Epilepsy: A Comprehensive Textbook
2nd Edition
© 2008 Lippincott Williams & Wilkins
←↑→
Chapter 4
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
P.42

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.
There have been two recent studies of public attitudes toward epilepsy in developing societies, one in Tanzania and one in China. Whyte30 examined beliefs about epilepsy in three rural villages and in one urban community in each of two regions of Tanzania. The most common attribution for the cause of the disorder was supernatural powers: Sorcery by others who were jealous or envious of the victim or his or her parents, spirits, ghosts of departed ancestors, or curses put on children by their parents. Accusations of possession and witchcraft as well as actual social deprivation and ostracism were frequent, as were negative attitudes about marriage, sharing accommodations, schooling, and even physical contact. The label epileptic carries so strong a stigma that some families employed elaborate rationalizations to pretend to themselves that their children did not have epilepsy. Four out of five of the patients were not in school, either because the school insisted the child stay at home or because the parents were worried about the possibility of self-injury at school.
Lai et al.18 studied popular attitudes in Henan province, China. More than 90% of the respondents had heard of epilepsy, and three quarters knew at least one patient with the disorder. Nonetheless, more than half the sample stated that they would object to having their children associate in school with epileptics or play with them. More than half believed epileptics should not be employed in jobs alongside ordinary workers. Almost 90%, whether they were poorly educated or well educated, objected to the idea of having their children marry an epileptic.
Beliefs in witchcraft may flourish where medical care is unavailable, but patients remain concerned about confidentiality, even in industrialized countries where legislation formally protects their rights. In a UK study of patients with a recent diagnosis of epilepsy,3 70% of the patients feared that knowledge of their illness might jeopardize their employability. Stigma is still alive and well in the West.
Epilepsy and the Family
Kleinman et al.17 undertook an ethnographic study of families with epileptic members in two poor and fairly remote regions of interior China—not the China of Beijing and Shanghai. They uncovered extensive emotional, financial, and marital burdens. Stigma, loss of face, and diminished self-esteem were widespread. Ideas that attribute the cause of epilepsy to bad fate, heredity, negative geomantic forces, and the malign influences of gods, ghosts, or ancestors are all accusations about moral status. Moral blame is not applied to the patient alone but extends to the entire family. Patients with seizures routinely experience discrimination in school, the workplace, and the community. The emphasis on social control rather than patient rights in China means that pupils with epilepsy may be excluded from the classroom, workers may not be permitted to carry on with their jobs, and work units may discriminate against patients and families who request more resources for treatment.
Families feel a powerful need to protect the child with epilepsy. They are afraid the child will get no help if a seizure does occur in public because of the general fear of contamination. This results in isolating the patient at home. Overprotection of sufferers—a form of intrafamilial social control aimed at preventing epileptic family members from being shamed and from harming themselves if they have a seizure in a public place—unfortunately often becomes the chief constraint on the patient’s life chances.
The financial consequences of epilepsy can be ruinous. The economic constraints often mean the difference between receiving treatment and not, between remission and relapse. For Chinese parents, a child disabled by sickness means that they are both legally and morally responsible for care until
P.43

they or the child die or until the child marries. With marriage, the responsibility for care is shifted to the spouse; thus, there is great pressure to conceal the epilepsy and to arrange a marriage. The illness transforms the economic conditions of everyday life, using up limited resources, deepening debt, and forcing families into humiliating negotiations with creditors.
Help-seeking Behavior
Help seeking, in both rural and urban areas of China, relies on consulting traditional Chinese doctors and various folk healers, herbalists, and religious healers.17,18 Traditional healers are sought after to counteract witchcraft and sorcery by others. Alert and entrepreneurial healers take full advantage of popular suspicions. The most costly treatments were those administered by healers who were frequently consulted even where free government medical services were nominally available. Patients and families do not actually avoid biomedical treatment; too often they are unaware of it. When they do attend Western-style dispensaries, they complain that they are not given a diagnosis. This is rare among those who consult healers. Healers “explain” the disorder in terms that fit with the culture, explanations that “make sense” of the problem, even if the remedies fail to work.
Adherence to Treatment
Although controlled trials leave physicians in no doubt that anticonvulsants control seizures, their effectiveness is much less clear to individual patients and families. Families come seeking cure rather than suppression of seizures; the notion that continuous treatment is needed to prevent recurrence or that partial suppression is worthwhile when total control is not possible is alien. Patients with epilepsy know from their own experience that seizures may continue in spite of treatment and there may be no seizures during periods of no treatment. In the Kleinman17 study, more than one in four of the respondents had stopped their treatment altogether because of its perceived ineffectiveness, troublesome side effects, or costs. However, that phenomenon is not limited to “traditional” cultures.
In U.S. studies, noncompliance with drug treatment averages 30% to 40%, with a range from 20% to 70%.5 Many patients attempt to regulate their own medication. In their lexicon, they are not “noncompliant”; they are “managing” the control of their own illness on the basis of experience. They take extra medication when they anticipate “stressful circumstances” or sense that a seizure is coming on; they reduce dosage when they are feeling “flattened out” and anticipate a special need for alertness. Others suspend medication periodically to see if they still “need” it. If seizures return, they go back on drugs. They resent their dependence on medication and want to see if they can get on without them. Regulating medication is an attempt to assert control over a chronic disorder for which there is no cure.26
Does “Culture” Bar Modern Treatment?
In traditional communities, resort to more than one type of care is common. The available range of explanations includes somatic, psychosocial, hereditary, and supernatural causes. As Whyte30 points out: “[This] means that elements of neurologic and psychiatric medicine can be accepted without … excluding other possible explanations.” Western and traditional medicine can coexist peacefully, so long as neither asserts a claim to exclusivity. If the patient takes the medication regularly, it will control the fits. If patient and family choose also to participate in healing rituals, the ceremonies may offer psychologic comfort and repair social rifts without impairing drug action.
Reports from Kenya and Malawi document the success of treatment programs employing a limited pharmacopeia but enjoying strong community support because of the provision of responsive services. At both sites, seizures were fully controlled in about half the patients and reduced in another quarter. The Kenya protocol11 was carried out by primary health workers backed up by a physician. Outcome was similar to that in industrialized countries where about 70% of patients with newly diagnosed epilepsy can be controlled with a modest dose of a single antiepileptic drug.2 The Malawi study29 recruited a remarkably large clientele: More than 3,000 patients attending 45 clinical units distributed throughout the country. The medical officer enlisted the enthusiastic support of area chiefs and village representatives. Patients and families were given an explanation of disease pathogenesis (“a scar on the brain”) that justified the need for continuous treatment (“it takes a long time for the scar to heal”). Program success was based on communication channels appropriate for the culture, educating health care staff as well as patients, a simple treatment regimen, mobile clinics to make care more accessible, ensuring an adequate supply of drugs, treating without charge, and holding monthly clinics, with the patient seen by the same staff member each time.
Patient education for families in rural areas should stress safety in such simple daily tasks as drawing water from a well, cooking on an open fire, fishing, and other mundane activities. Education for the general public must address stigma and institutional discrimination. To succeed, it must enlist local opinion leaders in a continuing campaign to overcome prejudice and reintegrate patients into school, work, and community life.
Gretchen Birbeck and Roy Baskind1 held focus group discussions to develop working relationships with ten traditional healers in Zambia. The healers (N’Ganga) recognize epilepsy by means of much of the same symptoms neurologists employ, but they believe witchcraft plays a central role in provoking seizures. Treatment incorporates plant and animal products; if it fails, the healer may refer to other “more powerful” N’Ganga. If there is evidence of associated systemic illness (brain injury, malaria, high fever), they will refer patients to the hospital for Western treatment. The discussion led to an informal agreement for hospital staff to make periodic visits to the villages to see patients referred by traditional healers and for the healers to be welcome observers on the ward.
Magnitude of the Problem
Is epilepsy an important public health problem? The World Health Organization (WHO)33 estimates that there are some 50 million people with epilepsy worldwide, more than half not treated properly or not treated at all. Each year, there are some 2 million new cases, half preventable. According to World Bank estimates, epilepsy causes about 9% of the total burden resulting from mental and neurologic disease; among children from 5 to 14 years of age, it is the eighth leading cause of morbidity.32 The incidence and prevalence of epilepsy are probably several times higher in developing than in industrialized countries, particularly in regions where parasitic infections, notably neurocysticercosis, abound.23 The treatment gap—the percentage of patients with active epilepsy who are not in treatment—estimated by the WHO to be 50% the world over, is more than 90% in Paki-stan and the Philippines, and more than 80% in Ecuador.24 Applying today’s methods for prevention and treatment
P.44

could reduce the worldwide illness burden from epilepsy by 75%.
The Outcome of Untreated Epilepsy
There is a striking discrepancy between incidence and prevalence rates in low-income countries. As noted, prevalence is higher than in industrialized societies, but it is clearly not as high as incidence rates would predict, given that untreated epilepsy is a chronic disease. The reason for the failure of prevalence to rise to expected levels in view of the treatment gap could lie either in unexpectedly high remission rates, which seems unlikely,21 or in differential mortality, that is, death rates for epileptics considerably greater than those in the general population.22 Is there any evidence for high mortality?
When Dr. Louise Jilek-Aall16 returned to the Ulanga district of Tanzania, where she had established a successful treatment program from 1963 to 1971, she discovered that her former patients had been without medication for the two decades since her departure. She was able to obtain information on 164 of the more than 200 patients she had treated 30 years earlier. Two thirds were dead! Where the causes of death could be ascertained, half were due to the epilepsy itself: Status epilepticus, death during a seizure, drowning, or burns. The mortality rate among the former patients was far greater than that for the rural population of the area. In contrast, in industrialized countries, where care is widely available, the mortality rate among epileptic patients is only slightly higher than that of the general population. In the light of the “treatment gap,” these outcome data reveal a public health problem of serious magnitude.
Summary and Conclusions
Belief that epilepsy has supernatural causes is widespread among the world’s peoples. The disorder may be interpreted as the revenge of aggrieved ancestors, as punishment for sinful past behavior by the patient or the family, or as witchcraft cast upon the family by its enemies. Patients may be banished from the classroom, the playground, and the workplace, lest the disease infect others; they will be rejected as future marital partners, lest epilepsy be passed on within the family. Families may so fear public rejection that they keep their child out of view by isolating him or her at home. The financial consequences of epilepsy can be ruinous; treatments from traditional healers are often very costly.
What allows stigma to persist is the treatment gap: The 80% to 90% of patients in low-income populations who are not in care. When treatment is made accessible, and when it respects patient and family needs, is affordable in cost, and is consistent in its application, seizures can be fully controlled in half the patients and reduced in another quarter of patients in low-income societies. The integrated application of modern methods of prevention and treatment can reduce the illness burden from epilepsy worldwide by three quarters.
The World Mental Health report6 proposes a new structure for a UN World Mental Health Program. The report is designed to persuade the Consultative Committee for Management (the interagency coordinating committee) to undertake epilepsy control as a major project. It is up to health professionals to make certain that epilepsy gets a high priority on the international public health agenda.
References
1. Baskind R, Birbeck G. Epilepsy care in Zambia: a study of traditional healers. Epilepsia. 2005;46:1121–1126.
2. Brodie MJ, Dichter MA. Anti-epileptic drugs. N Engl J Med. 1996;334:168–175.
3. Chaplin JE, Lasso RY, Shorvon SD, et al. National general practice study of epilepsy; the social and psychological effects of a recent diagnosis. BMJ. 1992;304:1416–1418.
4. Cockerell OC, Johnson AL, Sander JWAS, et al. Remission of epilepsy: results from the National General Practice Study of Epilepsy. Lancet. 1995;346:140–144.
5. Conrad P. The meaning of medications: another look at compliance. Soc Sci Med. 1985;20:29–37.
6. Desjarlais R, Eisenberg L, Good B, et al. World Mental Health: Problems and Priorities in Low Income Countries. New York: Oxford University Press; 1995.
7. Dostoevsky F. The Idiot. New York: Bantam Classic; 1869/1981:218–219. Garnett C, translator.
8. Dwyer E. Stories of epilepsy, 1880–1930. In: Rosenberg C, Golden J, eds. Framing Disease: Studies in Cultural History. New Brunswick, NJ: Rutgers University Press; 1992.
9. Engel J. Surgery for seizures. N Engl J Med. 1996;334:647–652.
10. Fadiman A. The Spirit Catches You and You Fall Down. New York: Farrar, Straus, and Giroux; 1998.
11. Feksi AT, Kaamugish J, Sander JWAS, et al. Comprehensive primary care anti-epileptic drug treatment program in rural and semi-urban Kenya. Lancet. 1991;337:406–409.
12. Giel R. The epileptic outcast. East African Med J. 1968;45:27–31.
13. Gowers WR. Epilepsy and Other Chronic Convulsive Diseases. London: Churchill; 1881.
14. Hart JT. The inverse care law. Lancet. 1985;i:405–412.
15. Jilek WG. The epileptic’s outcast role and its background: a contribution to the social psychiatry of seizure disorders. J Oper Psychiatr. 1979;10:128–133.
16. Jilek-Aall L, Rwiza HT. Prognosis of epilepsy in a rural African community: a thirty year follow-up of 164 patients in an outpatient clinic in rural Tanzania. Epilepsia. 1992;33:645–650.
17. Kleinman A, Wang W-Z, Li S-C, et al. The social course of epilepsy: chronic illness as a social experience in interior China. Soc Sci Med. 1995;40:1319–1330.
18. Lai C-W, Huang X, Yen-huei CL, et al. Survey of public awareness, understanding and attitudes toward epilepsy in Henan province, China. Epilepsia. 1990;31:182–187.
19. Levy JE, Neutra R, Parker D. Life careers of Navaho epileptics and conversion hysterics. Soc Sci Med. 1979;13B:391–398.
20. Reynolds EH. Changing views of prognosis of epilepsy. Getting better all the time. BMJ. 1990;301:112–114.
21. Sander JWAS. Some aspects of prognosis in the epilepsies: a review. Epilepsia. 1993;34:1007–1016.
22. Sander JWAS. Epidemiology and the natural history and course of epilepsy. International Congress: Epilepsy–A Developing World. Beijing, China; 1996.
23. Senanayake N, Roman GC. Epidemiology of epilepsy in developing countries. Calendar of Meetings, Epilepsia. 1996;37:419–420.
24. Shorvon SD, Farmer PJ. Epilepsy in developing countries: a review of epidemiological, sociocultural, and treatment aspects. Epilepsia. 1988;29(Suppl 1):S36–S54.
25. Temkin O. The Falling Sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology. 2nd ed. Baltimore: The Johns Hopkins University Press; 1971:1–10.
26. Trostle JA. Medical compliance as an ideology. Soc Sci Med. 1988;27:1299–1308.
27. Turner V. The Forest of Symbols. Ithaca, NY: Cornell University Press; 1967.
28. Vickrey BG, Hays RD, Rausch R, et al. Outcomes in 248 patients who had diagnostic evaluations for epilepsy surgery. Lancet. 1995;346:1445–1449.
29. Watts AE. A model for managing epilepsy in a rural community in Africa. BMJ. 1989;298:805–807.
30. Whyte SR. Family experiences with mental health problems in Tanzania. Acta Psychiatr Scand. 1991;(Suppl 364)83:77–111.
31. Wilson JVK, Reynolds EH. Translation and analysis of a cuneiform text forming part of a Babylonian treatise on epilepsy. Med Hist. 1990;34:185–198.
32. World Development Report Investing in Health. Washington, DC: Oxford University Press for the World Bank; 1993.
33. World Health Organization. Guidelines for the Primary Prevention of Mental, Neurological and Psychosocial Disorders: 3. Epilepsy. WHO/MNH/MND 93.23. Geneva: World Health Organization; 1993.
←↑→