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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 abnormal—rather 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 elements—symptom 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.
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Representative terms from entire chapter:
illness behavior
