In this chapter, we turn from consideration of epilepsy as a biomedical condition and the province of health professionals to consideration of epilepsy as a negative social label and the concern of social theorists, social policy makers, and disability activists. Epilepsy has long been considered as “undesired differentness,”⁴⁴ and, as a consequence, it has involved the application of formal and informal rules and sanctions against those affected by it. Legal discrimination against people with epilepsy dates back centuries and operates still,⁵⁶ even though in many countries persons with epilepsy are now considered as having a prescribed disability and so are offered protections under the law. A significant literature traces the history of epilepsy as stigma and documents the role of stigma and discrimination in its present-day social reality. From this, it is clear that the social problems arising from a diagnosis of epilepsy and the repercussions for quality of life, especially for those in whom it proves to be clinically benign, can represent a greater challenge than its medical management. How these problems can be minimized thus represents an important aspect of the overall management of epilepsy.

Although considered the “sacred disease” by the ancient Greeks, in many ancient and primitive societies epilepsy was believed to originate from malignant causes and to be associated with sin and demonic possession. Seizures were often considered bad omens. There are references in the New Testament to epilepsy as a form of madness, and the notion of people with epilepsy as “lunatic” held widespread currency throughout the mediaeval period. Theories of epilepsy as contagion can also be traced back to antiquity.¹⁰⁸ Temkin¹⁰⁸ saw epilepsy as representing the historical struggle between magical and scientific conceptions of disease, with its medicalization in the Western world a victory for the latter. It is apparent, however, from studies of lay attitudes and beliefs toward epilepsy (see later discussion) that remnants of the former attitude continue to inform popular concepts of the condition even through to the present day. What is more, even when biomedical explanations for epilepsy emerged as triumphant during the Enlightenment,⁸² the evolution of epilepsy from “badness to sickness”²² brought with it its own associations to stigma, with studies linking epilepsy to aggressive or even criminal behavior, abnormal sexual activity, hereditary degeneracy, and a specific “epileptic personality,” all of which have had power to reinforce negative stereotypes and hence perpetuate stigma.

Although the biomedically driven concept of the epileptic personality may have been discounted in recent years, Scambler^97,98 proposed an alternative sociologic construct of “epileptic identity” resting firmly on the view of epilepsy as not just a clinical problem but also a social label. Scambler suggested that people with epilepsy react symbolically to having seizures and develop a special identity or “view of the world” underpinned by their expectations of stigma. This world view is not generally present in their lives, and is triggered by particular events; when it is triggered, however, it has the effect of predisposing them to try to cover up the signs of their condition and pass themselves off as “normal.” Scambler found that almost everyone he interviewed was distressed by receiving a diagnosis of epilepsy because “they showed a more or less clearly defined awareness that a physician’s diagnostic statement… had transformed them from ‘normal’ persons to ‘epileptics’ and this was first and foremost a stigmatising condition.” Their perceptions of epilepsy as stigmatizing were clearly anchored in what they believed to be the predominantly negative attitudes of others, which constituted a major source of anguish to them, but for which, Scambler argued, there was actually little empirical support.

Based on his analysis, he proposed a “hidden distress” model wherein the stigma of epilepsy and its repercussions for quality of life are best understood by making a distinction between “felt” and “enacted” stigma.¹⁰⁰ Felt stigma here refers to the shame of being epileptic and the fear of encountering epilepsy-linked enacted stigma, that is, enacted stigma to actual episodes of discrimination against people with epilepsy solely on the grounds of them having epilepsy. Scambler concluded that felt stigma was far more prevalent than enacted stigma, with almost everyone in his study appearing to suffer from it, even if only intermittently. It was also, in effect, a self-fulfilling prophecy inasmuch as their fear and shame about epilepsy led people to attempt to conceal their condition from others, denying themselves the opportunity to test whether the enacted stigma and discrimination they expected would, in fact, materialize.

The power of the social label of epilepsy is also illustrated in the work by Schneider and Conrad,¹⁰¹ who reported that the people they interviewed with epilepsy saw it as a kind of “moral weight” they had to carry and so was far worse than simply having seizures. Some, described as “unadjusted” to their diagnosis, appeared to be overwhelmed by the shame of having epilepsy; they saw it as precluding or limiting their access to important personal and social resources, negatively affecting different aspects of their quality of life and preventing their happiness. For some people, referred to by Schneider and Conrad as “debilitated,” it appeared that the label of epilepsy totally defined them, and their response was often to withdraw from contact with the nonepileptic world.

Goffman⁴⁴ defined stigma as “an undesired differentness.” People are stigmatized because they possesses an attribute, such
as epilepsy, that is undesired and deeply discrediting and by virtue of which they represent a discrepancy between the persons they might be and the persons they are—in Goffman’s words, between their virtual and actual social identities. Goffman identifies three different types of stigma: (a) the tribal stigmas of race and religion, (b) blemishes of individual character, and (c) what he refers to as abominations of the body. Whichever of these prevails, Goffman argues that those who are stigmatized are seen by others as “not quite human” and the legitimate target for discrimination. Goffman notes that even though people who are stigmatized may attempt to rid themselves of their “contaminated” social identity, they cannot reacquire the status of normal, only that of someone who was once “contaminated.” This problem is thrown into relief in the context of epilepsy by the fact that, in clinical terms, the condition may not be considered curable, only controllable, so that the threat of “contamination” can never be entirely eliminated. Because the possibility exists “that the offensive behaviour will recur,”² the stigma of epilepsy is irreversible and ineradicable.

Recent theoretical work on the concept of stigma has tended to emphasize two key dimensions, visibility/concealability and course/controllability,^29,65,66 both of which are highly relevant to epilepsy. Seizures, the “symptoms” of epilepsy, may be difficult to conceal and may become more salient over time depending on the clinical course of the condition and the degree to which it can be controlled. Four further dimensions, within each of which the stigma of epilepsy can be located, are disruptiveness, aesthetic aspects, origin, and peril (Table 1).⁶⁶ Seizures are clearly often highly disruptive to social interaction, causing those observing them to stand by powerlessly as “the terrified watcher.”¹¹⁶ Depending on their specific manifestations, they may also be aesthetically unpleasant to those observing them. The legacy of the old ideas about epilepsy as the product of malign forces or sinful behavior results in the issue of origin remaining ambiguous: It might be thought that people with epilepsy are somehow morally culpable for their condition. Moreover, although seizures present far greater dangers to those with epilepsy than to bystanders, the issue of peril is echoed in old ideas of epilepsy as contagion. Such ideas are still often dominant in resource-poor countries where the majority of those affected by epilepsy live, which commonly leads to their social ostracism.^21,64,83

Even in resource-rich countries, the fact that often no definitive cause for epilepsy can be found creates the possibility for continuing misattributions. As shown in a recent study by Austin et al.,⁵ 22% of American adolescents were uncertain whether epilepsy was a contagious condition.

Social theorists have commented that a reason that conditions such as epilepsy are almost universally stigmatizing is that they represent some kind of tangible or symbolic danger either to individuals or entire cultures, including physical, moral, and health dangers.^32,104 With regard to epilepsy specifically, it has been argued^1,6,98,112 that seizures can be seen as uniquely dangerous to normal social interaction both by violating cultural norms or values and by representing human weakness and unpredictability and even “anomic terror.” Recently, stigma theorists have also recognized the previously neglected role of power relations in the social construction of stigma.^73,99 Link and Phelan⁷³ commented, “it takes power to stigmatise.” The social labeling, stereotyping, separation from others, and consequent status loss that are the key elements of stigma are only relevant in a power situation that allows them to unfold; in other words, they cannot be imposed by those in positions of low power (Table 2). How does this play out in epilepsy? Certainly within the current culture of biomedicine, clinicians hold power to impose a diagnosis of epilepsy on a set of often nebulous neurologic events or symptoms and, in so doing, to legitimize a historically based negative social label and its associated stereotypes. This then allows imposition of rules and sanctions that reinforce the differentness of having epilepsy.

Because it was developed in the context of epilepsy stigma specifically, it is worthwhile reevaluating Scambler’s “hidden distress” theory in view of subsequent epilepsy-related research. Jacoby⁵⁴ revisited the concepts of felt and enacted stigma and found, like Scambler, that the former was far more commonly experienced than the latter, with few people able to recall any instances of enacted discrimination. Other research on epilepsy stigma in similar cultures supports this. It has been argued, however,⁹⁰ that much of the research reported has been concerned with identifying episodes at the hard end of enacted stigma only, for example, in relation to employment, while failing to document its more subtle expressions.

Furthermore, whereas felt stigma appears to be a much more pervasive element in North European cultures, it should not be assumed to be universally of greater relevance.⁸⁹ In some cultures, for example, sub-Saharan African ones,⁸⁷ enacted stigma may be of far greater concern, perhaps in part because the treatment gap increases the visibility of epilepsy. If we are to advance our understanding of the nature of epilepsy stigma, it will
therefore be important to develop a shared theoretical framework and set of measurement tools that allow for cross-cultural and contextual adaptation.