Stigma, epilepsy, and quality of life
Introduction
Epilepsy is the world’s most common serious neurological disorder, affecting some 50 million individuals worldwide. In the developed world, magical explanations of epilepsy have given way to biomedical ones, so that the clinical and social realities of epilepsy are considerably more favorable for those in the developed world than for those in developing countries. Nonetheless, misconceptions about epilepsy and negative stereotypes persist [1], and people with epilepsy still must struggle with its stigma.
Historically, epilepsy has been a stigmatizing medical disorder par excellence, and Dell [2] argued that, even in contemporary worlds and times, its stigma remains real and serious, limiting the quality of life of those affected by it. Support for Dell’s observation has been found in research linking the stigma of epilepsy to increased rates of psychopathology and reduced social interactions and social capital of those with the condition. In this article, the nature of the stigma of epilepsy is considered, together with the way in which this stigma appears to influence the psychological well-being and broader quality of life (QOL) of people with epilepsy. Before presenting the relatively scant evidence for the latter, brief consideration is given to theories of the nature of stigma and how well they represent the situation of the person with epilepsy.
Section snippets
Epilepsy as a deeply discrediting condition
The starting point for any discussion of stigma must be Goffman’s [3] definition of it as “an attribute that is deeply discrediting.” Goffman asserted that an individual who is stigmatized possesses “a trait that can obtrude itself upon attention and turn those of us whom he meets away from him, breaking the claim his other attributes have on us.” Both Goffman and his sociological contemporary Becker [4] described stigma as deriving from a conceptualization by society of what constitutes
Stigma and QOL
Empirical evidence to support the putative relationship between stigma and QOL for people with epilepsy is slight. The qualitative studies by West [44], Schneider and Conrad [24], [26], [30], and Scambler [21] are now more than 20 years old, but there is some more recent quantitative work using stigma scales that helps shed further light on this subject.
Stigma and quality of care
One further issue regarding the stigma of epilepsy that may impact the QOL relates to the provision of health and social care and the attitudes of the professionals engaged in them. Weiss and Ramakrishna [85] argued that because there is either no or reduced investment in service provision and research for conditions that are seen as stigmatizing, important repercussions may ensue in terms of health and social policy. Recent surveys in the United Kingdom [86], [87] have suggested that medical
Conclusions
Trostle [22] has written that, “to have epilepsy is to open oneself to the full force of past and contemporary social prejudice and misunderstanding.” Undoubtedly, many people with epilepsy do just that, and epilepsy remains a moral weight they have to carry and a defining feature of their identity. Though research has indicated that neither informal stigma nor formal discrimination is inevitable for those with epilepsy, they remain a matter of considerable concern for many people. Felt stigma
Acknowledgments
My thanks to my colleague, Dr. Gus Baker, whose comments on this manuscript were invaluable, and to Professor Steven Schachter, who invited me to contribute to the symposium at which this paper was first presented. Also, thanks to all those people with epilepsy who have taken part in the various studies of its impact on quality of life in which I have been involved.
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