Sociocultural Perspectives

Leon Eisenberg

Introduction

The clinical course of epilepsy is the result of two vectors: The pathophysiology of the disease process and the social context in which the patient lives. The objective of this chapter is to outline the sociocultural factors. A century ago, when there were no effective treatments, clinical course was primarily a function of the underlying biology of the disease. Today, the very successes of medicine and surgery in seizure control²^,⁹^,²⁸ have made the sociocultural factors that govern access to care major determinants of illness trajectory.

In respect to health and illness, the term sociocultural focuses on three aspects of social life: First, the set of beliefs by which the members of a community understand the workings of the world they inhabit (and, in particular, the theories they hold about the cause and cure of disease); second, the methods, the techniques, and the organizational means by which care is provided to those who are judged to be sick; and third, the class structure of the community, which governs the likelihood of becoming ill, as well as the probability of receiving care. The world over, those with the fewest resources (in both industrialized and developing countries) are at the greatest risk of becoming ill and are the least likely to receive health care, a phenomenon that the British physician Julian Tudor Hart¹⁴ has termed “the Inverse Care Law.”

When Western physicians think of culture, they are likely to associate it with the exotic: The beliefs held and the practices observed among peoples remote in space or time from modern Western “civilization,” which is assumed to be “rational” and “scientific.” This cultural chauvinism is a major handicap in analyzing health problems in developing countries. It overlooks the problematic nature of the “cultural” beliefs of our own Western medical community; some of what we take to be true is firmly evidence based; much of it is based on no more than the oral tradition physicians call “clinical experience.” Attributing “belief” to the “natives” and “rationality” to the “doctors” is a source of grievous error. Misused, the concept of “culture” can obscure our recognition of the financial and organizational barriers to care and can tend to blame the victims for their own misfortune.

A particularly tragic instance has been described in eloquent language by Anne Fadiman.¹⁰ The book’s title, The Spirit Catches You and You Fall Down, is an approximate translation of the term for epilepsy among the Hmong peoples, who attribute the disorder to spirit possession and believe it should be treated with animal sacrifices. The Hmong parents, recent refugees from Laos, had no understanding of Western medicine; the doctors in California had no knowledge of Hmong culture. Misunderstanding between physicians and the parents and conflicts between the physicians and the Hmong shaman the parents consulted resulted in brain death even though all of those involved acted from humane intentions.

Medical understanding is always incomplete; it changes as new paradigms arise. Not so long ago, doctors shared the prevailing pessimism about epilepsy and employed desperate, though unavailing, remedies. As recently as 1968, Rodin wrote that four-fifths of all patients with epilepsy are likely to go on to a chronic seizure disorder, as cited by Reynolds.²⁰ He was echoing Gowers’s¹³ view that “the spontaneous cessation of the disease was an event too rare to be reasonably expected.” Recent studies reveal completely reversed odds. Population-based data reveal that no more than 20% to 30%, rather than 80%, of newly diagnosed patients develop chronic epilepsy. The National General Practice Study of Epilepsy⁴ reported that 3-year remission rates were 87% and 5-year rates 71% for idiopathic epilepsy.

Doctors have done far worse than cast a gloomy prognosis. Nineteenth-century physicians dosed patients with bromides, opium, and snake venom extract; they drilled holes in the skull and removed ovaries. As these radical ministrations failed, physicians invoked hereditary explanations that focused on degeneracy and made epileptics into moral lepers.⁸ Epilepsy was equated with madness and criminality. Those medical opinions lent credence to early 20th-century immigration laws that restricted the entrance of epileptics into the United States—laws not changed until 1965. By the late 19th century, discouraged and frustrated by the failure of even desperate treatment measures, the medical community concluded that epileptics would be “best off” in isolated, out-of-sight communities where, in the euphemistic language of the day, they would receive “the best possible care and treatment.” One of the first such institutions, Craig Colony for Epileptics, opened in southwestern New York state in 1896; it did not change its name until 1967.⁸ This history is not cited to judge our predecessors with the wisdom of hindsight but to remind us of how widespread ignorance and superstition were in our Western medical culture until phenobarbital and phenytoin revolutionized care in the second third of this century.

Historical Belief about Epilepsy

Epilepsy is an ancient disease that has been “explained” for as long as it has been perceived. Its manifestations invite arcane theories of its causes and its meanings. Seizures are dramatic, public, and frightening. They occur with unpredictable frequency in unexpected places. The forced cry, the loss of consciousness, the fall, the twitching, and the foaming at the mouth suggest possession by a spirit. The antiquity of the recognition of the disease is attested to by an Akkadian text from the second millennium BC. It describes someone whose neck turns left, whose hands and feet become tense, whose eyes stare wide open, whose mouth froths, and who loses consciousness.²⁵
A Babylonian text dated from the middle of the first millennium BC deals with epilepsy, “the falling disease.” Its manifestations were attributed to the work of demons and ghosts that “possessed” the victim during the seizure.³¹

Epilepsy was the subject of the first monograph on a single disease.²⁵ The Hippocratic text On the Sacred Disease was written about 400 BC. It records the struggle between “scientific” and “magic” interpretations of epilepsy. Epilepsy, the author asserts, is no more divine than are other diseases. The book attacks magicians, wizards, and charlatans, who called the disease “sacred.” The alleged divine character, the author insists, is nothing more than a blindfold to conceal ignorant and fraudulent practices.

Although belief that the patient is possessed by an evil demon has been the common response, seizures can also be interpreted as divine possession, particularly if they are heralded by auras of ecstasy, such as those that enrapture Myshkin in The Idiot⁷:

“Suddenly in the midst of sadness, spiritual darkness and oppression, there seemed at moments a flash of light in his brain, and with extraordinary impetus all his vital fores suddenly began working at their highest tension. The sense of life, the consciousness of self, were multiplied 10 times at these moments which passed like a flash of lightning. His mind and his heart were flooded with extraordinary light; all his uneasiness, all his doubts, all his anxieties were relieved at once; they were all merged in a lofty calm, full of serene, harmonious joy and hope. But these moments, these flashes, were only the prelude of that final second … with which the fit began. That second was, of course, unendurable…. “What if it is a disease?” he decided at last. “What does it matter that it is an abnormal intensity, if the result, if the minute of sensation, remembered and analyzed afterward in health, turns out to be the acme of harmony and beauty, and gives a feeling, unknown and not divined until then, of completeness, of proportion, of reconciliation, and of ecstatic devotional merging in the “highest synthesis of life?”… That it really was “beauty and worship,” that it really was the “highest synthesis of life” he could not doubt…. At the very last conscious moment, he had time to say to himself clearly and consciously, “Yes, for this moment, one might give one’s whole life!”

Beliefs about Epilepsy in Traditional Societies

Belief in supernatural causes is widespread in traditional societies today: The revenge of aggrieved ancestors; visitation by the devil; ghosts; or the evil eye, witchcraft, and bewitchment. Sorcery is a way of trying to explain the relationship between experienced misfortune and the envy, conflict, hatred, and malice in the community.²⁷ In Ethiopia, patients may be treated as lepers and banished.¹² Among the Navaho, epileptics were suspected of having committed incest.¹⁹ Informants in Kenya and Ecuador reported that they would not let their children play with known epileptics, nor would they let their children marry into such families.²⁴ Because of the frequency with which burns follow seizures in cooking areas, epilepsy is known as “the burn disease” in some societies.²⁹

Where epilepsy is considered to be infectious, patients are shunned. Ideas of pollution and contamination create enormous difficulties for patients and families. What is the origin of the belief in the infectious and toxic nature of the epileptic’s saliva? Jilek¹⁵ suggests that it stems from a conflation of epilepsy with rabies, given that rabies manifests itself by agitation, spasms, and terminal generalized convulsions with frothing and foaming. The saliva of rabid patients is indeed infectious. The hypothesis that the confusion between epilepsy and rabies accounts for the belief in contagion is supported by the correlation in Africa between the regions where rabies is endemic and those where belief in the infectiousness of epilepsy is prominent.

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