How do people understand and think about (“mentally represent”) health and illness? What rules govern the way people create, maintain, and modify conceptions of their own and others’ health status? How do the cognitive processes and structures of illness representations affect individuals’ emotional and behavioral responses to health threats? Such questions form the core of health psychologists’ study of illness representations.
Western middle-class people use “illness” to refer to a biological condition of the body. However, medical anthropologists and sociologists have sensitized health psychologists to the cultural and role-related meanings packed into concepts of illness. Learning that one has arthritis, diabetes, or hypertension has effects that go beyond merely registering an item of information about one’s biological condition. In part, these effects arise because medical and everyday language are not equivalent. The quasi-medical field of patient education fulfills a need to translate between these “dialects,” but it assumes that the language of medical professionals is the standard by which to judge patients’ understanding. Psychologists who study illness representations, on the other hand, believe that studying the lay person’s understanding of illness is worthwhile in its own right because that understanding (no matter how medically accurate) motivates people’s health-related activities.
Components of Illness Representations
Research beginning in the mid-1980s verified that people’s mental representations of illness include the following elements:
- Identity, a set of one or more bodily symptoms (e.g., fever and diarrhea) and an identifying label (e.g., flu) that names the illness.
- Timeline, beliefs about the temporal course of the illness. Is it an acute problem that will be resolved by treatment or by the passage of a few days? Or is it a long-term, chronic illness that will worsen over time? Is it a condition that will wax and wane periodically, going through cycles?
- Cause, beliefs about why the illness has occurred. Is it because of contact with an infected family member or environmental toxins? Has it been brought on by overwork or other strains, which have undermined one’s resistance to pathogens? Is it the result of bad genes?
- Controllability, beliefs about the curability or at least the manageability of the illness. For infectious diseases with which Western middle-class people are most familiar, curability beliefs are strong. For many chronic conditions, the major issue is how to manage the illness—to retard its progress, to make lifestyle adjustments, and so on.
- Consequences, people’s answers to such questions as, What will be the effect on me of this illness? Will it prevent me from completing a work assignment or joining the family vacation? Will it require mutilating surgery? Will it force me to retire earlier than I planned? Some consequences may be immediate; others may be anticipated over the long run.
Changing any component of the representational system will influence other components. A cough that was initially identified as a bronchitis episode is transformed as it persists for several weeks. Because the timeline has changed, causal explanations and potential cures that applied to an acute episode are no longer plausible. The person wonders and worries about what the cough signifies—both its identity and its consequences.
Consequences of Illness Representations
Health psychologists are interested in illness representations because they assume that these motivate and direct coping with health problems. This assumption has been vindicated by research connecting patients’ mental representations of chronic diseases, such as hypertension, diabetes, and arthritis, with adherence to treatment. For example, persons who are newly diagnosed with high blood pressure tend to drop out of treatment if they think they have an acute disease. Because hypertension has no reliable symptoms, such patients cannot use symptom remission to judge whether treatment was successful. Instead, they believe they have been cured by temporary changes in diet and a course of medication. Individuals who stick with treatment overwhelmingly believe it has had beneficial effects on such felt symptoms as headaches. These patients readily acknowledge that “most people” cannot detect variations in blood pressure, thereby conforming to the accepted medical view; however, they regard themselves as exceptions to this general rule. Moreover, they report varying self-treatment according to whether they are experiencing symptoms. Such findings highlight the centrality of the “identity” component in illness representations and indicate that illness representations are grounded in people’s somatic experience. They also illustrate the symmetry rule: People expect symptoms to denote an illness entity, and they expect illnesses to be accompanied by symptoms. In contrast to hypertension, symptoms of unregulated diabetes are readily evident. As a result, “controllability” beliefs play a very important role for persons with diabetes. Individuals who believe treatment is effective in controlling symptoms are more likely to maintain their regimen than those who regard treatment as ineffective.
Besides the symmetry rule, people apply other common-sense heuristics to understanding symptoms and illness. For example, they are less likely to seek treatment for ambiguous symptoms occurring in conjunction with short-term life stresses than when stress is prolonged or symptoms are obviously medical. The stress—illness rule shows that “stress” may serve as an alternative explanation for symptoms. However, this rule may be applied in conjunction with stereoypes about what kind of person is most likely to exhibit symptoms. For example, people are less likely to recommend treatment for women who report chest pains and concurrent life stress than for men who report identical conditions. Given the growing incidence of heart disease among women, misapplication of a gender stereotype in informal diagnosis could have catastrophic effects.
Similar to the tendency to discount illness explanations for symptoms associated with short-term life stress, the aging—illness rule leads to delays in seeking treatment for symptoms that are attributed to normal aging processes. As individuals age, their sense of vulnerability to disease grows, but they also feel less confident that illness is controllable. One result is a reduced likelihood of seeking treatment unless symptoms are very severe.
How universal is the five-component model of illness representations? Examinations of illness descriptions written during the 17th and 18th centuries suggest that it has some historical generality, at least in Western Europe. As to its applicability to non-Western and/or non-middle-class persons, we do not know. Most researchers have concentrated on extending the five-component model to disease entities that, by definition, presuppose a Western medical framework. One criticism of research on the five-component model is that persons whose beliefs about illness causation include the supernatural or retribution may be reluctant to voice views that deviate from the biologically oriented norm. Further validation of the model can address such shortcomings. Only a few psychologists are actively studying illness representation in Africa or Asia, and even these tend to be in urban and Western-influenced settings. It is difficult to see how this latter problem will be overcome in the foreseeable future.
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