research on and around suffering has examined the experience from a variety of perspectives. There are several excellent studies that have explored the experiential problems of old age, such as decline, fear, illness, loneliness, and grief, and, through these experiences, suffering (Kaufman, 1980; Myerhoff, 1979, 1984). There are few studies, however, that specifically examine suffering in the aged-based way we discuss here. As noted, research suggests that the experience of suffering, although in some way universal, has a local meaning and varies from culture to culture (Kleinman, 1997). In America, suffering may be seen as a special property of the aged because of cultural myths about old age. The heightened incidence of chronic and acute disease, physical pain, depression, decline in mobility, more frequent loss, and nearness to death or finitude, although normative, may contribute to an overall sense that elders suffer. A psychological scenario of "time running out," being "passed by," or "past one's prime" is culturally connected to old age. The temporal and spatial characteristics of suffering speak to cultural notions of the self through time and the culturalized body whose value resides in notions of production and reproduction in American society (Cotton, 1999; Harrison, 1985; Martin, 1987; Ross & Wright, 1998; Scheper-Hughes & Lock, 1987; Sennett & Cobb, 1974). New roles or identities may seem closed off because elders perceive that there is too little time left to pursue them (Charmaz, 1995). Although many informants felt, in many ways, ageless, internalizing the cultural view of old age as unproductive caused suffering.

In the social sciences, the notion of "social suffering" has been introduced to examine "the devastating injuries that social forces can inflict on human experience" (Kleinman, 1997, p. ix). Recent work in anthropology has attended to the effects of broad cultural, economic, and political forces, often violent, that in different ways affect individuals' and groups' subjectivities and create suffering (Adelson, 2000; Bourdieu, 1993; Das, 1997, 2000; Das & Kleinman, 2001; DeMeis, 1999; Desjarlais & Kleinman, 1997; Estroff, 1984; Green, 1999; Kleinman, Das, & Lock, 1997; Morgan & Wilkinson, 2001; Scarry, 1985; Uehara, Morelli, & Abe-Kim, 2001). The emphasis here is on large-scale social and public structures that produce suffering in individuals. Some of these categories, such as poverty and racism, influenced the lives of the elders we studied. Their "intimate" or "private" suffering occurs in a social milieu and is judged as suffering within the ethos of the larger public world (Lipton & Marbach, 1984; Zborowski, 1969). Unfortunately, the literature here rarely is gerontological, although many of its issues, including the relation of social structures and social suffering to individual subjectivity, are important gerontologically.

When suffering is viewed from a health care perspective, some have suggested that the focus of clinical practice should be the treatment of human suffering in a general sense (Cassell, 1991; Cherny, 1996; Heath, 1989; Kleinman, 1988; Maeve, 1998; van Hooft, 1998), in contrast to treatment of specific parts of the body, disease symptoms, or organ systems. Here, the concern is for the fragmentation and decontextualization of the person through standard health care practices, which in effect separate person from meaningful context. The values expounded in this perspective are evidenced in gerontology itself, which increasingly calls for a more holistic treatment of the aged (Regnier, 1993). A similar sensibility is found in work that focuses on the whole self in end-of-life care, and on the efficacious treatment of emotional and physical pain in clinical and hospice settings (Kaufman, 2000; Kleinman, 1997; Lawton, 2000).

Generally, aspects of suffering have been treated in an event or disease-specific manner. A classic distinction in medical anthropology has been made between disease, a biological construct, and illness, or the victim's experience of the disease episode. This distinction certainly applies to suffering in which the "cause" may range from a major public trauma to a private and subtle experience; both may be subjectively experienced as suffering. Medical anthropology has pursued description and analysis of illnesses, focusing on the illness experience and on constructs such as "distress," "misfortune," "affliction," and similar terms (Godoy, Jacobson, & Wilkie, 1998; Kleinman, 1980, 1988; Lewin, 1979; Morse & Johnson, 1991, chap. 16, pp. 31–39). Work on native "explanatory models" and "exploratory maps" of illness experiences has been significant (Williams & Healy, 2001). Although this work is different from our concern with elders' suffering outside of patienthood, it is similar to our approach to the experience of suffering as common, unique, both observable and hidden, and complex.

Other work obtains here as well. Research on depression, illness, loss, poverty, racism, stress and trauma, and posttraumatic stress disorder suggests a continuing role of these events in shaping a life (Banyard, Williams, & Siegel, 2001; Bar-Tur & Levy-Shiff, 2000; Breslau, Davis, Peterson, & Schultz, 2000; Dasberg, 2001; Hyer & Sohnle, 2001; Ngo, Tranh, Gibbons, & Oliver, 2001; Simeon, Guralnik, Schmeidler, Sirof, & Knutelska, 2001; Weintraub & Ruskin, 1999). What is significant in these studies is that they focus on how individuals define, understand, and cope with the stressors they experience as part of both a personal and shared system of meaning (Becker, 1997).

We believe individual specificity in meaning is important. For example, we suggest that just as there are elders who are not ill and yet suffer, there are also elders who are ill and do not perceive themselves as suffering (Charmaz, 1995). Any generalization about suffering in later life fails to account for individual perception in suffering, elders' sense of accumulated sufferings, and the unique vantage in older age of the purpose or value of suffering to the life lived. Generalizations also fail to penetrate problematic emotions, such as guilt, regret, shame, or a failure to forgive or perceive oneself as forgiven that cause suffering in later life, especially if elders believe that they have no second chances to "right wrongs" done early in life. These subtleties of suffering indicate that it is an experience too complex for reduction to a simple explanation; too diffuse to be analyzed solely as a psychological or social event or cultural phenomenon; and too personally powerful to be absorbed by any standard paradigm or extant theodicy.

	METHODS

TOP Abstract Methods THEMES OF Suffering Discussion Appendix References

 
The overall goal of our research was to investigate some of the ways a sample of elderly persons defined, experienced, and discussed suffering. To that end, we recruited 40 research informants from the Philadelphia, PA, area for extended qualitative interviews. Informants aged 70 and older were included; the average age was 78. The sample was stratified by ethnicity (African American and European American) and by gender. Consequently, cells contained 10 African American men and women and 10 European American men and women each (N = 40). Informants were recruited through past research rosters of the Polisher Research Institute, as well as through requests to informants in ongoing research projects at the institute to suggest neighbors, friends, and fellow churchgoers or synagogue-goers for inclusion. In addition, to focus this study more sharply, we recruited for positive responders to this question: "Are you suffering now or have you ever suffered?" For this study only self-nominated sufferers were included. A final goal in recruiting respondents was diversity of experience (in regard to gender, ethnicity, education, religious affiliation, good or poor health as subjectively defined, and socioeconomic status) in relation to suffering. This variation regarding the aforementioned domains was easily accessed at a screening contact. Thus, the overall recruitment aim was to cast as wide a net as possible, to work with informants to develop their own definitions of suffering, and to engage the breadth of older individuals' meanings of suffering. Some of the core questions we asked in the interview are provided in the Appendix. Eligible and interested informants were interviewed either at the informant's home or, if the respondent preferred, at the office of H. Black. Private interviews lasted from 1 to 3 hr in one session. Sessions were tape-recorded with the permission of the respondent. They were transcribed into a PC text-base for analysis.

Data Analysis
We used narrative analysis, a specialized form of qualitative analysis, as the method of analyzing our data (Mischler, 1986; Polkinghorne, 1988; Reissman, 1997; Sarbin, 1986), as it follows Bruner's (1990) meaning of how protagonists interpret lived experiences, and Polkinghorne's (1988) assertion that, in narrative, the past is reconstructed in light of the narrator's present worldview, which in turn is shaped by past experiences such as suffering.

Narrative analysis was appropriate for our study because it concerns human agency and imagination and is suited to studies of subjectivity and the self. This method recognizes that "culture speaks itself through a particular actor with a particular story." That is, the narrator's current complexity and context cannot be separated from the story being told (Gergen & Gergen, 1989; Reissman, 1997). Narrative analysis acknowledges that definitions, descriptions, and interpretations of suffering are personally, culturally, historically, and socially contingent. A lived experience, such as suffering, is precisely such because an individual interpreted a negative event in a particular way at a singular point in place and time (Polkinghorne, 1988; Rosenwald & Ochberg, 1992).

Narrative analysis has been widely used in gerontology (Becker, 1997; Gubrium, 1993; Kaufman, 1986; Myerhoff, 1979, 1984). Excellent foci for this method are these: topics that have been scarcely researched, subjects about which little is known, and exploring the meaning of lived experiences, such as suffering in age and outside of patienthood.

Narrative analysis acknowledges that narrative is both a cultural and a personal representation or production that can be analyzed for both a surface structure—what the narrative says or does not say—and as a context-dependent structure, in which underlying themes or patterns emerge. There are many approaches to narrative analysis; the option chosen here is a step-by-step analysis of a segmented paragraph by one speaker with additional narrative and responses to prompts and follow-up questions posed by the interviewer. This approach retains the flow, flavor, and surface meanings of the story. It also permits an immediate paragraph-level analysis to orient readers to issues (e.g., the value of suffering) before the story moves on.

The audiotapes of private interview sessions were transcribed and checked for accuracy. Then we examined the texts of the interviews in order to locate materials about suffering. Content concerning suffering consisted of two categories: responses to direct questions about suffering and materials about suffering that occurred elsewhere in the interview, not in response to direct questions. When such materials were located, they were coded and annotated as to their content (the nature or type of suffering found). Each account of suffering was given an identifier, usually a key line from the text. Then we sorted the materials into general themes of suffering. Beginning with the initial interview, we discussed each text as to its nature and where it might belong among themes. This process went through several iterations before the final themes of suffering were named.

In most cases, the context, experience, and meaning of suffering were clearly described by informants. In some cases, for example, during analysis of data and creation of themes, interpretation by the authors was in order. The intention in interpretation is to describe, explain, and elaborate phenomena as related by the informant and based on the entire transcript (Stake, 1995).

It is important to note that we never defined the term suffering for informants. We felt that to initially define suffering might artificially shape informant discourse. Certainly, the term has personal and communal connotations for informants and elicits images that are both unique and culturally and religiously shared. Our goal was to elicit "folk models" or "explanatory models" of suffering. In order to acknowledge the uniqueness of each elder's definition of suffering, the conceptual framework of our research was based on a model of the person derived from work in cultural anthropology and gerontology (Rubinstein, 1989, 1992). This model sees the older person as the active constructor, interpreter, and creator of meaning of his or her smaller world and focuses on the personal meaning systems of older people as part of the larger system of cultural and social meaning.

	THEMES OF SUFFERING

TOP Abstract Methods THEMES OF Suffering Discussion Appendix References

 
Within respondents' narratives, we identified three overarching themes of suffering: (a) suffering as lack of control; (b) suffering as loss; and (3) the personal value of suffering. We describe each theme in the paragraphs that follow and cite examples that illustrate its content.

Suffering as Lack of Control
An overarching theme in elders' narratives was their experience of suffering as a lack of control over the self, one's body, or the circumstances of life. This theme's pervasiveness in elders' narratives reminds us that elders' suffering is experienced and expressed in the cultural context of American views about the self, specifically agency, activity, and productivity. The ill, dependent, frail, or grief-stricken elder offends the American conception of the person as strong, independent, and capable—or in control. An adult's ability to direct his or her comings and goings and to satisfy his or her needs remains a benchmark of maturity. Suffering challenges the management of the self. Most elders conclude that a measure of helplessness and dependency precedes death, although all hope that, for them, it will not.

An 85-year-old African American man described suffering as the helplessness he now feels as a result of failing health: "You go on and one day your realize how little control you have over life. And what that does, you say to yourself, before I go away, I'm going to get my backyard cleaned up. You know, be sure I'm on the right track with everybody and everything." Because he recognized how "little control" he has over the major issues of life, such as illness and death, his ever-diminishing area of control now circles his "own backyard."

A 75-year-old European American woman is homebound as a result of several debilitating illnesses, including arthritis, diabetes, heart disease, and ulcerative colitis. Her doctors recently labeled her condition as "terminal." Despite this label, she feels that she is no longer suffering. Although she cannot change her prognosis, she controls what is left of her life by changing her identity from a sick person to a dying one. She has told her family what she wants to wear for her "laying out," and how her gravestone should be marked. She feels joy contemplating an afterlife in which "everyone will be young and healthy." Unlike the gentleman just mentioned, this respondent widened her area of control to include the "heaven" that she believes will follow this life.

A 74-year-old European American man admitted that his suffering began after his parents died. The decisions he needed to make concerning his life, such as choosing friends, looking for a job, and whether or not to marry or own a home, overwhelmed him. He believes he will suffer until he finds "someone who will tell [him] the way to go." His inability to handle life's daily problems places him in an existential liminal space. He is both waiting for his life to begin and, because of his age and frail health, waiting for death. His suffering includes the sense that he is less than a "full person" because of his indecision. He believes he has fallen far short of the cultural myth that individuals, especially men of his cohort, who are dominant and decisive are most worthwhile.

Later life provides a vantage point for elders to compare the lack of control they feel over the present circumstances of their lives with age peers or with earlier times in life. A 91-year-old European American widow who suffers from crippling arthritis believes that "old age is suffering." As a former high school principal, she enjoyed the social and intellectual stimulation of peers and believed that meaning in life was based on achievement and growth. In the latter stage of her life she feels bereft; she is left with a self that shames her. She admits that she now "settles" for friends who have "little education" or are nonconversant about current events. She has "lost" her younger, vital self to an older disabled self. In her mind, she falls sadly short of the qualities that make up a worthwhile person—someone who can entertain, teach, travel—and control her own destiny.

A 72-year-old frail African American woman, when asked what a picture of suffering would show, drew on an image of science fiction. "It's a robot with empty eyes. And nobody cares nothing about me. It's wandering around—a robot with no place to go." In describing her picture, she mixes pronouns, calling the robot both "it" and "me." This wandering robot symbolizes emptiness, loneliness, and the lack of control that she feels at this stage of life. Perhaps most poignantly, the robot that is both her and not her is aware of itself as not real, inauthentic, and incapable of encountering self or engaging others.

A 70-year-old European American man described suffering as the terror he felt when he was 13. The year before, he was sent to live with and watch over his elderly grandparents. After his grandfather died, his grandmother "lost her mind," as well as a sense of time and place. He recalled that the elderly woman "would wake me up at 2 in the morning to eat dinner." His fear lay both in his grandmother's "craziness" and the fact that grandmother and grandson became strangers to each other. His current situation resonates to this powerful memory of chaos. He lives in a "changing" community where former friends and businesses have left the city, yet he himself lacks the resources, such as money and physical strength, to move away. His new non-English-speaking neighbors have "strange" customs and religious beliefs. He believes his neighbors do not like him; he cannot regain his place in the "foreign" country of his neighborhood.

Suffering as Loss
Most respondents said that to endure the death of a close relation, especially one's child, is the capstone of suffering. An 82-year-old European American man imagined that "for parents to stand over the coffin of their child because of their own negligence, I think that would be real suffering (crying)." Because he reported he had never lost a child, we can only wonder what recollection this picture represents for him, or what part of his psyche it draws on. Whatever the case, being responsible for the death of a dependent other evoked, for many elders, an inimitable anguish.

A 76-year-old European American woman suffered when she finally accepted the fact that her son, born with an incurable congenital disease, "would never get better." At that moment she "stopped praying and gave up hope." Although she said that she suffered because her son was unable to realize his "wonderful potential," she revealed that suffering also resulted from her loss of faith. She now links her reluctant acceptance of a disabled son with mourning those spiritual capacities—faith and hope—that might have helped her cope with his disabilities.

To suffer through loss is not only to lose loved ones but also to lose the roles that one held in relation to them. An 81-year-old African American widow claimed that her primary role in life was a caretaker. As the oldest child of seven, she took care of the younger children while her mother worked. Later in life, she nursed her mother and siblings through their illnesses and deaths. When the "last was gone" she felt bereft of her identity as well as her family. Her question to herself became, "Who am I without others to care for?" When asked what a picture of suffering would show, she nodded, as though familiar with the picture. "Somebody in pain and somebody watching." When asked who in the picture was suffering, she answered definitively. "Both, in a different way. One is suffering pain and the other is suffering because someone you love is suffering."

Because of the heightened incidence of chronic and acute illness in later life, physical pain is often part of an elder's daily life. For most elders interviewed, however, pain in itself did not cause suffering; they admitted that they could "take" pain. Rather, the experience of pain darkly colored their self and worldview. For them, the contingency of the pained body extended to life itself. Pain evoked fear of mortality—the loss of this life as we know it. Elders also suffered through the anticipation of more or greater pain, through not knowing its cause, or through the worry that they would suffer for no reason or toward no goal.

Illness and pain usually diminish an elder's social life; personal relationships shrink and interpersonal roles lose balance. The person can no longer depend on the "self" as it was, as elders eloquently state in their interviews. An 88-year-old European American woman who traveled extensively throughout her life describes herself as presently suffering because "I can't even walk to the corner without pain." Her pain from heart disease reduced her world and diminished her view of herself. She believed her status as a productive member of society ceased with the bodily changes of old age.

A 72-year-old European American man defined suffering as "physical agony. I had this aneurysm and they stapled me up. And they sent me home too early and I started spurting from the guts." His narrative revealed that important gender roles, such as husband, father, and worker, were affected by his pain, and so shaped his definition of suffering as an inability to be productive on both the work and home fronts.

A 78-year-old African American woman who recently survived a grueling double mastectomy defined suffering this way: "I had terrible pains and burns from the radiation. Where my breasts were just raw." For her, suffering was the physical pain that resulted from the "cure" of losing her breasts and from radiation treatments. When she first learned she had cancer, she urged her family to "keep it quiet" because of the shame she attached to it. Her embarrassment about cancer and the mastectomy, and ignorance about its prevalence, became a dimension of the disease that added to her suffering.

The impending loss of self through dying and death produced a particular type of suffering for elders. Most respondents gave short responses to questions concerning suffering before death. Many elders said that they seldom thought about this subject. Most added that they hoped "to go quickly." A 78-year-old European American man expressed himself succinctly. "Dying is suffering because you're sick and you're helpless, but death is just death. It's the finish." This elder believes that the illness and dependency that precede dying are a form of suffering. In other words, two themes—lack of control and loss—are combined in his thoughts about suffering before death.

An 82-year-old European American woman interpreted suffering before death as a summons to take final control over her life. "I guess you should have that feeling that you're going to die so you can say what you can and do what you can, like pay bills and tell the family where everything is before you go." For her, suffering before death is necessary; it motivates her to actively and concretely prepare for leaving this world.

Conversely, an 84-year-old African American woman described the anxiety attacks she experiences as suffering because she felt that they precipitated death. "When they [anxiety attacks] come on, you think you're dying. Your heart is beating real fast; you get sweaty. You feel like you're leaving here." Her fear of death did not motivate her to prepare for death. Rather, the sense that death was imminent paralyzed her.

Metaphors were sometimes used to describe feelings about oneself in the face of death. These metaphors, which were unique to each elder's circumstances, seemed to act as a bridge in their narratives. Metaphors allowed a flow of thoughts to go back and forth between discussion of life and death. An 82-year-old European American woman confided that "I feel like I'm empty inside, like I'm already dead. I feel like I'm just a shell of a person." On a follow-up call, this respondent felt much better. She had been taken to the hospital after a fainting spell. There, she learned that she was bleeding internally as a result of a stomach lesion and was given several blood transfusions. The wisdom of her body provided a metaphor—that she was "like a shell"—that both heralded death and caused her to staunch the loss of her life's blood.

The Personal Value of Suffering
Defining and interpreting the experience of suffering is based on, among other things, individual sensibilities, a model of how the world works, what suffering means, if anything, and how elders evaluate it. When asked if she had ever suffered, an 80-year-old European American woman answered in this way: "The most I'm suffering is right now because I get all this medicine, but I don't get any help. I feel like everything that's going on in here [points to head] is woozy. But what is it? One of the doctors said, ‘What do you expect? You’re 80.’" The unknown root of her suffering combined with her doctor's paternalistic indifference make her feel like a foolish hypochondriac. Because she does not know the cause or course of her phantom illness, she is unable to attach meaning, purpose, or value to it.

The fact that some elders could not evaluate their grief, pain, anguish, or fear of death itself became the experience of suffering. These respondents, however, were not the "norm" in our small sample. Most elders struggled to create or discover meaning for suffering and thus determine its value in their lives. For some, religious traditions provided a guideline to evaluate suffering. For many believing elders, suffering as a religious mystery is two pronged: It provides a model that says suffering is inherently valuable, and it provokes doubts about the religious truths of suffering.

An 80-year-old European American man lost his only son more than 10 years earlier in a car accident. Although he lives in "constant pain" from several debilitating illnesses, losing his son was and remains the "greatest suffering." When asked what a picture of suffering would show, he answered without hesitation, "Christ on the cross. That says it all." Because he perceived a crucified Christ as a model of suffering as well as the benefactor of eternal life, suffering offers inestimable value and an inherent promise of its end.

Conversely, a 73-year-old European American man doubted the religious truths his parents taught him. "My parents wouldn't like the things that I think now. I read different things like maybe all those things in the Bible, like an afterlife, [are] a fairy tale. Maybe Hell is right in this life; it's right here, right now." During his interview, this elder described himself as "like that old song says: scared of living and afraid of dying." Doubts about a joyful Heaven, yet fearing the Hell his parents preached about, combined with incipient physical problems, result in a purposeless and worthless suffering.

An 81-year-old African American man describes suffering as a torturous lack of self-knowledge. "When you think that you are something that you are not and when you find out that you are not what you think you are, then you really crawl into the grave! And that's to suffer spiritually." He admits that he experienced this type of suffering during a recent period of being "lost" to himself and to God through alcoholism. Because he was "so self-absorbed" he felt unable to chart a route back to self-understanding.

Elders sometimes revealed what their religion taught about suffering and how they internalized those teachings. Many elders saw value in suffering in light of a personally constructed, spiritual interpretation of the suffering incident rather than through their religion's traditional doctrine. Respondents created an individual theodicy that absorbed personal suffering and kept the sanctity of their beliefs, whatever they were, intact. For example, most religious believers in the study thought "God has nothing to do with suffering." Suffering was a "human" creation; it was God who comforted them, suffered along with them, or led them through or out of the experience with spiritual gifts, such as compassion or fortitude accrued through suffering.

Differences Among Suffering, Sadness, and Depression
A group of questions in our interview schedule asked respondents to differentiate among depression, sadness, and suffering. An 83-year-old European American woman described depression as "when you're down in yourself, it's from something that you have done; it's all you." The same respondent described sadness as "when I lost my sister," and suffering as "something that comes on you. You can't help it." Her internal–external distinction between depression and suffering was common in our sample. Suffering became an outside enemy that had somehow gained entrance inside an elder.

A 75-year-old African American woman who revealed that she had been "born poor" and remained that way through life defined suffering in this way: "Being in want—that's suffering. Things that you really need to survive and you don't have." To her, sadness was "losing my job at age 60." She described depression as "not able to get up out of yourself, you can't get out of your suffering or your being sad."For her the constructs of depression, sadness, and suffering were distinct but interdependent.

Each elder in our sample uniquely defined suffering, sadness, and depression and rooted his or her definitions in the context of the joys and sorrows, triumphs and struggles of a lifetime. A 74-year-old European American man revealed that he continues a lifelong battle with alcoholism. He described suffering as "the weakness I feel when I can't pass a liquor store without going in." He defined his depression as "an inability to get started or to finish things." Sadness was the emotion he felt when his "long-time companion," his pet dog, died.

Suffering as Transformative
Many elders experienced suffering as transformative. Elders proposed that suffering was an event or state of being that altered their self-view and worldview in a fundamental way. An 82-year-old European American man divided his life into before and after his wife's brain seizure, which left her without short-term memory. Because he believes that his wife lost her identity along with her memory, he feels that "for all intents and purposes, she is dead." His present circumstance seems to parallel his wife's liminal state—she is betwixt and between life and death and he is betwixt and between knowing "where" his wife is. Because his prayer is that she will predecease him, his suffering has become a race against time. He admits that his thoughts have "changed" since his wife's seizure. He thinks of things he seldom considered, such as "life everlasting." He feels pushed into another realm of consciousness—where things unseen and unproven to exist are important subjects for wonder and study.

An 80-year-old frail African American man cannot leave his apartment without assistance. He described suffering as an "inability to be active," and then he added, "but you only suffer so much until you just give up. See, you hurt yourself by not giving up." Because he accepts his dependence, he views himself as a person who continues to have choices, however limited, and therefore retains a sense of control over his situation.

We return to the 76-year-old European American woman who realized one evening that her infant son "would never get better" despite her desperate pleas to God. She described herself as "currently suffering" because she believes she will soon die. Although no doctor has told her that death is imminent, she feels its nearness. She described her suffering this way: "Suffering is a constant search for solutions. It's positive. I mean even though it hurts a lot, you're always busy asking questions." She highlighted the events of suffering in her life, such as the birth of her son and her own illness, not only as bridges from one way of life to another but also as bridges from being one person to becoming another. They were watershed events; the world, quite literally, would never look the same as it had before they occurred.

For our respondents, suffering as a lack of control was transformed into acceptance of a smaller sphere of personal control or humility. Suffering as loss was transformed into compassion for others' losses, or an awareness of the fragility of life. To find value in suffering, some informants transformed seemingly purposeless suffering into an admission that there may be a spiritual or nonmaterial aspect of themselves that needs acknowledgment or nurturance.

	DISCUSSION

TOP Abstract Methods THEMES OF Suffering Discussion Appendix References

 
This vast area of experience—suffering in old age—remains largely unexplored. Elders revealed that they had not shared their experiences with health professionals or clergypersons because they described suffering as more than mental, physical, or spiritual pain, as having an existential quality that is rooted in being human, and because they were not asked. Interestingly, the fear of one's life story not being heard, especially at the end of life, may be part of the experience of suffering (Picard, 1991). In this research, elders seemed pleased to be asked to disclose their life stories and stories of suffering to the intimate stranger—the interviewer—in the personal yet professional forum of the interview.

On the basis of our informants' experiences and expressions of suffering, we offer our own definition of suffering as a visceral awareness of the self's vulnerability to be broken or diminished at any time and in many ways. This definition draws on the inclusive definitions of suffering mentioned earlier in this article and also speaks to key experiential aspects of suffering that respondents reported.

First, part of the immeasurable and paradoxical nature of suffering is that, as an experience, it is both bounded and unbounded. Informants described the experience of suffering as both spatially and temporally bounded yet completely boundless in regard to term or insult. Both the enveloping nature of the experience, which could and did lead to uncertainty about if and when it would end, yoked together two normally incompatible experiential measurements, closure and openness. The outcome could be a dizzying sense of unreality and forced a question: "When will this end?" Suffering in age challenges the content and integrity of the future self.

Second, for some informants a sense of unreality was profound. Because of it, they existed in a social, psychological, and experiential liminal state. The period of present-day time was focused on intently, yet it did not follow the kind of "time" passed in presuffering life. In other words, time flew or dragged. This sense of unreality also led to an existential state of both living and watching oneself go through the motions of life, and it forced another question: "To whom is this happening?" The changes that suffering brought to bear on elders' bodies, roles, identities, and worldview often carried an acute sense of alienation.

Third, the experience of suffering is more than the sum of its parts. The suffering period, through its strangeness from or similarities to previous times in life, related to other biographic events. Elders interpreted suffering as alien in light of how they viewed and defined themselves before suffering began. Suffering not only heralded a need to reevaluate the self but also to find a way to reintegrate the self. Reevaluation and reintegration were accomplished by maintaining, somehow, the roles that gave meaning to identity, by assuming a new identity that is inchoate and breathing life into it, and by telling a story about it in the forum of the interview. Despite suffering's strangeness or interruption to the life lived, the suffering story generally reflected the life story as a whole.

We conclude, because of elders' interpretations of their own suffering and the key experiential aspects they reported, that suffering in older age is distinct in quality and meaning. This distinctiveness resides in elders' perceptions that their unique voices will soon be silent, their place in this world will soon be vacant, and their individual and cohort history is coming to an end. As elders perceive a diminishment of strength, cognition, and usefulness, there is constant awareness that time is running out; finding meaning in suffering, and in life, has a particular urgency.

In sum, issues of suffering are ultimately issues of identity—those of self and important others—in the face of finitude. Perhaps similar to those of the gravely ill, elders' hopes for this life are condensed into the small triumphs of every day, such as "waking up each morning" or "walking a block or two." In other words, hope rests on the diminution and arduousness of daily life.

	Appendix

TOP Abstract Methods THEMES OF Suffering Discussion Appendix References

 
Partial Questionnaire

1. Would you tell me the story of your life? Start where you like and take as much time as you need.
   
2. Would you describe an event or period in your life when you felt that you were suffering? What happened? How was it resolved?
   
3. How would you define suffering?
   
4. If you were going to draw a picture of suffering, what would it show?
   
5. How do your past sufferings influence the present quality of your life?
   
6. Do you think suffering is a "normal" part of life? A "normal" part of growing older?
   
7. Do you suffer when you experience certain feelings, such as regret, remorse, or guilt over things that you did or did not do in your life?
   
8. What do you think is the purpose of your suffering?
   
9. What does your religion say about suffering?
   
10. Why do you think God allows us to suffer?
    
11. Do you think that being older and closer to the end of life is a form of suffering?
    
12. Do you think older people suffer more than younger people?
    
13. Do you ever think about suffering in relation to dying?
    
14. What do you think happens after we die? Do you think we still might suffer then?
    
15. Can you think of anyone—a particular person or a group—who has suffered for a cause?
    
16. Is there such a thing as quiet or silent suffering, or is suffering always expressed in some way through words or cries or gestures?
    

	Acknowledgments

 
We give our heartfelt thanks to the men and women who shared their life stories and stories of suffering. This research was supported (in part) by the Fetzer Institute.

	Footnotes

 
Decision Editor: Charles F. Longino, Jr., PhD

Received for publication November 13, 2002. Accepted for publication August 25, 2003.

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TOP Abstract Methods THEMES OF Suffering Discussion Appendix References

 

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