V. THE EXPERIENCE OF HEALTH AND ILLNESS

Some would argue that given the wide range of historical, cultural, and individual differences concerning health and illness, little could be said on the topic that would have universal validity. Others would point toward certain invariant features of the human body, psyche, or society that could ground cross-cultural commonalities. Presented here is a description of health and illness as experienced within a contemporary Western context. While this description may not be universally applicable, it nonetheless provides a starting point for elucidating similarities and differences among cultures and individuals.

The Experience of Health

In setting out to portray the experience of health, one is struck by how little people are used to focusing on it. This tendency to overlook health—to take it for granted—is also reflected in the paucity of descriptive literature on the subject. In many ways this is precisely the point. To be healthy is to be freed from some of the limitations and problems that promote self-reflection. A healthy person need not pause before scheduling a dinner for later in the week or grabbing a shovel to clear the driveway of snow. The state of health that allows for such engagements remains the tacit background of what Maurice Merleau-Ponty, drawing on the work of Edmund Husserl, calls the bodily "I can": I can get out of bed, move across the room, brush my teeth, and so forth, without a need to explicitly define or acknowledge these abilities—or the wellness that make them possible.

Sometimes people are provoked to reflect on their good health: they revel in their renewed strength after a bout of flu, for example. Health is thus illuminated by contrasting experiences. Certain practices, such as yoga, tai chi, and exercise programs, can systematically teach one to cultivate and appreciate the healthy state, heightening self-awareness.

However, Western culture has tended to neglect or demean bodily experience in favor of a detached rationality or cultivation of the soul (Leder, 1990). People learn to overlook or overcome the body until it seizes their attention, as it does at times of pain and illness. Even preventative health education tends to focus on external guidelines concerning exercise, diet, and the like, but do little to cultivate an inner awareness of the body's own voice. Perhaps many illness states could be avoided if people were better listeners to the subtler messages of the body that signal a departure from good health. Yet to be healthy is ever a temptation to overlook, or look beyond, the body. The word health comes from the same root as the word whole. The healthy body operates as a harmonious whole, allowing one to feel at home in the world (Svenaeus) without the need for undue self-reflection.

Disease and Illness

Illness makes one aware of the precariousness of the world. To capture the profound dislocations caused by illness, it is useful first to distinguish between illness and disease (Cassell, 1985; Engelhardt, 1982). Modern medicine has been largely concerned with understanding and treating specific diseases. Yet to diagnose an individual as having a disease means looking beyond that particular individual: one notes a cluster of signs and symptoms that have repeatedly presented in a range of cases. The disease label also frequently (and ideally) invokes an explanatory etiology, a prognostic picture, and a set of treatment options, all drawing upon the theories and knowledge base of medical science. Since the eighteenth century, disease classifications have progressively moved from a basis in the patient's reported symptoms to one grounded on the pathological lesions and processes exposed after death or, by medical technologies, in the living (Engelhardt, 1986; Foucault). Hence, dyspepsia has become peptic ulcer disease. This shift has greatly advanced the explanatory and therapeutic powers of modern medicine, but it has also diminished the attention paid to the patient's experience.

In contrast to the medical characterization of disease, the term illness refers to the experience of sickness. To fall ill is to undergo a series of transformations that distinguish this state from health. In a sense, any illness is inescapably individual. Even if one shares the same disease with another, the challenges, limitations, and suffering involved can vary considerably from person to person. Yet just as the physician-researcher can uncover the repeated patterns typical of a disease, one can describe certain features that commonly accompany the illness experience (Toombs, 2001).

ILLNESS AND THE EXPERIENCE OF THE BODY. If health is a kind of wholeness—an integration along a number of dimensions—illness involves a set of experienced disintegrations. This is first seen in relation to the body. Ordinarily, the body operates as a seamless whole (Merleau-Ponty, 1962): in response to one's perceptions one moves through and acts upon the surrounding world, with the internal organs supplying the needed life energy. In illness, however, the body can split into problematic parts and functions. An aching stomach or a pulled muscle suddenly stands out from the rest of the body, demanding attention. As one's organic harmony is disrupted, so too is one's integration with the world. The ill body is no longer at home in its world, but is awkward and limited, and even simple physical acts become difficult.

This dis-integration of the body within itself and from its world also brings about a felt split between the body and the self. Ordinarily, the body is an inseparable part of one's identity, grounding one's interactions with the environment. When one falls ill, however, this body becomes something alien (Leder, 1990; Zaner, 1981), causing pain, limiting movement, or humiliating the ill person with an unpleasant look or odor. One's own flesh seems capable of thwarting and opposing one in a way health had not fully revealed.

This experience presents a severe challenge to one's usual sense of selfhood and autonomy. The ill person may neither understand nor control what is happening within the body, though one's life may depend upon the outcome. One's knowledge of the body becomes mediated through others: the physician who diagnostically probes it, or the surgeon who opens it up, scrutinizing organs the patient has never seen.

ILLNESS AND THE EXPERIENCE OF SPACE AND TIME. These modes of embodied dis-integration typical of illness also suffuse experiences of space and time. When a person is healthy, space unfolds as a field of possible movement, of activity, of desires to be fulfilled (Straus, 1963), whether it be a flight of steps one knows one can climb or an open street one can cross. With many forms of illness this spatial field is disrupted. One may remain confined in a bed or unable to climb a flight of stairs due to arthritis or a neuromuscular disease.

As space is thus altered by illness, so too is time. Ordinarily, human beings dwell largely in the future (Heidegger), with present activities geared toward the future accomplishment of desired goals—on the way to the paint store, one is envisioning the fully painted room. But when one is sick the way toward the future is blocked, and a claustrophobic world of concern closes in on the sufferer. Even a world traveler or delightful raconteur can transform into an intolerable bore who obsesses about illness minutiae.

There are avenues of escape for the ill person. One can "lose oneself" in a good book or television. One can dwell in nostalgia for a pain-free past or dream of a future restored to health. But these wanderings never fully lose their character as modes of escape from the confinements of illness.

ILLNESS AND THE EXPERIENCE OF OTHERS. This disintegration of our spatiotemporal world is often matched by a felt disunity with others. When healthy, one is a part of the mainstream, involved with work, family, and socializing. Yet as simple a sensation as pain can suddenly open a profound distance (Scarry). Though just inches away and sympathetic, another person cannot experience one's pain. It may not even be possible to communicate one's pain, for this most private of experiences is notoriously resistant to expression.

Illness can cut one off from others not only through pain, but through disabling effects. One lingers in bed while everyone else heads off to the duties of a busy life. The energy to work and socialize may be lost. "I don't want you to see me like this" is a frequent refrain of the person reduced by illness to sallow skin or loose bowels, and the healthy may often wish to avoid the world of the sick, which only serves as a reminder of one's own vulnerability.

Loneliness can thus contribute greatly to the suffering of the ill. There is a sense of exile—from one's body, from one's activities and goals, and from one's fellows. In the face of this exile, social connection often takes on heightened importance for the sick person. The compassion (etymologically, "to suffer with") that grounds another's willingness to listen to, touch, and care for the sick person can do much to alleviate suffering (Kane).

ILLNESS AND THE EXPERIENCE OF THE COSMOS. The term cosmos refers to the world discerned as an ordered and harmonious whole. This is precisely what illness can bring into question. Imagine discovering in the midst of an ordinary day a growth that is subsequently diagnosed as malignant. Questions scream forth: "Why has this happened?" "Why now?" "Why to me?" The possibility arises that these questions have no good answers. Ordinary structures of meaning are shattered.

This felt meaninglessness can prove all but intolerable. Any meaning may be preferable, even a negative one such as: "I have been bad and this illness is my punishment" (Kopelman). The ill often search for their offending infractions, be it smoking, eating fatty foods, having a "cancer-prone personality," or transgressions against God. This association of sickness and sin preserves the coherence of a just universe, as well as the sense of one's own power within it. However, this reading of illness brings its own sense of painful exile. Sickness remains a scarlet letter, branding the ill person's moral failings. The healthy, eager to strengthen their own illusions of security and superiority, may be willing to collude with this judgment.

Illness, then, is not simply a biological event; it is also an existential transformation. One may be stripped of one's trust in the body, reliance on the future, taken-for-granted abilities, professional and social roles, and even one's place in the cosmos.

Of course, this need not always be the case. The experience of illness varies widely, and much depends on the nature of the attacking disease, the vagaries of individual psychology, and the social milieu. Some of this diversity is captured in the growing literature on medical phenomenology and so-called pathographies—accounts of illness written by or about the sufferers (Brody; Hawkins). One can ultimately imagine textbooks of illness, as there are now for diseases, that would describe experiences typically or possibly associated with severe psoriasis, heart attacks, neurological diseases (Sacks), and other conditions.

ACUTE ILLNESSES AND INFLICTED TRAUMAS. With acute but transitory illnesses, such as the flu, discomfort and disability can shrink one's world and distance it from that shared by others, but the horizon of health remains visible. One is buoyed by the assurance that this illness is temporary, that after this brief visit to a foreign land one will surely return home. The sense of suffering and cosmic dislocation are thus held in check.

Then there are illnesses and traumas of acute onset but more catastrophic consequences. One may have a car accident, for example, or suffer a serious heart attack that threatens one's life even after recovery. The sudden anomalous nature of such events leaves its own psychic scars. The world and one's body seem less safe, more a house of horrors in which dangers can leap forth from anywhere. This sense may be especially acute when trauma is inflicted by another, as through a gunshot wound or sexual assault (Brison). The embodied self is revealed as profoundly vulnerable to disruption, penetration, or violation by others.

In the face of acute catastrophe, William F. May suggests that a person may experience something of an existential obliteration. He describes a patient suffering from severe burns covering two-thirds of his body, who calls out: "Don't you see, I am a dead man" (May, p. 16). However, this "death" can be followed by rebirth. This is not simply a reclamation of one's previous self, but the forging of a new self, with its own strengths and virtues (Brison).

This can be especially difficult, however for those victimized by others, as in cases of child molestation or spousal battering. Here, the confinements imposed by illness take on new dimensions. The victim is entrapped not only within physical suffering but by a double imprisonment, both external and internal. There are external barriers to breaking free of the violence—in the case of molestation, the power adults exert over children; in the case of a battered wife contemplating escape, the difficulty in attaining employment, financial independence, shelter, and child care. There are internal barriers as well. The victim often feels guilty, tainted, or shamed by his or her participation, and may thus become secretive and complicitous. Feelings of powerlessness and low self-esteem set in: "This will never change. There's nothing I can do. I'm not worth it anyway." Finally, as awful as this abusive world is, it is familiar, and one may cling to it for security amid the fear. Many break free, but social and psychological forces can also pull victims back, making escape an arduous struggle.

CHRONIC ILLNESS AND DISBILITY. Many illnesses are neither transitory nor based on acute events: Instead, they are chronic, lifelong, and involve relatively stable or progressive patterns of disability (Toombs et al., 1995). Forms of arthritis, bronchitis-emphysema, kidney disease, diabetes, Alzheimer's disease, colitis, and autoimmune diseases, for example, fall into this category. While onset may come early in life, the elderly often suffer from such degenerative conditions. Due to the aging of the overall population, along with advances in the prevention and cure of acute disease, chronic illness is increasingly the staple of medical practices and hospital care.

Chronic illness can bring with it all of the dis-integrations described above. Unlike acute and treatable illness, there may be no horizon of health that allows one to look beyond present suffering. The day-in, day-out persistence of pain and disability, without hope of relief, can bring about a kind of existential fatigue that leads to despair. With severe arthritis, for example, even tying one's shoe can become difficult. But the chronic nature of such conditions can also give one time to work through its meanings, and to build strategies for physical and psychological coping. One needs to realistically accept limitations, while also claiming the possibilities that remain for fulfillment.

The burgeoning field of disability studies has supported sustained reflection on the phenomenology of specific conditions, such as paralysis (Robillard) or blindness (Hull), and the way these are socially constructed (Michalko). There is a danger to assimilating such conditions, sometimes present from birth, to an illness model that emphasizes suffering and limitation. The disabled individual has often developed alternative abilities that are powerfully life enhancing. It is therefore important to develop attitudes and social policies that respect the diversity of human embodiment.

Disability resulting from chronic progressive illnesses can pose a particular challenge to the individual. S. Kay Toombs, in her book The Body in Multiple Sclerosis (1992), discusses her condition in this light. The disease is typified by sudden exacerbations and remissions (e.g., of visual disturbance or bowel and bladder incontinence), but with a gradual buildup of neurological deficits over time. There is thus a continual need to redefine the self in the face of new incapacities. Adjusting to muscle weakness, one becomes accustomed to using a walker until, as the disease advances, one becomes wheelchair-bound. The dignity associated with the upright posture is thus lost, together with passage to regions formerly accessible. The ill person faces the Sisyphean task of repeated readjustment without promise of rest. Yet even under such trying conditions, individuals find modes of strength, support, courage, and consolation to meet the existential challenge.

Medical Treatment and Healing

Taken seriously, the experience of illness leads to the question of what impact the medical profession has upon the sufferer (Toombs, 1992b). When illness results from an easily curable disease, medical treatment surely plays a powerful role in restoring the individual to wholeness. Such a remedy is not always possible or immediate, however, nor are the experiential impacts of healthcare always benign.

While the concept of iatrogenic disease (disease caused by medical intervention) is well known, there is also the possibility of iatrogenic illness. Many of the experiential disintegrations associated with illness can also be brought about or exacerbated by the process of medical treatment. When illness fragments the body into problematic parts and functions, and renders it alien to the self, the process is often intensified in the doctor's office. The physician has the patient disrobe, probes and palpates different organs, investigating the body as if it were a malfunctioning machine, and the patient learns to internalize an objectifying gaze on the body.

Similarly, treatment can exacerbate the disruption of space, time, and social relations. Hospitalization provides a vivid example. One's clothes, a mark of personal identity, are replaced by a hospital gown embarrassingly open at the back. One is dislocated from the routines of everyday life, leaving friends, family, home, and community for a world of strange rules and protocols, frightening technologies, and authorities who loom and disappear. Just when one's world most needs shoring up, it is further fragmented.

Medical language also effects subtle but pervasive displacements. Struggling to make existential sense of what is happening and why, the patient may find little help in diagnostic labels. In Tolstoy's story "The Death of Ivan Ilych," Ivan grapples with the profound issue of his life and death, but for the doctor, "the real question was to decide between a floating kidney, chronic catarrh, or appendicitis" (Tolstoy, p. 121). This exclusive focus on disease leaves the illness unaddressed. Loneliness is intensified when one most needs communion; the search for meaning is truncated by a heap of scientific words.

Some of these deficiencies so characteristic of contemporary medicine emerge from its basis in a mechanistic worldview. The seventeenth-century philosopher René Descartes, who helped lay the groundwork of modern science and medicine, took a dualist position. The human being, he argued, is a conjunction of two very different parts—the mind, imbued with rationality and free will, and the body, a mechanism governed by the same physical laws as the rest of nature. In this view, bodily disease can be understood according to the model of machine breakdown. Doctors become scientists or technicians who fix or replace broken parts. This Cartesian paradigm has generated the search for precision drugs and surgical procedures, the emphasis on scientific (rather than humanistic) training for the physician, and the hospital conceived as a temple to technology. Much of the efficacy of modern medicine rests on its dualist and mechanist foundations. But this focus on the body-as-machine has also led to a neglect of the ill person struggling with profound existential dislocations (Leder, 1992).

Nonetheless, many sensitive clinicians do seek to be healers of illness. To "heal" is to begin reweaving into wholeness the tapestry of life shredded by illness. Even when disease is not curable, the practitioner can try to relieve pain and preserve physical function, explain what is happening within the patient's body, and encourage the patient to be an active participant in treatment. Thus, the ill person regains a measure of knowledge and control.

Cut off from others by the privacy of pain and the loss of function, the sick person may reach out to the provider with the longing of a shipwrecked castaway who spies a sail on the horizon. When the patient is permitted to tell his or her story—to voice fears, ask questions, and hear genuine responses—a social reconnection is forged. The practitioner furthers this process by informing and mobilizing the patient's support system. The participation of family and friends is welcomed, and isolating modes of treatment such as hospitalization can, when possible, be avoided.

Just as the body seeks to heal itself, so individuals seek an interpretive healing by trying to make sense of what has occurred (Kleinman) and telling stories about it (Frank, 1995). Anne Hawkins has studied written accounts of illness and charted out the mythic motifs the sick often use. People suffering from disease may see themselves in an heroic struggle against a dangerous foe, or as journeying to the underworld to retrieve a great prize. These myths can sometimes turn disabling, however. For example, the battle metaphor provides little guidance or solace when the disease finally emerges as the victor. Susan Sontag, in Illness as Metaphor (1990) focuses on such dangers of understanding disease metaphorically, suggesting that the practitioner may need to challenge a patient's unhelpful fantasy. But these mythic interpretations can also play a healing role, helping the ill person to render events coherent, to rise to the occasion, and to work creatively with the challenges faced (Hawkins). The practitioner who resists the temptation to rely on reductionist "medicalese" or on metaphors foreign to the needs of the patient can support the patient's own healing narrative.

Ultimately, healing is not just a reconstruction of a prior life, but the building of something new. Through illness people often develop a deeper compassion for others, a greater intimacy with loved ones, an attentiveness to the joys of ordinary living, or a reordering of lifestyle and priorities. It is not unusual to hear a patient say "This cancer [or heart attack, etc.] is the best thing that could have happened to me." For such people, illness is not the diametrical opposite of health. Rather, it is the first stage on a healing journey, summoning the person to needed changes, whether physical, emotional, social, or spiritual.

The suggestion that illness can be a grace is not a license to grow callous to the suffering involved, however. Few seriously ill people wish to be told, "Cheer up, this disease is great for you." But the patient and practitioner alike can remain open to the healing gifts that illness may bring, albeit wrapped in a dark package.

Bioethical Implications

The illness experience has implications not only for clinical practice but for the field of bioethics. Bioethical reflections need not be top-down starting from overarching theories and principles that then are applied to cases. They can be bottom-up commencing with the concrete situation of the ill and drawing out the needs and moral claims that follow. Indeed, some suggest that bioethics is undergoing a paradigm shift, with a new openness toward methodologies that pay close attention to the experiences of illness and caregiving (DuBose et al.; Welie). Several consequences might ensue for the field.

First, taking lived experience more seriously may shed new light on the traditional issues of bioethics. For example, truth-telling and informed consent are often supported by reference to a Kantian framework of "respect for persons." Within this framework, emphasis is placed on preserving the individual's autonomy. However, when moving from this abstraction to the concrete situation of the ill, new features come into view. It is not simply the autonomous individual of ethical theory who arrives at the doctor's office in pain. By this time the person's sense of lived autonomy may already be compromised by uncertainty and confusion, emotional turmoil, a threatened future, and a body run amok. In this light, informed consent becomes not simply a way to preserve autonomy prior to treatment; it also becomes a part of the treatment itself, restoring autonomy through enhancing the patient's knowledge, control, and trust in others.

Of course, much depends on how the truth is conveyed. Medical jargon that sets forth the facts of the case can actually disempower the ill person. As with Ivan Ilych's doctor, the physician's terms may obliterate the patient's narrative. Moreover, the theater in which this conversation is enacted is the physician's domain. He or she is in a position of power, with privileged knowledge, authority, and professional status (Zaner, 1988). To really understand informed consent these inequalities of power that define the doctor-patient encounter must be understood. In such ways, paying close attention to the experience of health and illness could reshape the current approach to traditional issues of bioethics—including those of organ transplantation, abortion, the termination of life-support, and many others (Toombs, 2001).

At the same time, an experience-based bioethics might call attention to other issues that have hitherto been neglected. Bioethical discourse has typically focused on particular quandaries brought about by new technologies and conflicting moral intuitions. When should one "pull the plug"? Who has the right to refuse treatment? When can confidentiality be breached? While such issues are real, they often leave unquestioned the general context of medical practice, as if only special dilemmas call for bioethical thought. But the experience of illness and treatment is intrinsically a moral theater. The ill person is confronted with the dis-integration of his or her world and must grapple to restore "the good" or forge a new vision of it. The individuals and institutions involved in healthcare participate in this drama in myriad ways—the language used, the texture of personal relations, the fees exacted, and the structuring of space and time all have ethical significance.

One promising topic for an experience-based bioethics is thus the moral ecology of healthcare institutions. One example is George Agich's 1993 study of long-term care, which details how the lived experience of autonomy is enhanced or diminished by environmental patterns. Are schedules set for the convenience of a nursing home bureaucracy, or are the client's needs kept in mind? Are there spatial cues to orient the elderly resident, or does the layout of the home contribute to confusion, powerlessness, and isolation? Is infantilizing baby talk the everyday language, or is there an atmosphere that enhances dignity? Such issues are not as dramatic as those that make bioethics headlines, but they are at least as significant to the lives of many. One can imagine the day when institutional ethics committees attend to such issues of moral ecology, not simply the exceptional-quandary cases.

An experience-based bioethics would also look at the burden placed upon the individual practitioner by the special situation of the ill. This is not just a matter of "What action do I take?" (the focus of deontological and utilitarian ethics), but of "What kind of person should I, the caregiver, be?" (the focus of virtue ethics). The isolation and incapacity of the ill underscore the importance of needed virtues in the practitioner, such as compassion and trustworthiness (Pellegrino and Thomasma).

An experience-based bioethics also demonstrates that it is not simply the practitioner who is a moral actor, but also the ill person (Zaner, 1993). Though defined as patient, he or she is also an agent wrestling with a profound existential challenge (May) as described in illness narratives (Broyard; Price). In the face of the dis-integrations described above, the sick person cannot evade responsibility, literally the ability to respond to circumstances. Depending upon the qualities of this response, the individual can either forge a good life even in the face of suffering or yield in to bitterness and despair. Special virtues are called for in meeting the challenge of illness, including courage, patience, hope, humility, and proper assertiveness. Sickness is an arena that calls people to test and reforge who they really are and who they wish to be. For too long the ill person as agent has been absent from bioethical reflection, and from much of clinical practice. Close attention to the illness experience can help remedy this situation.

drew leder (1995)

revised by author

SEE ALSO: African Religions; AIDS; Alcoholism; Anthropology and Bioethics; Bioethics, African-American Perspectives; Care; Compassionate Love; Epidemics; Family and Family Medicine; Genetics and Racial Minorities; Grief and Bereavement; Healthcare Systems; Human Dignity; Informed Consent; Life, Quality of; Mental Illness; Narrative;Patients' Responsibilities; and other Health and Disease subentries

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