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8 Illness Behavior and the Experience of Pain hronic pain is experienced not only as bodily ~J discomfort but also as fears about the future, work impairment, threats to family bonds and activities, and assaults on the priorities of one's daily life. How an individual reacts to physical symptoms be they pain or any other symptom~epencls on his or her past experience with illness, personality and coping styles, familial and cultural norms, and current interpersonal interactions. How symptoms are perceived and the meaning attributed to them may, in turn, powerfully influence their subsequent intensity and duration, the nature and extent of help-seeking behavior, and whether the person comes to view him- or herself as sick, impaired, and deserving of disability benefits. As emphasized throughout this volume, chronic pain is not an entity, but a process. Furthermore, it is simultaneously a physiological and psychosocial process. The Social Security Admin- istration (SSA) specifically asked the Institute of Medicine (IOM) study committee to address the psychosocial aspects of the pain experience and to describe how the concept of illness behavior provides a frame- work for understanding the observed discrepancies between the cTini- cal manifestations of pain and the behaviors of people with pain. ILLNESS BEHAVIOR: AN INTEGRATING CONCEPT Much research and clinical experience with pain have demonstrated that there is no clear relation between the amount of tissue damage and the degree of discomfort or functional disability reported by the 146

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ILLNESS BEHAVIOR ED THE EXPERIENCE OF PEN 147 patient. The nature of the pain and its underlying physiological factors affect the course from acute pain to chronic pain to functional disabil- ity. Yet for many, and perhaps most, of those who go through this process, psychosocial factors are inextricably intertwined with physi- ological change and may even be primary (Better et al., 1979; Brena et al., 1979; Brena and Chapman, 1984; Carron et al., 1985; Dworkin et al., 1985; White, 19661. The marked variability in individual behavior, despite the similarity of symptoms and pathophysiological processes, reflects major differences in psychological and cognitive predisposi- tions as well as prevailing sociocultural norms. The concept of illness behavior provides a useful way of understand- ing and describing the many psychosocial influences that affect how people monitor their bodies, define and interpret their symptoms, come to view themselves as sick and disabled, take remedial action, and use lay and professional sources of help (Mechanic, 19781. The concept draws on psychological theories of perception, cognition, and meaning attribution and on theories of social relationships. A crucial premise in the study of illness behavior is that illness, as well as the illness experience, are shaped by psychological, social, and cultural factors irrespective of the genetic, physiological, or other biological bases of disease. Hence, as used here, illness and disease are distinct. Disease refers to a specific clinical entity characterized by a disturbance in the structure or function of any part, organ, or system of the body. Illness is a broader concept that refers to any condition that a person views as sickness (Eisenberg, 19771. Whereas the magnitude, severity, persis- tence, and character of symptoms affect and establish limits for personal and social definitions of illness, there is considerable variabil- ity in what is perceived, how it is defined, the interventions that are considered and used, and the outcomes of illness. Thus, illness behav- ior is a dynamic response to changing bodily sensations. It reflects not only the individual's psychological predisposition, but also the broader socioeconomic and cultural context within which the individual lives. For the physician, as well as the disability examiner and the law courts, much of what is involved in understanding a person's com- plaints of chronic disabling pain that seem disproportionate to objec- tive clinical findings may be clarified by the concept of illness behavior. This concept also helps to explain why some people who have well- substantiated diagnoses of painful diseases and obvious physical limitations continue their usual routines and push themselves to perform beyond the levels observers might expect. Since the term "illness behavior" was first introduced (Mechanic, 1962), the concept has been widely adopted and adapted, and, in the

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148 INFLUENCES ON PEN ED Ply BEHAVIOR committee's view, sometimes misused. IlIness behavior is neither a disease nor a diagnosis. Neither is it static; it is a process that unfolds over time as people struggle to achieve some accommodation or mastery over their health problems. In the committee's view, the ten- "abnormal illness behavior" is likely to be confusing because it suggests a simple dichotom~normal and abnormalrather than a range of behaviors that are highly individualistic and variable. For the purposes of medical treatment and rehabilitation, it is important to understand each particular behavior. Lumping behaviors together under a convenient rubric may obscure crucial distinctions. THE PROCESS OF ILLNESS BEHAVIOR Although illness behavior is best conceptualized as a process, it is important to note that it usually does not proceed in a straight path from one well-defined stage to another. Rather, there are likely to be bidirectional interactions between four elementssymptom perception, symptom interpretation, symptom expression, and coping behaviors. Symptom Perception The process of illness behavior usually begins when a noticeable change in bodily function is interpreted as a symptom of ill health. Symptoms are necessarily experienced against the background of a particular individuaT's ordinary functioning. All of us know how our bodies behave in the multitude of circumstances that make up our daily lives. If we choose to focus on our bodies for a few minutes we become aware of sensations associated with breathing and moving that we normally do not notice. At other times, changes in functioning may be readily apparent but their proximate cause is so obviously not an illness that we do not call these altered sensations symptoms. After physical exertion, for example, our increased respiratory rates, diffi- culty breathing, muscle fatigue, and the like may be experienced as discomfort or even as pain, but they are unlikely to be perceived as "symptoms." Consciously or unconsciously we "cognitively packaged" the changes in functioning and attributed them to our recent exertion. In the course of our daily lives we constantly interpret bodily sensa- tions and assign meaning to them, often without being aware of it (Pennebaker, 19821. For a change in functioning to be interpreted as a symptom it must have evoked concern that the alteration is somehow not normal and is not readily accounted for except in the framework of illness. The

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ILLNESS BEHAVIOR ED THE EXPERIENCE OF PEN 149 perception of a sensation as a symptom of ill health involves catego- rizing the experience and assigning meaning to it. Our past repertoire of experience with our own and others' illnesses provides the basis for making such interpretations. These interpretations then affect our perceptions such that the processes of perceiving and assigning mean- ing to symptoms become intertwined with values and beliefs and influence each other (Cassell, 19851. Attention (selecting and integrating sensory input from the external and internal environments) plays a major role in the experience of pain. A cardinal characteristic of pain is that it has a unique ability to captivate and hold one's attention. The patient who has suffered a significant injury or disease and fears a recurrence of the pathology may be constantly on the alert for any physical signs or pains associated with the feared disorder. Another curious property of pain is that attention directed to it typically exaggerates its aversiveness (Pennebaker and Epstein, 19831. As individuals think about their pain, it tends to become more intense and disabling, whereas distrac- tion and meaningful activity are likely to reduce the salience of pain experiences. Thus, some people believe that as activities (including work) become more rewarding and stimulating, people will be less likely to focus attention on themselves and their incapacities. On the other hand, because pain is distracting, it may make work and other activities seem less rewarding and stimulating. The degree of aware- ness of one's own pain may vary from a near denial of its presence to an almost total preoccupation with it, and the reasons for attending to pain may vary. Pain itself may become the focus of the self and self-identity, or may, however uncomfortable, be viewed as tangential to personhood. One of the most powerful influences on the way in which symptoms are perceived and the amount of attention paid to them is the meaning attributed to those symptoms. Meaning Attribution Meaning attribution about the cause and likely outcome of symp- toms is influenced by a host of psychosocial and cultural factors as well as by a person's prior experience with illness. Assigning meaning to symptoms can be a conscious process that helps people structure the experience, or it may occur outside of awareness. A person's report of symptoms inevitably reflects not only the nature of the experience but also its significance to that person. A person's assessment of meaning may be as important to symptom formation as the disturbances in functioning for which the meaning is invoked (Cassell, 19851.

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150 INFLUENCES ON PAIN AND PAIN BEHAVIOR The meanings given by a patient to an accident, sickness, personal suffering, or the relentless presence of pain affect subsequent illness behavior and help to order experience in several ways (Engel, 1959; Taylor, 1983~. First, meaning is associated with a sense of coherence or purpose for life events. Patients seek to comprehend why an accident or sickness has occurred and what impact it has had and will have in the future. Causal attributions are formed by patients to account for current unfortunate circumstances. These formulations shape the meaning of the situation and can open or close options for actively dealing with it or the feelings it evokes. Second, the ability to assign meaning to an illness or to symptoms has been found to enhance some patients' sense of self-mastery over a problem or crisis (Lewis, 19821. For example, the limitations imposed on a patient's lifestyle by chronic pain may be significantly attenuated if the patient believes that he or she can control the pain or can, despite the pain, undertake activities without harm (Averill, 1973~. In con- trast, it has been observed that patients who believe that they have little or no control over their health and well-being work less effec- tively with health care providers to achieve rehabilitation (Pilowsky, 1984). Finally, the personal meaning of an illness or symptom may affect self-esteem either positively or negatively. Becoming an invalid, even briefly, can be a blow to a person's self-esteem. Similarly, being unemployable or forced to accept employment at a lower wage or job status because of pain can be demeaning. However, for some patients embracing the sick role is seen as an elevation in status. These people value the nurturance and special consideration of friends, family, and neighbors that follow injury and the develop- ment of chronic pain. Personal meanings are likely to be influenced by the shared meanings of the group to which the individual belongs. Studies of various socioeconomic, cultural, and religious groups reveal that the meanings associated with pain tend to vary by group mem- bership (McKinIay, 1975; Zborowski, 1952; Zola, 1966) and by the structural characteristics of ethnic and cultural groups (Suchman, 1965, 1966). The meaning attributed to pain influences whether or not suffering occurs. Although suffering and pain are often associated with one another, they are distinct phenomena. First, the degree of suffering is not necessarily related to the degree of pain. People may tolerate severe pain without suffering if they understand (1) the source of the pain, (2) that it is not dire, (3) that it will end, and (4) if means exist to control it. Second, suffering commonly occurs in the absence of any

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IL=ESS BEHAVIOR ED THE EXPERIENCE OF PEN 151 physical distress, for example, in someone who is anticipating the return of a terrible pain even though the pain is not currently present, or when one is unable to help a loved one in pain. For some people, pain and suffering have religious and moral significance. The Judeo-Chris- tian tradition has attempted to interpret the moral significance of suffering in numerous texts. Some people view pain and suffering as tests or trials of their moral worth. Others view them as conditions that may purify or "cleanse" the character or soul. Health care providers need to be sensitive to the possible clinical significance such interpretations can have both for patients and providers in the treat- ment of chronic pain (Cassell. 19821. The interpretation of symptoms and the meaning assigned to them may have a profound influence on coping responses. Whether or not people who perceive a change in their physical functioning attribute the alteration to sickness will obviously influence their help-seek- ing behaviors. Particular meanings may result in more or less produc- tive responses that may affect patients' rehabilitation potential. The expression and communication of pain in the family and other social settings is also influenced by the meaning attributed to the symptom. Expression and Communication Although pain is subjective, it is the outward expression the observable illness behav~or~of the patient in pain (rather than any subjective state or physiological indicator) that defines the severity of the problem for others. Particular words chosen by the person to describe his or her pain let others know about the experience. Move- ments and body postures, as well as nonverbal vocalizations (sighing, groaning) are also powerful indicators of pain states. Body language expressive of pain may include posturing, bracing, grimacing, rubbing, gasping, or withdrawal from normal activity. Facial expression is a principal cue for caregivers' perception of patient distress, which influences the level of concern expressed for the patient (Le Resche and Dworkin, 1984; von Baeyer et al., 19841. The method of pain expression influences how the individual is judged by others. While those who appear more stoical and less histrionic may have their pain taken more seriously by caregivers, it is also possible that they may be taken less seriously and receive less attention from caregivers than patients who express pain more vocally or dramatically. As discussed later in this chapter, because pain expression is influenced by familial and cultural norms, it may not be a good indicator of severity.

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152 INFLUENCES ON PEN ED PEN BEHAVIOR Help-Seeking Behavior and Other Coping Responses Like all the other aspects of illness behavior, how people cope with their pain or other symptoms is determined in many ways and varies from person to person. Coping responses may be more or less adaptive and more or less consciously motivated. Although some people may deny their symptoms and diseases, others may exaggerate them. The abnormal functioning that occurs in chronic illness leads inev- itably to compensatory behavior that may have positive or negative effects on subsequent symptoms and functional levels. One group of compensatory mechanisms serves to avoid unpleasant symptoms. For example, guarding a painful joint reduces its activity, which leads to increasing involuntary immobility (the origin of the common condition called "frozen shoulder"~. Similarly, reduced physical activity will eventually decrease the effective muscle mass, which makes physical activity more difficult. On another level, the sick person may develop reclusive behaviors that further exaggerate the social loss of being ill. Another group of compensatory mechanisms assists in attempts to maintain normality. So-called "overuse syndromes," for example, refer to the damage done to alternate muscle groups or joints that were used to restore lost function (e.g., walking) and have sustained too much activity. Symptom avoidance and compensatory mechanisms may aggravate the illness and produce further losses, but they may also, if used properly, facilitate coping and continued effective functioning. Thus, compensatory behaviors, initiated in response to symptoms and altered functioning, also affect subsequent functioning. As such, these compensatory mechanisms may contribute to the self-sustaining na- ture of chronic illness. Malingering is an extreme example of a consciously motivated coping response. We all engage in malingering to some extent when, for example, we take a day off from work because we are not feeling entirely well but, in fact, are probably not too sick to continue our usual routines. Malingering in the sense of deliberately feigning sickness solely for the purpose of gain over a long period of time is probably uncommon, and experienced clinicians believe they con identify such behavior. There is no evidence that malingering is common in the SSA disability context. Most people who experience symptoms and fear they are sick visit doctors. For the chronic pain patient and for health professionals, such encounters can be frustrating because the symptom is often so very Biscuit to diagnose and treat. The absence of a diagnosable disease does not mean the absence of abnormalities, disturbances, or alter- ations in bodily functions. Thus, severe illness, illness behavior, and

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ILLNESS BEHAVIOR ED THE EXPERIENCE OF PEN 153 suffering can exist in the absence of a diagnosable disease. Effective treatment of patients with chronic pain requires that health care professionals view illness broadly and not only in terms of a narrow disease model (see Chapter 101. Some proportion of people with chronic pain use alternative care systems either in lieu of or as adjuncts to the traditional medical care system. Although it is known that muscuToskeletal complaints, includ- ing pain, are a common reason for choosing alternative therapies, particularly chiropractic care, it is not known what proportion of patients with these complaints use alternative practitioners. Some alternative practices have developed as a reaction to what a number of people perceive to be shortcomings in traditional medical care. The holistic health care and self-care movements are examples of such alternative approaches, and both of them receive considerable support from some physicians for much of their work and for their basic philosophies. The holistic health care movement emphasizes mind-body unity and positive health enhancement (Inglis and West, 1983) and integrates traditional practices of Eastern mysticism into medical programs for pain and stress relief (Benson, 19751. Holistic health care practitioners believe that analgesics should be used only minimally (Mattson, 1982), but little is known about how pain is treated in holistic health care centers. The self-care movement empha- sizes the individual's role in risk avoidance and decision making, self-monitoring and diagnosis, self-treatment, and medication. Little is known about the effectiveness of the self-care approach in ameliorat- ing chronic pain. As discussed previously, however, feeling in control of one's symptoms and illness is likely to promote better coping skills and may therefore be beneficial. Numerous folk and religious heating traditions exist in the United States. A survey of a metropolitan suburb located 130 types of alternative healers (McGuire, 19831. In the past, scholars attributed whatever effec- tiveness these forms of healing may have to suggestion, catharsis, or a placebo effect. More recent research suggests that religious and folk practices may be effective insofar as they take into account essential psychosocial factors, such as patients' explanatory models of illness, that are often neglected by conventional medicine (Kleinman and Sung, 19791. In addition, these modes may help alter the meaning of illness in such a way as to allow a different and more healthy response (Csordas, 1983; Bourguignon, 1976; Frank, 19731. These observations suggest the need for research on how the transformation of the meaning of illness may contribute to the amelioration of pain and impairment, not only in religious and folk healing but also in conventional medical care.

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154 INFLUENCES ON PEN ED PEN BEHAVIOR Two specific alternative treatment modalities deserve mention. Acupuncture, a specific technique of Chinese traditional medicine, has acquired notable publicity in the last decade, although the extent of its use is not known. Findings from clinical and experimental studies of acupuncture analgesia are inconclusive (Hu, 19741. Comparison of actual and simulated (placebo) acupuncture in patients with shoulder pain (bursitis or tendonitis) demonstrated that a positive or negative therapeutic milieu dete~ined the therapeutic response rather than the actual or simulated treatment itself (Berk et al., 19771. Several authors have discussed possible neurophysiological and psychological mechanisms (Lewith and Kenyon, 1984) and the merits of acupuncture for chronic pain (Lee, 1975; Kepes et al., 1976), but, in general, this explanatory literature leans heavily on notions of suggestibility. Good outcome studies are lacking. Finally, chiropractors, who are licensed in all 50 states and are covered by Medicare, Medicaid, and most private insurers, treat over 7.5 million patients each year (Caplan, 1984), most of whom have musculoskeletal complaints, including pain. Those who seek care from chiropractors are more likely than other people to seek care from physicians together tend to be frequent users of health care services of various types, perhaps partly because of the nature of their symp- toms (Cleary, 19821. Some observers report that chiropractic treatment is effective for short-term relief of back, neck, and other muscuTo- skeletal problems, as well as for headaches (Coulehan, 1985b; Klein and Sobel, 19851. The therapeutic milieu and the chiropractor-patient relationship are believed to be significant determinants of treatment electiveness (Coulehan, 1985a; Cowie and Roebuck, 1975; Skipper, 1978~. More research on the electiveness of chiropractic is warranted in view of the fact that so many patients use it (National Institutes of Health, 1975~. THE INFLUENCE OF PERSONALITY, FAMILIAL, AND SOCIOCULTURAL FACTORS ON ILLNESS BEHAVIOR All aspects of illness behavior can be influenced in important ways by an individual's personality, by his or her family, and by the broader soc~ocultural environment in which he or she lives. Personality and Illness Behavior Personality, chronic pain, and illness behavior interact in complex ways that are not fully understood. Both normal and abnormal

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ILLNESS BEHAVIOR ED THE EXPERIENCE OP PIN 155 influences of personality on the etiology and maintenance of symptoms and on illness behavior have been identified. In the next chapter, "Psychiatric Aspects of Chronic Pain," we explore pathological aspects of personality; here the focus is on normal tendencies that are related to personality and coping styles. Of particular importance for under- standing chronic pain is the process known as somatization. Somatization is the expression of psychosocial problems in bodily complaints. It is a communication process in which headaches, back and other pain, as well as a great variety of other symptoms all of which usually have some physiological basis become an alternative means for expressing personal problems and interpersonal tensions. In social systems and families in which psychological or social distress is neither authorized nor responded to, the somatic communication of such problems may be one of the only means by which interpersonal negotiations can encompass these issues (albeit usually indirectly) (Mechanic, 19721. Therefore, somatization is a dimension of illness behavior that holds special relevance for the appreciation of the broader context of chronic pain. It does not connote malingering or willful exaggeration. The cross-cultural literature discloses that in all societies the body serves to some extent to register, express, and negotiate life difficulties (Good, 1977; Kleinman and Kleinman, 19851. Moreover, as is true of other illness behaviors, people learn to somatize in ways that are understood by others and sanctioned as appropriate. Somatization, like language, is a learned form of expression modeled for us by parents, friends and the media. Communicating indirectly about problems in a marriage, a job, or a community via headaches, backaches, abdominal cramps, and other forms of pain usually is not only more acceptable than direct complaints, but often is more effective in obtaining help, gaining time off or away, and changing Biscuit relationships and life circumstances (Kirmayer, 19841. Somatization in this perspective is not an abnormal process but a mode of attempted adaptation to the social environment and a mode created and made available by the culture or social group, not by the individual. Preexisting symptoms may be amplified or exacerbated by the psychophysiology of stress; the unintentional mislabeling of normal physiological changes; the pres- ence of other pathology; and changes in endocrine, cardiovascular, and gastrointestinal functioning and in the autonomic nervous system (Kleinman, 19861. Somatization is common in all societies but may become even more frequent for groups and individuals under greater socioeconomic and political pressures, such as in situations of unemployment, migration

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156 INFLUENCES ON PEN ED PEN BEHAVIOR and refugeehood, and under local conditions of powerlessness and oppression (Lock, in press). From a sociocultural perspective, the sources of somatization result from a combination of the large social forces (economic system, historical circumstances, political pressures, or cultural norms) and the local social situation (family, work, or community) that places certain individuals and categories of indi~rid- uals at greater risk for disease, distress, and demoralization. Interac- tion between these social conditions and the physical and mental state of a particular person provides the basis for symptom amplification and the possibility of a resulting disability. Furthermore, as discussed elsewhere in this report, health profes- sionals and the disability system may unintentionally contribute to somatization (and other illness behaviors). By focusing narrowly on patients' bodily complaints, by ordering numerous tests to try to confirm a physical diagnosis, and by questioning the validity of patients' complaints that are not clearly accounted for by a diagnosis, health care professionals may encourage the conscious or unconscious elaboration of symptoms (Barsky, 1979) (see Chapter 101. Some ob- servers believe that disability programs may also contribute to chronic amplification of physical complaints through their eligibility require- ments that emphasize the physical manifestations of disease or injury (Katon et al., ~982, 1984) and their economic rewards (see Chapter 4~. For the patient, inappropriate medical care may result in polypharmacy, drug dependence, dangerous and unnecessary sur- gery, and illness directly attributable to medical intervention (iatro- genesis). Family Influences The family typically has a profound influence on the health, illness trajectories, symptom expression, and coping behaviors of its members. Problems and stress within the family may contribute to the develop- ment of illness and may affect its expression. Ways of coping with and communicating about illness and symptoms may be learned from other family members, and health care usually begins in the family. Several findings support the hypothesis that the family is an important factor in the etiology and maintenance of pain. There is evidence that chronic pain problems are much more frequent in some families then in others (Violon, 1985), but the reasons for this are not well understood. As discussed in Chapter 9, chronic pain patients are more likely than others in the population to have had parents or other family members with chronic pain conditions (Apley, 1975; Gently et al.,

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ILLNESS BEHAVIOR AND THE EXPERIENCE OF PAIN 157 1974; Turk et al., 19851. Clinical observations indicate that chronic pain patients are more likely to have suffered physical or emotional abuse than have others (Engel, 1959) and that chronic pain patients frequently come from families with a history of depression, alcoholism, Ink spouse abuse (Blumer and Heilbronn, 19821. There is disagreement about whether there is a genetic component that predisposes some people to chronic pain (Apley, 1975; Craig, 1980; Edwards et al., 1985; Violon and Giurgea, 1984; Christensen and Mortensen, 19751. The hypothesis that pain is an illness behavior learned in the family is less controversial than the genetic hypothesis. Two types of learning may occur modeling (copying or imitating a behavior pattern exhib- ited by another person in a similar circumstance; see Bandura, 1969) and conditioning or operant learning (in which rewards for particular behaviors reinforce them). Part of chiT6ren's socialization includes learning about appropriate illness behavior. Thus, children learn their pain responses in part from their parents' examples and rearing methods. Conditioning may occur naturally and without planning, and even without the awareness of the individual. The most fundamental concept in operant learning is that any behavior followed by an event favorable to the individual is increasingly likely to occur again when a similar situation arises. Thus, for example, the presence of reward- ing events that occur in association with pain behavior may increase the frequency and intensity of pain expression; similarly, eliminating such rewards may reduce pain expressions from the patient's behav- ioral repertoire. Rewards for pain patients often consist of attention, nurturance, sympathy, time out from unpleasant obligations, and, sometimes, financial compensation. For patients who are chronically deprived of normal attention and understanding from family members or associates, the expectation of these rewards may result in a dramatic reaction to injury and persistent and dramatic expressions of pain (Fordyce, 1976; Kremer et al., 19851. In contrast to the behavioral view of pain is the psychodynamic view that pain may serve an intrapsychic (as opposed to an interpersonal) need. According to this view, simply limiting reinforcement will not in itself solve the prob- lem. In fact, it may exacerbate it by causing the individual to feel more neglected and despondent. Sometimes pain is used as a way to avoid facing other problems in family relationships, especially between spouses. In such cases an unconscious collusion between the spouse and the pain patient may develop to maintain the pain behavior. Because so much time and energy is taken up with the pain problem, other aspects of life and relationships can be ignored. Pain and illness can also be used, often

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158 INFLUENCES ON PEN ED PEN BEHAVIOR without awareness, to avoid intimacy (Roy, 1984; Waring, 19821. In these cases, chronic pain and illness may stabilize a family that is experiencing difficulties in its interpersonal relationships or is stressed by features of its socioeconomic environment. For some families, attending to the illness of one of its members may be the only way the family can continue to function (Minuchin, 1974~. As discussed previously, somatization is a particular form of illness behavior that is likely to be reinforced in some families, especially those in which the recognition and open expression of feelings is discouraged and in which tensions among family members can only be expressed indirectly through somatic complaints. There is a great deal of literature indicating that chronic illness in one member of a family adversely affects other members as well (e.g., Lask and Matthew, 1979; Shambaugh and Kanter, 19691. Increased stress- related complaints and illnesses in the spouse and other household members have been very commonly reported after the development of chronic pain in a family member (Shanfield et al., 1979; Flor any Turk, 19851. Factors contributing to the development of such illnesses among family members may include increased responsibilities for the rest of the family when one member is incapacitated by pain, alteration in roles, or financial problems as a result of a member not being able to work. The importance of family influences on the development and main- tenance of chronic pain and pain behavior raises questions about the possibility of intervening to prevent the development of a pain problem or to help prevent an acute situation from becoming chronic. Some researchers and therapists have observed that successful therapy is very difficult to achieve when both members of a couple are heavily involved in maintaining the pain behavior (Roy, 19851. Good, well- controlled research is lacking in this area. Cultural Influences Culture is the integrated pattern of learned behavior accumulated over generations and transmitted to the young or to newcomers in a group. It is a major constituent of human personality and the orga- nized web of associations that we call community. "Culture" is an abstract way of characterizing the ways of adapting to the environ- ment that individuals share. Culture affects every aspect of behavior. It determines not only how we perceive and react to physical dysfunc- tion and personal distress but also what aspects of personal experience and behavior are understood as problems of health and illness (Kleinman, 19801.

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ILLNESS BEHAVIOR ED THE EXPERIENCE OF PEN 159 Patterns of health and illness behavior, which develop first in the family, vary for men and women and for different social classes and ethnic groups. In Western society men are expected to be stoical and willing to accept pain and discomfort; women are less inhibited in expressing their distress. Such cultural learning may account for the fact that women report more symptoms and use more medical services than men. Persons in higher social classes are more likely to become knowledgeable about health and disease and to develop preventive health patterns than their Tower-ciass counterparts. Most dramatic, however, are the variations among ethnic subcultures and the manner in which they view illness and use health services. Response to pain and distress is influenced by cultural conditioning. Although physiological pain thresholds do not appear to differ substan- tially from culture to culture (Lipton and Marbach, 1984; Garron and Leavitt, 1979), reaction to pain varies and reflects the beliefs of the group (Zola, 1966; Winsberg and Greenlick, 19671. It has been ob- served, for example, that some ethnic groups, such as Italians and Jews, are likely to be expressive about pain, and some, such as the Irish, are likely to learn a pattern of denial. Moreover, despite the similarity of response, Italians seem more concerned with pain itself, whereas Jews are more likely to worry about the significance of pain for their future well-being (Zborowski, 1952, 19691. Studies of chronic pain have tended to emphasize ethnic differences in people's reactions to pain rather than analyzing how culture shapes the experience. Understanding such differences adds to the ability of professionals to relate to patients in a meaningful way and to gain rapport with them. One study, for example, found that physicians at the Massachusetts General Hospital a Harvard-affiliated institu- tion~onfi~sed the learned emotionality of Italian patients with psy- chiatric symptoms (Zola, 19631. These patients, part of a culture that encourages the open expression of distress, often express their symp- toms with much affect. Those unfamiliar with Italian culture can confuse the cultural mode of expression (the affect associated with the report of symptoms) with the severity of the symptoms being reported, and especially careful clinical assessment is essential. Clinicians must also be aware of their own cultural prejudices and recognize that patients' pain expressions will vary. This example also illustrates the difficulty of using cultural or ethnic differences as markers because clearly it is inappropriate to generalize from group observations to the individual patient. There is a great deal of variation in all groups, and patients must be individually evaluated. Understanding cultural differences assists physicians in their individ-

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160 INFLUENCES ON PEN ED Ply BEHAVIOR ual inquiries and may help direct their questioning of patients. Yet, such information is never appropriate for prediction in individual in- stances and should not be used in this way. Clearly, culture exerts a powerful influence on pain expression and other illness behaviors. How- ever, knowledge of these influences can only serve to sensitize clinicians to inquire more carefully and listen more attentively in sorting out (to the extent possible) how much a patient's responses derive from underlying disease and how much from the sociocultural situation. CONCLUSIONS By examining various psychological, familial, social, and cultural influences on illness behavior, we have tried to illustrate the many sources of variation observed in chronic pain patients. Responses to alterations in bodily functions are consciously and unconsciously determined by a complex web of interacting influences. No one vari- able will ever fully account for the patient's experience with pain and illness. There also is no one-to-one correlation between pain behavior and disease and no single psychological profile of chronic pain patients. Social factors may strongly influence pain behavior but they are not fully determinative; culture and ethnicity may determine certain components of the pain experience, but cultural characteristics must be understood as general patterns that may or may not be relevant in the case of any particular individual. Not everyone responds in culturally predictable ways; neither can it be assumed that each social or cultural group is unique. There can be no clear-cut manual of responses to pain patients of particular sociodemographic, occupational, or cultural groups for use by health care providers or disability evaluators. Understanding that these and other characteristics can influence the perception of symp- toms, the meaning attributed to them, and how they are expressed and coped with sensitizes health care professionals and disability examin- ers to potential sources of variation. It can lead to better history taking and communication about illness and treatment, but it does not provide a formula for how to interpret and treat patients' complaints or illness behaviors (see Chapter 101. Illness behavior is useful for understanding observed differences. The fact that individuals perceive, interpret, express, and cope with their pain in different ways does not in itself address the question of who should receive disability benefits. As discussed in Chapters 2 and 4, that is ultimately a political and moral issue about which societies must decide. What this chapter suggests for the disability system is the impor-

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ILLNESS BEHAVIOR ED THE EXPERIENCE OF PEN 161 tance of conducting assessments of individual claimants that are broad enough to take account of the experience of the individual. Simply knowing a person's diagnosis is unlikely to be a good proxy for presuming a particular level of impairment. The meaning of the illness and the experience of the individual are crucial to assessing functional capacities and limitations. REFERENCES Apley, J. The Child with Abdominal Pazas. Oxford, England: Blackwell, 1975. Averill, J.R. Personal control over aversive stimuli and its relationship to stress. Psychological Bulletin 80:286-303, 1973. Bandura, A. Modelling approaches to the modification of phobic disorders. International Psychiatry Clinics 6:201, 1969. Barsky, A.J. Patients who amplify bodily sensations. Annals of Internal Medicine 91:63-70, 1979. Benson, H. The Relaxation Response. New York: Morrow, 1975. Berk, S., Moore, M., and Resnick, J. Psychosocial factors as mediators of acupuncture therapy. Journal of Consulting and Clinical Psychology 46:612~19, 1977. Better, S.R., Fine, P.R., Simison, D., Doss, G.H., Walls, R.T., and McLaughlin, D.E. Disability benefits as disincentives to rehabilitation. Milbank Memorial Fund Quar- terly 57:412~27, 1979. Blumer, D., and Heilbronn, M. Chronic pain as a variant of depressive disease: the pain-prone disorder. Journal of Nervous and Mental Disease 170:381-406, 1982. Bourguignon, E. The effectiveness of religious healing movements: A review of recent literature. Transcultural Psychiatric Research Review 13:~21, 1976. Brena, S.F., and Chapman, S.L. Chronic pain states and compensable disability: an algorithmic approach. In: Advances in Pain Research and Therapy, Vol. 7 (Benedetti, C., Chapman, C.R., and Moricca, G., eds.). New York: Raven Press, 1984. Brena, S.F., Chapman, S.L., Stegall, P.G., and Shyatte, S.B. Chronic pain states: their relationship to impairment and disability. Archives of Physical Medicine and Reha- bilitatzon 60:387-389, 1979. Caplan, R.E. Chiropractic. In: Alternative Medicines: Popular Policy and Perspectives (Salmon, J.W., ed.). New York: Tavistock, 1984. Carron, H., DeGood, D., and Tait, R. A comparison of low back pain patients in the United States and New Zealand: psychosocial and economic factors affecting severity of disability. Pain 21:77~9, 1985. Cassell, E.J. The Healer's Art. Cambridge, MA: MIT Press, 1985. Cassell, E.J. The nature of suffering and the goals of medicine. New England Journal of Medicine 306:639~45, 1982. Christensen, M.~., and Mortensen, O. Long-term prognosis in children with recurrent abdominal pain. Archives of Disorders of Childhood 50:11~114, 1975. Cleary, P.D. Chiropractic use: a test of several hypotheses. American Journal of Public Health 72:727-729, 1982. Coulehan, J.L. Adjustment, the hands, and the healing. Culture, Medicine and Psychi- atry 9:35~382, 1985a. Coulehan, J.L. Chiropractic and the clinical art. Social Science and Medicine 21:383-390, 1985b.

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