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Somatization, Hysteria, or Incompletely Explained Symptoms?

Harold Merskey

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In Review
Somatization Disorder: A Practical Review

François Mai

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Explaining Medically Unexplained Symptoms
Laurence J Kirmayer, Danielle Groleau, Karl J Looper, Melissa Dominicé Dao

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Sexual Medicine: Why Psychiatrists Must Talk to Their Patients About Sex

Ronald WD Stevenson

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The Persistence of Folly: Critical Examination of Dissociative Identity Disorder. Part II. The Defence and Decline of Multiple Personality or Dissociative Identity Disorder
August Piper, Harold Merskey

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Original Research Relation Between Prenatal Maternal Mood and Anxiety and Neonatal Health
Shaila Misri, Tim F Oberlander, Nichole Fairbrother, Diana Carter, Deirdre Ryan, Annie J Kuan, Pratibha Reebye

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Preparing Psychiatry Residents for the Certification Exam: A Survey of Residency and Exam Experiences
David Crockford, Alana Holt-Seitz, Beverly Adams

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Design and Feasibility of a New Cognitive-Behavioural Therapy Course Using a Longitudinal Interactive Format
Mark A Lau, Greg M Dubord, Sagar V Parikh

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Acceptability and Disintegration Rates of Orally Disintegrating Risperidone Tablets in Patients With Schizophrenia or Schizoaffective Disorder

Pierre Chue, Ron Welch, Carin Binder

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Ethics Case Book of the American Psychoanalytic Association
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The Practical Management of Personality Disorder
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Leo Uzych


Becoming a Therapist: What Do I Say, and Why?
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Mirtazapine for Treatment of Nausea Induced by Selective Serotonin Reuptake Inhibitors

Effects of Propofol on Electroconvulsive Therapy Seizure Duration

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Road Rage: Old Wine in a New Bottle

Reply: Ancient Wine but Still Potent?

The Effect of Quetiapine on Cannabis Use in 8 Psychosis Patients With Drug Dependency

In Review

Explaining Medically Unexplained Symptoms

Laurence J Kirmayer, MD1, Danielle Groleau, PhD2, Karl J Looper, MD3, Melissa Dominicé Dao, MD4

 

Patients with medically unexplained symptoms comprise from 15% to 30% of all primary care consultations. Physicians often assume that psychological factors account for these symptoms, but current theories of psychogenic causation, somatization, and somatic amplification cannot fully account for common unexplained symptoms. Psychophysiological and sociophysiological models provide plausible medical explanations for most common somatic symptoms. Psychological explanations are often not communicated effectively, do not address patient concerns, and may lead patients to reject treatment or referral because of potential stigma. Across cultures, many systems of medicine provide sociosomatic explanations linking problems in family and community with bodily distress. Most patients, therefore, have culturally based explanations available for their symptoms. When the bodily nature and cultural meaning of their suffering is validated, most patients will acknowledge that stress, social conditions, and emotions have an effect on their physical condition. This provides an entree to applying the symptom-focused strategies of behavioural medicine to address the psychosocial factors that contribute to chronicity and disability.

(Can J Psychiatry 2004;49:663-672)

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Highlights

  • The term “medically unexplained symptoms” names a social and clinical predicament, not a specific disorder. Hence, it is not a replacement for the concept of somatoform disorder but, rather, a way of drawing attention to a situation in which the meaning of distress is contested.

  • In a community survey of 2400 people, 10.5% reported at least 1 medically unexplained symptom in the past year. The most common unexplained symptoms were musculoskeletal pain, ear, nose, and throat symptoms, abdominal pain and gastrointestinal symptoms, fatigue, and dizziness.

  • Many cultural traditions provide sociosomatic theories based on ethnophysiological theories linking social conditions with physical symptoms and illness. These allow most patients to generate explanations for their symptoms. However, these explanations may not fit with biomedical notions.

  • When the bodily quality and cultural meanings of their suffering are acknowledged, most patients with medically unexplained symptoms accept that stress and emotions affect their physical condition. This provides an entree for the application of behavioural medicine techniques to reduce symptoms and disability.

Key Words: medically unexplained symptoms, somatization, somatoform disorders, functional somatic syndromes, cultural diversity, primary care, symptom attributions, explanatory models of illness

Résumé : Expliquer les symptômes médicalement inexpliqués

Symptoms that have no definite medical diagnosis are common in all areas of primary care as well as in specialty medicine (1). This lack of explanation reflects the limits of medical knowledge, available technology, and the epistemological difficulties of assigning a clear cause to subjective complaints like pain and fatigue, which may have no objectively measurable correlates and may change rapidly over time in quality and intensity (2). Contrary to common clinical assumptions, there is a poor correlation between the nature or extent of an injury and the resulting pain and suffering (3). Nor can the degree of pain or distress a person is experiencing be accurately gauged from facial expression or behaviour (4). These gaps between physiology, bodily sensations, and symptom experience reflect the complexity of the central nervous system (CNS) processes that translate physiological perturbations into experience (5). Improved understanding of the central mediation of pain and other symptoms may provide a more complete explanation for otherwise puzzling symptoms and allow clinicians to design effective symptomatic interventions.

While some of the ambiguities of diagnosis owing to limited knowledge or technology may be expected to fall away with advances in medical science and technology, fundamental epistemological constraints on what can be known in the clinical context will persist (6). Knowledge gained from epidemiological or experimental studies involves group averages and processes that can be detected above the “noise” of individual variability. Diagnostic systems are based on ideal typical cases abstracted from the complexity and diversity of illness experience. Clinical medicine works in the opposite direction to apply general knowledge to the specific life circumstances of an individual patient, and it may not be possible in any given case to confirm associations that can be demonstrated statistically with large populations.

Despite these inherent limitations to medical explanation, clinicians and patients hold to the hope that every troubling symptom can be adequately explained and treated. When clinical intervention succeeds in eliminating symptoms, the lack of a clear explanation may be relatively unimportant. When treatment fails and symptoms persist, explanations may offer some reassurance and consolation, promote coping and resilience, and allow the person to plan realistically for the future. When both treatment and explanation fail, suffering is augmented by the anxiety of ambiguity and uncertainty—an anxiety that may be felt by clinicians as well as patients.

Clinicians have developed a range of strategies for deflecting the threat to medical competence posed by medically unexplained symptoms (2,7,8). Generally, these involve shifting the blame from the limits of medicine to some characteristic of the patient. Given our psychologically oriented culture, it is an easy slide from declaring a symptom unexplained to attributing it to specific psychological traits or states of the patient. This gives meaning to distress, locates the responsibility for care within the system of medical specialization, and neutralizes the threat to professional competence posed by the ambiguity or resistance to treatment of persistent symptoms.

This is the backdrop against which we can understand the significance of the category of somatoform disorders. By diagnostic fiat, idiopathic pain becomes pain disorder, unexplained fatigue becomes undifferentiated somatoform disorder, and other inexplicable forms of distress find a home under the capacious rubric of somatoform disorder not otherwise specified. Behind these “atheoretical” labels lies an older history of constructing psychological explanations for suffering. The validity of this strategy must be judged in terms of its benefit for patients.

Medically Unexplained Symptoms in the Clinic and the Community

Surveys in primary care have reported prevalence rates of medically unexplained symptoms varying from 15% to 30% of consultations (9–11). These rates depend on whether the definition of medically unexplained symptoms is based on assessment of current symptoms by the physician or lifetime history of multiple symptoms (as in the DSM-IV diagnoses of somatization disorder). The World Health Organization (WHO) Cross-National Study in Primary Care confirmed this high prevalence across 15 different sites around the globe and documented the strong association between depression, anxiety, and somatic complaints (12,13). However, studies in primary care make it clear that patients with a history of multiple somatic complaints, with current somatic presentations of depression and anxiety, or with hypochondriacal worries constitute 3 substantially nonoverlapping groups that may be lumped together under the broad category of medically unexplained symptoms (9,14).

Community surveys also find a high prevalence of medically unexplained symptoms in the general population, although the more severe and persistent forms identified by DSM-IV somatization disorder are rare. Of course, the extent to which a symptom is medically unexplained is hard to judge when the only data source is patient recollection. The usual epidemiological instruments (for example the Diagnostic Interview Schedule [DIS] or the Composite International Diagnostic Interview [CIDI]) rely on a probe flow sheet that assumes comparable access to medical care and, hence, may not give valid results in cross-cultural studies (15). The CIDI ascertains whether each symptom received a diagnosis by a physician. Ideally, the responses are reviewed by a clinician to determine their plausibility as medical explanations. However, this assessment of plausibility depends on the extent to which local popular and medical explanations are viewed as credible by the reviewer. For example, over the course of the last 2 decades, fibromyalgia (FM) has evolved from a marginal diagnosis to a widely accepted medical explanation for widespread musculoskeletal aches and pains. Similarly, many patients and some clinicians accept “low blood pressure” as an explanation for weakness, dizziness, and fatigue even when it is not possible to verify the diagnosis (16). Other diagnoses, such as chronic fatigue syndrome (CFS) or Gulf War syndrome, remain highly contested (17).

We used a novel method to examine the prevalence of medically unexplained symptoms in the community (18). In a telephone survey of a stratified random sample of 2400 residents of a culturally diverse inner-city neighbourhood, we asked respondents about their experience of a list of 15 common somatic symptoms during the past 12-months and then asked: “In the last 12 months, have you had any symptom for which a doctor could not find an explanation?” This was followed by a request to describe the symptom. We collected additional information on sociodemographics and health care utilization and also used the 12-item version of the General Health Questionnaire (GHQ), a measure of psychological distress. Overall, 10.5% of respondents reported at least one unexplained symptom in the last 12 months. As shown in Table 1, the most common symptoms reported as medically unexplained were similar in both sexes. Similar symptoms have been found in other studies of primary care (19,20).

Table 1  Most frequent medically unexplained symptoms reported in a community sample (n = 2400) 

 

Total with MUS
(n = 231) 


Men
(n = 94) 


Women
(n = 137) 


Rank 

Symptom 

Symptom 

Symptom 

Musculoskeletal pain 

30.3 

Musculoskeletal pain 

27.7 

Musculoskeletal pain 

31.4 

Abdominal pain and other GI symptoms 

17.7 

Abdominal pain and other GI symptoms 

21.2 

Abdominal pain and other GI symptoms 

15.3 

ENT symptoms 

7.8 

ENT symptoms 

11.7 

ENT symptoms 

5.1 

Fatigue 

3.9 

Urogenital 

4.3 

Dizziness 

4.4 

Dizziness 

3.5 

Fatigue 

3.2 

Fatigue 

4.4 

ENT = ear, nose, and throat; GI = gastrointestinal; MUS = medically unexplained symptoms 

The sample included 5 groups with different ethnocultural background and migration history: anglophone Canadian- born; francophone Canadian-born; and immigrants from the Caribbean, Vietnam, and the Philippines. There was no difference across ethnocultural groups overall, but when results were stratified by sex, Vietnamese men were significantly more likely to report unexplained symptoms than were women (18.3% vs 7.2%). This is in marked contrast to the usual finding that medically unexplained symptoms are more common among women than men (21) and may reflect the high rates of exposure to trauma in this sample, which includes many refugees, combined with male reticence to divulge psychosocial and emotional distress that could help explain the symptoms.

In a logistic regression model, the only predictor of unexplained somatic symptoms was the GHQ score, confirming a link with psychological distress—though not resolving the causal direction (Table 2). People who reported a medically unexplained symptom in the past 12 months made significantly more visits to a physician (mean 3.9, SD 4.2 vs mean 2.9, SD 3.3; t = 3.32, P < 0.001) but not to specialists, including psychiatrists or other mental health practitioners.

Table 2  Logistic regression model of correlates of reporting a medically undiagnosed symptom in the last 12 months (n = 1491)  

 

Odds Ratio 

95%CI 

Age 

1.00 

0.99 to 1.0 

Sex (female) 

0.94 

0.66 to 1.33 

Marital status (not married) 

0.99 

0.70 to 1.40 

Education (> high school) 

1.10 

0.74 to 1.64 

Employment (> 6 months) 

0.96 

0.66 to 1.38 

Immigrant status 

1.30 

0.95 to 1.90 

General Health Questionnaire 

1.2*** 

1.15 to 1.32 

 ***P < 0.001 

While respondents in our survey reported that a doctor could not explain their symptoms, we do not know whether they were actually offered an explanation that they later rejected as unsatisfactory or whether they simply did not remember. Studies employing the CIDI are affected by the vagaries of memory, so there is a poor correlation over one year in the reporting of lifetime medically unexplained symptoms (22). At the same time, studies in primary care make it clear that physicians often do not present clear explanations for symptoms or for the level of distress and disability that patients experience (23).

Explaining Medically Unexplained Symptoms: A Psychophysiological Perspective

Despite the fact that many patients do not receive a medical explanation for their distress, it is not difficult to generate plausible physiological explanations for most common somatic symptoms. Research has demonstrated many physiological mechanisms by which medically unexplained symptoms may be produced (24). A network of interacting systems has bidirectional communication with the CNS, which mediates the effects of psychosocial factors on the production of physical symptoms (25). Evidence for CNS modulation of symptom experience challenges simplistic models of symptom origins. This can be illustrated with the example of pain but applies equally to other common somatic symptoms such as dizziness, fatigue, or gastrointestinal complaints.

Early theories of pain conceptualized a unidirectional flow of pain signals from peripheral nerves to the CNS as a passive recipient of sensory input (26). Current theories attribute an active role to the CNS in the experience of pain through sensory, affective, and cognitive processing, as well as through several descending pathways involved in peripheral pain modulation (3,27). The implication of this paradigm shift is that pain is as much the product of spinal cord mechanisms and CNS activity that may be associated with emotional distress or social conflict as it is the consequence of actual injury or tissue damage. The involvement of central processes in all pain experience undermines efforts to distinguish between psychogenic and organic pain (28–30).

Current pain theory has implications for many disorders characterized by widespread or localized pain. Pain disorders may share common CNS mechanisms involving disruption of normal antinociceptive responses to sensory stimulation (31), while specific areas of physiological dysfunction may differ, depending on the body systems involved. For example, brain- imaging studies have identified the anterior cingulate cortex (ACC) as having a role in the regulation of pain in irritable bowel syndrome. The failure to activate the ACC in response to painful visceral stimuli may be part of a cycle that produces the symptoms of irritable bowel syndrome (32). These effects are mediated by a brain–gut axis that maintains bidirectional communication between the brain and the intrinsic neural networks of the gut. Dysregulation of this system could account for changes in bowel activity that give rise to symptoms of abdominal discomfort and altered bowel patterns in irritable bowel syndrome (33).

Functional brain imaging studies provide clues to CNS mechanisms involved in other unexplained conditions, such as conversion disorder (34). In a single case study of a patient with conversion motor paralysis of the lower limb, altered functioning was observed in the anterior cingulate and orbitofrontal cortex (34). The authors proposed that these brain areas may inhibit the effects of prefrontal systems that mediate intentional motor behaviour. Although anecdotal, this type of research may lead to the characterization of neurophysiological processes associated with dissociation, which is often cited as the mechanism of conversion disorder (34).

Many common symptoms may reflect normal responses to stress—increased muscle tension, autonomic arousal, and dysregulation—or the short- and long-term effects of hypothalamic–pituitary–adrenocortical axis activation. Stress responses involve essential adaptive mechanisms that allow an individual to respond to a wide range of threats. However, chronic or intense activation of neuroendocrine and autonomic systems may have damaging effects. Dysregulation of autonomic and endocrine function may take subtle forms that are hard to detect clinically. This kind of dysfunction of the stress response has been proposed as a possible explanation for symptoms of CFS and FM. Other effects may occur via the activity of the immune system (35), which interacts with the neuroendocrine system through various mechanisms and includes the suppression of immune activity by endogenous corticosteroids. Altered sleep patterns may also be involved in the generation of widespread pain seen in FM and CFS, as suggested by experiments involving healthy adults in whom sleep interruption led to the production of symptoms similar to those seen in FM (36).

Common forms of physiological dysregulation brought on by everyday stress and the wear and tear of aging result in a background “white noise” of somatic symptoms. Various cognitive-perceptual processes may contribute to amplifying these symptoms, increasing their intensity and the associated distress and disability (5). These psychological processes apply to all symptoms, whatever their origin, and it is only their relative contribution that may be distinctive for some patients and types of problem (37–39). These same mechanisms may account for the number and intensity of somatic symptoms that accompany depression and anxiety (40).

While it is not possible to provide a definitive pathophysiology for most functional somatic symptoms or syndromes, there is sufficient research to identify plausible physiological mechanisms that may be more proximal to the manifest physical symptoms than are the psychological factors that contribute to somatic amplification. Physiological explanations for illness may be consistent with patients’ experience of being physically ill and need not ignore the role of psychological and emotional factors. Such explanations also provide an entree to behavioural medicine interventions with proven efficacy in reducing the impact of common functional somatic symptoms and syndromes (41).

Locating the Meaning of Distress: Cultural Idioms of Distress and Unexplained Symptoms

In the social context of medical consultation, clinicians often label somatic symptoms with no medical explanations as somatization and attribute them to psychological conflicts or deficits (6). Locating symptom origins in psychological processes within the patient tends to ascribe responsibility, and even moral blame, in ways that patients understandably resist (8). Illness attributed to physical causes tends to be viewed as a condition with onset beyond the person’s control and thus evokes compassion and concern. In contrast, psychological disorders tend to be viewed as controllable and reversible and, hence, elicit less compassion and may evoke anger and a desire for distance from the afflicted person (42).

As Kleinman has shown, many systems of medicine include sociosomatic theories that recognize that the origins of somatic distress may lie within the social context (43). Sociosomatic theories typically understand the health and well-being of the person to be closely tied to the maintenance of the social order. Illness may result from social conflict or disorder, and suffering is both a reflection of social ills and a call for redress. Locating the etiology of symptoms in the social world, as opposed to the individual body, opens up other interpretive possibilities for patients and clinicians (44).

To explore personal and cultural understandings of medically unexplained symptoms, we collected and analyzed the illness narratives of individuals in the community who participated in the epidemiological survey described above (18). Potential subjects were identified through the survey as having had either medically unexplained symptoms in the past year, 4 or more common somatic symptoms in the past year, or symptoms of emotional distress on the GHQ. We recontacted these individuals and invited them to take part in extensive face-to-face interviews about their illness experience.

Of the 18 immigrants from Vietnam intensively interviewed this way, 10 provided narratives referring to either phong tap or uat u’c, which are culture-related explanatory models for their somatic symptoms (45). Of the remaining 8 respondents, 6 had no specific folk label or diagnosis to account for their overall symptoms; however, their narratives did provide explanatory models or prototypes that made sense in the context of Vietnamese popular theories of health. Finally, 2 participants differed from the others in that they could provide neither a folk explanatory model nor a biomedical explanation for their symptoms.

Phong tap provided an explanation analogous to the lay use of the term rheumatism among Euro-Canadians and offered a socially acceptable way to describe bodily aches and pains that were attributed to depletion of energy, cold, and environmental effects. People who used the term uat u’c interpreted their medically unexplained symptoms as resulting from a predicament that involved indignation over a social injustice that could not be denounced because of the social status hierarchy and the importance of maintaining social harmony. Thus, while both phong tap and uat u’c provided cultural explanations for medically unexplained symptoms, they differed in the ways in which they were used socially. Phong tap functioned as what anthropologists have called a “cultural idiom of distress” (46).

Cultural idioms of distress serve to normalize experience, drawing attention to particular social conditions or predicaments that are readily understood by others (47). As such, they typically avoid the social stigma attached to psychiatric disorders. For example, the Vietnamese in our study who spoke of aching joints in terms of phong tap related their physical symptoms to experiences of cold and wind, understood in Vietnamese ethnophysiological theory to cause a wide range of physical illnesses. Exploring the circumstances that generated the cold and wind, however, traced a wider circle of meanings related to the subjects’ migration experience, past traumas, and ongoing adjustment to Canada, as well as to intergenerational struggles and their own social marginalization. Thus talk about common physical symptoms served as a socially acceptable vehicle to explore the links among a wide range of significant concerns.

In contrast, uat u’c involved a sociosomatic theory that linked specific types of social predicaments involving injustice with a wide range of potentially severe somatic symptoms and ailments. Respondents knew about this linkage and used it to explain their chronic symptoms, even though their symptoms remained unexplained by the biomedical framework used in the clinical encounter. However, because explicitly naming the social situation that engendered uat u’c might be threatening to the social order, respondents were not able to talk about it readily to others in their family, community, or social network. In some cases, they noted that the research interviewer was the first person to whom they had divulged the details of their illness. It was safe to do so, precisely because the interviewer was not Vietnamese and not part of the same status hierarchy.

Interestingly, at the end of the ethnographic interviews, all the respondents who were able to provide a meaning for their symptoms—whether by referring to a biomedical diagnosis, folk label, or explanatory model—spontaneously reported that the interview process had helped them. In contrast, participants who could provide neither a biomedical nor a culturally based explanation for their symptoms did not seem to enjoy this therapeutic benefit. This is consistent with research showing the beneficial effects of narrating distress (48). Having the opportunity to create meaning for symptoms by exploring their characteristics, context, and antecedents seems to relieve distress for many individuals.

This beneficial effect of narrating distress is supported by observation of those participants who were not able to provide a coherent explanation for their medically unexplained symptoms. Their narratives were characterized by the repeated invocation of multiple possible causes for their ailment and frequent requests that the interviewer endorse or confirm these explanations. Their narratives were circular or repetitive and also seemed disorganized, in part because participants often did not finish sentences but also because they visited and revisited different explanatory options without ever settling on a satisfactory account. At the end of the interview, these respondents summed up their experience by saying that they still did not know why they had the problem, sometimes adding that they felt misled and let down because they had come to the interview hoping to find an explanation.

Our work on illness narratives in the community suggests that most people who report having symptoms that their physicians cannot explain can provide culturally based explanations for their own symptoms. While these explanations may not accord with biomedical theory, they are sufficient to give meaning to distress and to guide help-seeking and health care utilization. However, even when given ample time to produce a narrative in the nonclinical research interview setting, some people remained incapable of generating a coherent explanation. Their symptoms were both medically unexplained and culturally unexplained, which placed the problem in a semantic no man’s land outside social consensus and collective meaning. These people may have secrets or concerns they cannot divulge to another, even after several hours of supportive interaction. They may also lack the conceptual frameworks or affective regulation needed to make links between their social predicament, personal suffering, and bodily symptoms. Investigation of such individuals in their social environment over time will help clarify the extent to which the lack of explanation reflects psychological deficit, defensiveness or denial, social positioning, impression management, or basic issues of trust.

The Contest of Interpretations

The brevity and narrow focus of the typical clinical encounter in primary care or specialty medicine does not allow most patients enough time to construct a meaningful narrative about their symptoms. Clinicians tend to control the agenda of the encounter and view it as their responsibility to come up with a good explanation for symptoms. Plausible explanations are available for many symptoms, but the mediating processes often cannot be measured in the clinical setting or for an individual patient. Hence, proposing or accepting an explanation depends on a certain openness and explanatory generosity toward the patient.

Recent qualitative studies have examined both how doctors and patients actually try to explain these symptoms and issues in the patient–doctor relationship related to this negotiation of meaning. Medical explanations include psychophysiological mechanisms and the impact of social stressors, but because of the prevalent and pervasive mind–body dualism that underlies the cultural concept of the person, explanations that invoke purely psychological processes tend to be given a problematic personal and social meaning (6–8).

A study of primary care physicians in the UK found that they all thought of medically unexplained symptoms as a product of psychological distress and decreased tolerance of benign somatic symptoms. Social problems were cited as a frequent etiology, in concert with lack of insight on psychological issues, stigma associated with mental health problems, and personal gain from the sick role (49). Patients were perceived as having control over the events that led to their distress and as controlling the clinical encounter, and physicians expressed feelings of powerlessness, frustration, inadequacy, and sometimes resentment toward them. At the same time, physicians recognized the importance of the doctor–patient relationship in ensuring quality of care, trust, and acceptance of the doctor’s explanation.

In a Swedish study, most general practitioners also explained symptoms as the result of psychological distress and mentioned a range of contributing factors, including patients’ psychological fragility, lack of medical knowledge, unrealistic expectations of medicine, abrupt or traumatic change in social status, secondary gain from sick leave, poor social supports, challenging life events, and the emphasis placed on productivity and performance in contemporary society (50). Here again, physicians reported feeling controlled by these patients and often frustrated, powerless, and insecure, although these reactions tended to lessen with experience.

Shorter reviewed historical changes in the explanation of common somatic syndromes to illustrate how medical models become incorporated into lay discourse over time and modify patients’ clinical presentations and explanations of symptoms (51). In a US study, Helman found that primary care patients suffering from chronic “psychosomatic” illness had multicausal explanations for their disorder that linked physical, psychological, and social aspects of their life (52). Explanatory models for the etiology of their symptoms included emotions (described as “pathogens attacking vulnerable organs”), their own personalities, hereditary or acquired weakness, bodily organs behaving autonomously, difficult interpersonal relationships, and stress. These explanations also referred to prototypes based on their own prior illness experience, the experience of others, folk knowledge, and information from mass media.

More recent qualitative research with patients presenting unexplained symptoms that had been investigated for more than 12 months revealed that most of their accounts could not be categorized according to biomedical models and ideas (53). In fact, most explanations were incomplete and unsatisfactory to the patients; they remained fluid, with the repetitive consideration of alternative possibilities. The most prevalent explanations included concepts of disease as an alien autonomous entity, social difficulties and stressors (which constituted an external source of emotional distress), internal imbalance of a bodily process (or a discrepancy between the body’s capacity and the demands made of it), and internal nervous and psychological processes—often referred to as “nerves”—in which moods or thoughts exacerbated the symptoms (53). Patients also contrasted their detailed knowledge of symptoms (obtained through direct sensory experience) and their predicament with the incomplete and limited nature of medical knowledge and technology. They described feeling doubted or rejected by their physician’s minimization or denial of their symptoms and troubled by the absence of a label for their condition. The doctor’s words were scrutinized, weighed, compared, and criticized before being accepted or rejected. Acceptable explanations included those that provided a tangible mechanism, validated symptoms, legitimated suffering without blaming patients, and provided opportunities for self-management (54). However, even in the absence of a workable explanation, patients valued in itself their physician’s engagement with the problem.

A detailed analysis of narratives from patients attending a British neurology clinic who had chronic and severe unexplained symptoms found their accounts to be disorganized or chaotic and difficult to follow (55). While patients resisted psychological explanations, their narratives were replete with references to psychological mechanisms, conflict, and distress. Nevertheless, the absence of a clear diagnosis made it harder for them to make sense of their illness, to achieve a legitimate sick role, to access support and resources, and to take action on their illness.

These studies of patients’ and physicians’ retrospective accounts of unexplained symptoms are consistent with research on doctor–patient interaction. A recent UK study that examined the interactions occurring during consultations in general practice found that most patients provided explanations for their symptoms but that these accounts were not taken up by their physicians, who instead offered reassurance, normalization of symptoms, evidence of negative test results, or no explanation at all (23). These clinical responses seemed to be counterproductive, as patients then tended to insist on the severity of their distress, report new symptoms, or refer to other external authorities to support the validity of their concerns. Patients’ acceptance of reassurance was better when physicians provided a more tangible explanation that addressed the patients’ concerns. Psychosocial and physical factors could then be linked and a productive discussion initiated. These results point to the potential role of physicians in amplifying somatic symptoms, as well as in the subsequent investigations or treatments. The clinician’s validation of the patient’s suffering is crucial for the successful negotiation and coconstruction of meaning by patient and physician.

This research also challenges the widespread assumption that unexplained symptoms are equivalent to hidden psychological problems and that these patients commonly reject psychological explanations (56). Most patients provided clear cues during the consultation about the presence of important psychosocial issues. These cues included expressing worry or concern about the uncertainty of their diagnosis, explicitly mentioning psychological, social, and stress-related difficulties, and linking their symptoms to their lifestyle. Most physicians disregarded these cues and ignored the patient’s psychosocial issues; they preferred to focus on a narrow biomedical task and offered perfunctory reassurance that failed to meet the patient’s evident concerns.

Another assumption challenged by this UK study is that patients with medically unexplained symptoms pressure their physician for physical investigations and somatic treatment (57). No patients openly requested investigation or medical referral, nor did they contradict or directly challenge their physician’s authority. However, patients did apply pressure in less direct ways, describing graphically the intensity of their symptoms and their impact on daily life, providing a possible biomedical explanation that could prompt investigation, expressing emotional distress related to their symptoms, and appealing to an external authority to validate their symptoms and their need for medical attention. Physicians tended to respond by focusing on symptomatic treatment. Patients indirectly challenged physicians’ treatment focus and management by offering additional information or alternative diagnoses, and by emphasizing the ineffectiveness of previous treatments. This combination of pressure for, and constraint on, engagement seems to be the source of the frustration and impotence felt by physicians. Why physicians respond with somatic interventions is not entirely clear, but reasons may include physicians’ avoidance of emotional distress, lack of strategies to engage patients’ psychosocial problems, and attempts to maintain authority in the face of ambiguous conditions by mobilizing the technology of biomedicine. Training general practitioners to address the psychological dimensions of medically unexplained symptoms and to manage their own feelings of incompetence may improve the outcome for patients who already acknowledge a psychological aspect to their distress (58).

Conclusion

The term medically unexplained symptoms names a predicament, not a specific disorder. Hence, it is not a replacement for the concept of somatoform disorder but, rather, a way of drawing attention to a social situation in which the meaning of distress is contested. Many explanations to make sense of ambiguous conditions are available to clinicians and patients. As summarized above, psychophysiological theories provide plausible explanations for most common symptoms and would trace their origins to the disturbed regulation of physiological systems, brought on or aggravated by psychosocial stress, conflict, loss, or limitations. Most symptoms are explained not by structural lesions but by perturbations or disturbances in physiological function. Hence, the utility of the terms “functional somatic symptoms” and “functional somatic syndromes,” where functional is understood not in opposition to organic but as an explicit reference to such posited disorders of physiological functioning or regulation (59). Subtle disturbances of function may be beyond the ability of current clinical examinations and laboratory tests to confirm. Such disorders of regulation may come and go as homeostatic physiological systems are perturbed and right themselves.

In addition to the widely accepted impact of stress on bodily functioning, many cultural traditions provide explicit theories linking social conditions with illness. This social causation may occur without explicit psychological mediation, both because social events have many direct effects on physiology and because they may be thought about in terms of nonpsychological constructs drawn from culture-specific notions of the person. Such sociosomatic explanations do not fit well within a narrow biomedical framework that seeks only to identify and correct physiological perturbations, nor are they subsumed by psychological explanations that emphasize the inner theatre of the mind.

Despite the availability of plausible explanations, patients and clinicians often do not settle on a mutually acceptable account. In a small number of cases, this is due to some incoherence or inconsistency in the patient’s illness narrative. This incoherence or inconsistency may reflect psychological defensiveness, unspeakable social predicaments, or the disorganizing effects of intense distress. Much further work is needed to understand the cognitive, affective, and interpersonal processes that give rise to these chaotic illness narratives.

More often, the failure to find a mutually satisfying explanation seems to reflect a breakdown in doctor–patient communication. Even if an explanation can be generated, its ability to satisfy patient and physician depends on a process of negotiation, which requires dialogue. Although often skewed by the clinician’s assumption that the biomedical account is sufficient, illness explanations must take into account patient concerns and the social implications of the diagnostic label; simply giving a label—without offering meaningful reassurance and a plan of action consistent with the patient’s background knowledge and understanding—will not go far to resolve the patient’s concerns. The lack of such negotiated understanding may account for the fact that some patients in our community survey reported that their symptoms remained medically unexplained, even though the doctor offered them an explanation.

When the bodily quality and cultural meanings of their suffering are recognized, most patients will acknowledge that stress and emotions have an effect on their physical state (60). Focusing on the psychological and social factors that exacerbate symptoms may provide a rationale for behavioural medicine interventions that can improve adaptation. However, this focus can also add to the social stigma experienced by patients with unexplained symptoms (61). Patients with medically unexplained symptoms and syndromes are often uncomfortable with psychiatric labels for their problems. This discomfort stems from concern about having their experience of physical distress stigmatized and dismissed as mental or emotional illness, as well as from frustration with a health care system that may have little to offer in terms of effective treatment or psychosocial support. Focusing on the psychological dimensions of distress involves trade-offs between the efficacy of specific interventions and the negative meaning attached to psychological problems in many social contexts. These trade-offs must be evaluated, not only in the clinical context where they determine the immediate acceptability of treatment but also in the wider social sphere where they may have unexpected consequences for patients.

A cultural perspective draws attention to the social contexts within which symptoms arise, are given meaning, and are managed. The relevant cultural background for explaining unexplained symptoms includes the patient’s family and local world, together with global mass media and popular culture. The dynamics of the doctor–patient relationship are played out against a backdrop of social, cultural, and epistemological assumptions that are built into our diagnostic concepts and categories. One of the basic tasks of the clinical encounter is the coconstruction of meaning for distress. To achieve this, clinicians must widen their focus from the translation of symptoms and signs into biomedical diagnosis to the facilitation of communication. Only through dialogue, negotiation, and cultural exchange can clinicians find explanations that make sense to patients and their families.


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Author(s)

Manuscript received and accepted July 2004.

1. James McGill Professor and Director, Division of Social and Transcultural Psychiatry, McGill University and Director, Culture and Mental Health Research Unit, Institute of Community and Family Psychiatry, Sir Mortimer B Davis–Jewish General Hospital, Montreal, Quebec.

2. Assistant Professor, Department of Psychiatry, McGill University and Staff Investigator, Culture and Mental Health Research Unit, Institute of Community and Family Psychiatry, Sir Mortimer B Davis–Jewish General Hospital, Montreal, Quebec.

3. Assistant Professor, Department of Psychiatry, McGill University and Staff Investigator, Culture and Mental Health Research Unit, Institute of Community and Family Psychiatry, Sir Mortimer B Davis–Jewish General Hospital, Montreal, Quebec.

4. Postdoctoral MSc student, Division of Social and Transcultural Psychiatry, McGill University and Culture and Mental Health Research Unit, Institute of Community and Family Psychiatry, Sir Mortimer B Davis–Jewish General Hospital, Montreal, Quebec.

Address for correspondence: Dr LJ Kirmayer, Culture and Mental Health Research Unit, Institute of Community and Family Psychiatry, Sir Mortimer B Davis–Jewish General Hospital, 4333 Cote Ste Catherine Road, Montréal, QC H3T 1E4

e-mail: laurence.kirmayer@mcgill.ca

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