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 individual'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, difficulty 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 sensations and assign meaning to them, often without being aware of it (Pennebaker, 1982).

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 perception of a sensation as a symptom of ill health involves categorizing 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 meaning to symptoms become intertwined with values and beliefs and influence each other (Cassell, 1985).

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, 1983). As individuals think about their pain, it tends to become more intense and disabling, whereas distraction 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 awareness 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 symptoms 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, 1985).

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, 1982). 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 contrast, it has been observed that patients who believe that they have little or no control over their health and well-being work less effectively 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 development 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 membership (McKinlay, 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 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-Christian 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 treatment of chronic pain (Cassell. 1982).

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-seeking behaviors. Particular meanings may result in more or less productive 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 behaviors—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. Movements 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., 1984). 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.

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 inevitably 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 nature 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 can 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 difficult to diagnose and treat. The absence of a diagnosable disease does not mean the absence of abnormalities, disturbances, or alterations in bodily functions. Thus, severe illness, illness behavior, and 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 10).

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 musculoskeletal complaints, including 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, 1975). 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 emphasizes 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 ameliorating 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 healing traditions exist in the United States. A survey of a metropolitan suburb located 130 types of alternative healers (McGuire, 1983). In the past, scholars attributed whatever effectiveness 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, 1979). 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, 1973). 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.

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, 1974). Comparison of actual and simulated (placebo) acupuncture in patients with shoulder pain (bursitis or tendonitis) demonstrated that a positive or negative therapeutic milieu determined the therapeutic response rather than the actual or simulated treatment itself (Berk et al., 1977). 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 too—they tend to be frequent users of health care services of various types, perhaps partly because of the nature of their symptoms (Cleary, 1982). Some observers report that chiropractic treatment is effective for short-term relief of back, neck, and other musculoskeletal problems, as well as for headaches (Coulehan, 1985b; Klein and Sobel, 1985). The therapeutic milieu and the chiropractor-patient relationship are believed to be significant determinants of treatment effectiveness (Coulehan, 1985a; Cowie and Roebuck, 1975; Skipper, 1978). More research on the effectiveness of chiropractic is warranted in view of the fact that so many patients use it (National Institutes of Health, 1975).

Personality and Illness Behavior

Personality, chronic pain, and illness behavior interact in complex ways that are not fully understood. Both normal and abnormal 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 understanding 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, 1972). 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, 1985). 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 difficult relationships and life circumstances (Kirmayer, 1984). 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 presence of other pathology; and changes in endocrine, cardiovascular, and gastrointestinal functioning and in the autonomic nervous system (Kleinman, 1986).

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 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 individuals at greater risk for disease, distress, and demoralization. Interaction 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 professionals 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 10). Some observers believe that disability programs may also contribute to chronic amplification of physical complaints through their eligibility requirements that emphasize the physical manifestations of disease or injury (Katon et al., 1982, 1984) and their economic rewards (see Chapter 4). For the patient, inappropriate medical care may result in polypharmacy, drug dependence, dangerous and unnecessary surgery, and illness directly attributable to medical intervention (iatrogenesis).

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 development 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 than 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; Gentry et al., 1974; Turk et al., 1985). 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, and spouse abuse (Blumer and Heilbronn, 1982). 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, 1975).

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 exhibited 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 children'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 rewarding 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 behavioral 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., 1985). 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 problem. 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 without awareness, to avoid intimacy (Roy, 1984; Waring, 1982). 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, 1969). 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 and Turk, 1985). 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 maintenance 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, 1985). 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 organized web of associations that we call community. ''Culture'' is an abstract way of characterizing the ways of adapting to the environment that individuals share. Culture affects every aspect of behavior. It determines not only how we perceive and react to physical dysfunction and personal distress but also what aspects of personal experience and behavior are understood as problems of health and illness (Kleinman, 1980).

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 lower-class 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 substantially 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, 1967). It has been observed, 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, 1969).

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 institution—confused the learned emotionality of Italian patients with psychiatric symptoms (Zola, 1963). These patients, part of a culture that encourages the open expression of distress, often express their symptoms 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 individual inquiries and may help direct their questioning of patients. Yet, such information is never appropriate for prediction in individual instances and should not be used in this way. Clearly, culture exerts a powerful influence on pain expression and other illness behaviors. However, 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.