Epilepsy and social identity: the stigma of a chronic neurological disorder

Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people. In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma.

[1]  R. Rosenthal,et al.  Pygmalion in the Classroom: Teacher Expectation and Pupils' Intellectual Development , 1968 .

[2]  G. Joachim,et al.  Living with chronic illness: the interface of stigma and normalization. , 2000, The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres.

[3]  A. Hung,et al.  Public Awareness, Attitude, and Understanding of Epilepsy in Hong Kong Special Administrative Region, China , 2002, Epilepsia.

[4]  K.,et al.  Epilepsy in Pakistan: Stigma and Psychosocial Problems. A Population‐Based Epidemiologic Study , 1997, Epilepsia.

[5]  E. Reynolds,et al.  The ILAE/IBE/WHO Epilepsy Global Campaign History , 2002, Epilepsia.

[6]  G. Krauss,et al.  “The Scarlet E” , 2000, Neurology.

[7]  C. Bagley Social Prejudice and the Adjustment of People with Epilepsy , 1972, Epilepsia.

[8]  L. Jilek‐Aall,et al.  Psychosocial study of epilepsy in Africa. , 1997, Social science & medicine.

[9]  G. Albrecht,et al.  The Handbook of Social Studies in Health and Medicine , 2003 .

[10]  M. Iivanainen,et al.  Public Awareness and Attitudes Toward Epilepsy in Finland , 1980, Epilepsia.

[11]  K. Peltzer Perceptions of epilepsy among black students at a university in South Africa. , 2001, Curationis.

[12]  J. Austin,et al.  Stigma in the lives of adolescents with epilepsy: a review of the literature , 2003, Epilepsy & Behavior.

[13]  Tobias Loddenkemper,et al.  Lateralizing signs during seizures in focal epilepsy , 2005, Epilepsy & Behavior.

[14]  A. Oun,et al.  Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study , 2000, Seizure.

[15]  J. Gutteling,et al.  Previous Experiences with Epilepsy and Effectiveness of Information to Change Public Perception of Epilepsy , 1986, Epilepsia.

[16]  S. Al-Adawi,et al.  Patient’s perspective on epilepsy: self-knowledge among Omanis , 2003, Seizure.

[17]  E. Goffman Stigma; Notes On The Management Of Spoiled Identity , 1964 .

[18]  E H Reynolds,et al.  The prognosis for seizure control in newly diagnosed epilepsy. , 1984, The New England journal of medicine.

[19]  D. Tuckett An Introduction to medical sociology , 1977 .

[20]  K. Meador,et al.  The neuropsychology of epilepsy: what are the factors involved? , 2004, Epilepsy & Behavior.

[21]  M. Eliasziw,et al.  Burden of Epilepsy: The Ontario Health Survey , 1999, Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques.

[22]  Ladonna L. Rush Affective reactions to multiple social stigmas , 1998 .

[23]  J. Dovidio,et al.  Stigma of psychological therapy: Stereotypes, interpersonal reactions, and the self-fulfilling prophecy. , 1986 .

[24]  P. Allotey,et al.  'He hath the French pox': stigma, social value and social exclusion. , 2005, Sociology of health & illness.

[25]  Graham Scambler,et al.  Being epileptic: coming to terms with stigma , 1986 .

[26]  Bruce G. Link Understanding labeling effects in the area of mental disorders : An assessment of the effects of expectations of rejection , 1987 .

[27]  G. Scambler Re-framing Stigma: Felt and Enacted Stigma and Challenges to the Sociology of Chronic and Disabling Conditions , 2004 .

[28]  S. Fiske,et al.  The Handbook of Social Psychology , 1935 .

[29]  R. Fitzpatrick,et al.  The Experience of Illness , 1985 .

[30]  J. Collings,et al.  Epilepsy and well-being. , 1990, Social science & medicine.

[31]  A. Jacoby Epilepsy and the quality of everyday life. Findings from a study of people with well-controlled epilepsy. , 1992, Social science & medicine.

[32]  B. Major,et al.  The social psychology of stigma. , 2005, Annual review of psychology.

[33]  P. Halász,et al.  Changes in Public Attitudes Toward Epilepsy in Hungary: Results of Surveys Conducted in 1994 and 2000 , 2001, Epilepsia.

[34]  B. Aldenkamp,et al.  Social Functioning, Psychological Functioning, and Quality of Life in Epilepsy , 2001, Epilepsia.

[35]  Josemir W Sander,et al.  The characteristics of epilepsy in a largely untreated population in rural Ecuador. , 1994, Journal of neurology, neurosurgery, and psychiatry.

[36]  R. Kleck Self-Disclosure Patterns of the Nonobviously Stigmatized , 1968, Psychological reports.

[37]  T. Williams Teacher prophecies and the inheritance of inequality. , 1976 .

[38]  Bruce G. Link,et al.  Stigma and its public health implications , 2006, The Lancet.

[39]  Deborah Buck,et al.  Quality of Life of People with Epilepsy: A European Study , 1997, Epilepsia.

[40]  E. R. Bickerstff The Falling Sickness , 1975 .

[41]  J. Collings Psychosocial Weil‐Being and Epilepsy: An Empirical Study , 1990, Epilepsia.

[42]  David G. Armstrong An Outline of Sociology as Applied to Medicine , 1980 .

[43]  J. Eccles,et al.  The Impact of Mothers' Gender-Role Stereotypic Beliefs on Mothers' and Children's Ability Perceptions , 1992 .

[44]  C. Crandall,et al.  Physical illness stigma and social rejection. , 1995, The British journal of social psychology.

[45]  A. Kleinman,et al.  The social course of epilepsy: chronic illness as social experience in interior China. , 1995, Social science & medicine.

[46]  G. D'Amico,et al.  Natural History and Prognosis , 1987 .

[47]  E. E. Jones Social stigma: The psychology of marked relationships , 1984 .

[48]  A. Wyler,et al.  Psychosocial Predictors of Psychopathology in Epilepsy , 1990, British Journal of Psychiatry.

[49]  J. Douglas,et al.  Theoretical perspectives on deviance , 1973 .

[50]  G. Scambler,et al.  Generating a model of epileptic stigma: the role of qualitative analysis. , 1990, Social science & medicine.

[51]  A. Jacoby,et al.  Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. , 1994, Social science & medicine.

[52]  R. Merton The Self-Fulfilling Prophecy , 1948 .

[53]  M. Hills,et al.  New Zealand Community Attitudes toward People with Epilepsy , 2002, Epilepsia.

[54]  D. Chadwick,et al.  Randomised study of antiepileptic drug withdrawal in patients in remission , 1991, The Lancet.

[55]  J. Ablon The nature of stigma and medical conditions , 2002, Epilepsy & Behavior.

[56]  C. Cornaggia,et al.  Public Attitudes Toward Epilepsy in Italy: Results of a Survey and Comparison with U.S.A. and West German Data , 1985, Epilepsia.

[57]  Jennifer Crocker,et al.  Stigma: Introduction and overview. , 2000 .

[58]  J. Laidlaw,et al.  A Textbook of Epilepsy , 1993 .

[59]  J. Gunn,et al.  Epilepsy in prisons: A diagnostic survey , 1969, British medical journal.

[60]  H. Tröster Coping with the stigma of epilepsy , 1998 .

[61]  Bruce G. Link,et al.  A modified labeling theory approach to mental disorders : an empirical assessment , 1989 .

[62]  R. Reis Epilepsy and self‐identity among the Dutch , 2001, Medical anthropology.

[63]  G. Baker,et al.  The Stigma of Epilepsy: A European Perspective , 2000, Epilepsia.

[64]  K. Kempner,et al.  The Stigma of Epilepsy as a Self‐Concept , 1980, Epilepsia.

[65]  D. Scott,et al.  Psychiatric Aspects of Epilepsy , 1978, British Journal of Psychiatry.

[66]  S. Shorvon,et al.  Early prognosis of epilepsy. , 1982, British medical journal.

[67]  P. Shafer,et al.  Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population , 2002, Epilepsy & Behavior.

[68]  H. Tröster Disclose or Conceal? Strategies of Information Management in Persons with Epilepsy , 1997, Epilepsia.

[69]  M. Dam,et al.  Public Attitudes Toward Epilepsy in Denmark , 1992, Epilepsia.

[70]  B. Weiner,et al.  An attributional analysis of reactions to stigmas. , 1988, Journal of personality and social psychology.

[71]  R. Ziegler Epilepsy: Individual Illness, Human Predicament and Family Dilemma. , 1982 .

[72]  R. Baumann,et al.  Kentuckians' Attitudes Toward Children with Epilepsy , 1995, Epilepsia.

[73]  R. Letz,et al.  The association of stigma with self-management and perceptions of health care among adults with epilepsy , 2003, Epilepsy & Behavior.

[74]  G. Baker,et al.  The Clinical Course of Epilepsy and Its Psychosocial Correlates: Findings from a U.K. Community Study , 1996, Epilepsia.

[75]  J. Pryor,et al.  A Social-Psychological Analysis of HIV-Related Stigma , 1999 .

[76]  B. Gallhofer Epilepsy and Its Prejudice , 1984 .

[77]  Gerhard Falk,et al.  Stigma: How We Treat Outsiders , 2001 .

[78]  G. Baker,et al.  Cross‐cultural Differences in Levels of Knowledge about Epilepsy , 2003, Epilepsia.

[79]  R. Perry,et al.  Reactions to stigmas among Canadian students : Testing an attribution-affect-help judgment model , 1998 .

[80]  A. Berg,et al.  The risk of seizure recurrence following a first unprovoked seizure , 1991, Neurology.

[81]  P. Conrad,et al.  Another Piece to an Unfinished Puzzle@@@Having Epilepsy: The Experience and Control of Illness. , 1983 .

[82]  Kathy Charmaz,et al.  Experiencing Chronic Illness , 2000 .

[83]  H. Meinardi,et al.  ILAE/WHO “Out of the Shadows Campaign” Stigma: does the flag identify the cargo? , 2002, Epilepsy & Behavior.

[84]  L. Ferini-Strambi,et al.  Epilepsy in institutionalized patients with encephalopathy: clinical aspects and nosological considerations. , 1993, American journal of mental retardation : AJMR.

[85]  G. Baker,et al.  Public Knowledge, Private Grief: A Study of Public Attitudes to Epilepsy in the United Kingdom and Implications for Stigma , 2004, Epilepsia.

[86]  B. Hermann,et al.  Psychopathology in epilepsy : social dimensions , 1986 .

[87]  E. Durkheim,et al.  Rules of Sociological Method , 1964 .

[88]  L. Westbrook,et al.  Applying stigma theory to epilepsy: a test of a conceptual model. , 1992, Journal of pediatric psychology.

[89]  D. Coulter Epilepsy and mental retardation: an overview. , 1993, American journal of mental retardation : AJMR.

[90]  R. Hicks,et al.  Attitudes of Major Employers Toward the Employment of People with Epilepsy: A 30‐Year Study , 1991, Epilepsia.

[91]  B. Weiner,et al.  On sin versus sickness. A theory of perceived responsibility and social motivation. , 1993, The American psychologist.

[92]  G. Albrecht,et al.  Social distance from the stigmatized. A test of two theories. , 1982, Social science & medicine.

[93]  Victor Ottati,et al.  From Whence Comes Mental Illness Stigma? , 2003, The International journal of social psychiatry.

[94]  K. Charmaz,et al.  Loss of self: a fundamental form of suffering in the chronically ill. , 1983, Sociology of health & illness.

[95]  I. Rektor,et al.  The trend in public attitudes in the Czech Republic towards persons with epilepsy , 2002, European journal of neurology.

[96]  A. Jacoby,et al.  Epilepsy and insurance in the UK: an exploratory survey of the experiences of people with epilepsy , 2004, Epilepsy & Behavior.

[97]  Ron D. Hays,et al.  Quality of life measures in epilepsy , 2000, Neurology.

[98]  E. Rodin Psychomotor epilepsy and aggressive behavior. , 1973, Archives of general psychiatry.

[99]  Linda Moretti Ojeman Brainstorms: epilepsy in our words , 1994 .

[100]  P. West An Investigation into the Social Construction and Consequences of the Label Epilepsy , 1979, The Sociological review.