- Email: [email protected]
Epilepsy and secondary perceived stigma in a social setting: A night at the theater
Epilepsy & Behavior 61 (2016) 138–140
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Special Communication
Epilepsy and secondary perceived stigma in a social setting: A night at the theater Kenneth R. Kaufman ⁎ Department of Psychiatry, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, United States Department of Neurology, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, United States Department of Anesthesiology, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, United States
a r t i c l e
i n f o
Article history: Received 3 May 2016 Accepted 4 May 2016 Available online 23 June 2016 Keywords: Epilepsy Enacted and felt stigma Quality of life Psychosocial comorbidities Social identity Prevention Education Research
a b s t r a c t Stigma impacts N 50% of persons with epilepsy (PWE) and is a key factory in quality of life. Stigma can be both enacted (external factors) and felt (internal factors). In this article, felt/perceived stigma is more broadly defined as a combination of internal factors and perceptions of external factors. Secondary perceived stigma is felt/perceived stigma by a third party. A key, but often underappreciated, consideration in felt/perceived stigma may occur when a seemingly innocuous statement by a speaker is perceived as stigmatizing by the PWE and/or even by an unintended third party. This autobiographic short report addresses secondary perceived stigma in a social setting, the theater. © 2016 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is the fourth leading neurologic disorder with a lifetime prevalence of 3.8% in the United States [1]. Quality of life (QOL) for persons with epilepsy (PWE) is associated with seizure frequency, seizure severity, adverse effects from antiepileptic drugs (AEDs), and, perhaps most importantly, the severity of associated psychosocial comorbidities [2,3]. Research suggests that the inverse relationship between depression and QOL may be more influential than seizure frequency [4,5]. Anxiety disorders, which often are comorbid with major depression [6], negatively impact QOL in PWE [5]. Both depression and anxiety have been associated with the level of stigma in PWE [7,8]. Stigma is a key psychosocial comorbidity noted to impact 51% in a large-scale study of N5000 PWE [9] and 53.4% in a more recent incident study of N1500 PWE [8]. Further, the degree of stigma is significantly related to poorer QOL in epilepsy and other chronic medical illnesses [8,10–13]. Thus, to maximize QOL in PWE, it is incumbent to minimize psychosocial comorbidities with emphasis on depression, anxiety, and stigma [2–5,7,8,10–13]. Stigma can be both enacted and felt/perceived [14,15]. Enacted stigma in PWE is related to external factors which discriminate and ⁎ Departments of Psychiatry, Neurology, and Anesthesiology, Rutgers Robert Wood Johnson Medical School, 125 Paterson Street, Suite #2200, New Brunswick, New Jersey 08901, United States. Tel.: +1 732 235 7650; fax: +1 732 235 7677. E-mail addresses: [email protected], [email protected].
http://dx.doi.org/10.1016/j.yebeh.2016.05.003 1525-5050/© 2016 Elsevier Inc. All rights reserved.
negatively impact levels of education, marriage, parenting, employment, economics, health-care access, socialization, recreation, and even participation in sports [15–22]. Whereas felt stigma in PWE has been defined as related to internal factors (one's self-concept based on illness status as well as one's fear of enacted stigma) only, felt/perceived stigma in this article is more broadly defined as a combination of internal factors and perceptions of external factors (the enacted or presumptive enacted stigma by others toward the PWE combined with the PWE perceptions of such actions). Secondary perceived stigma is felt/ perceived stigma by a third party. A key, but often underappreciated, consideration in felt/perceived stigma may occur when a seemingly innocuous statement by a speaker is perceived as stigmatizing by the PWE and/or even by an unintended third party. This autobiographic short report addresses secondary perceived stigma in a social setting, the theater. 2. Case The curtains were up in a darkened theater and the imaginative play kept the author fascinated with the medically based plot development of love in the midst of an antidepressant pharmaceutical trial. Suddenly, his attention went from the stage to the real-life play being enacted in the orchestra seat directly in front of him. A young man was noted to have tonic–clonic movements while sitting upright in his orchestra seat which lasted approximately 90 s and ended with this young man leaning on a mature woman seated directly to his left. This ictal event,
K.R. Kaufman / Epilepsy & Behavior 61 (2016) 138–140
witnessed by two physicians (the author and another physician in the orchestra), included lip-smacking movements consistent with an apparent complex partial seizure. Both physicians commented to those asking for assistance that the young man was having a seizure. Following the ictal event, the young man was responsive, stating simply that he had fainted, and was escorted to the lobby by theater personnel with the recommendation from physicians that he be sent onward to an emergency room for further assessment. After the young man had departed, the same mature woman turned and spoke to the woman seated next to the author stating, “I feel sorry for him.” The author, a 68-year-old academic neuropsychiatrist with a 56-year history of epilepsy, was concerned with that phrase, and a dialogue then ensued between the author and this mature woman. Author — “Forgive me for interrupting but could you explain what you meant when you said ‘I feel sorry for him.’” Mature woman — “I feel sorry for him…he is ill, he is alone, and he missed the play he wanted to see.” Author — “I appreciate what you said, but did you consider that a PWE perhaps does not want to be pitied?” Mature woman — “I know what to say, I have members of my family with epilepsy.” Author — “You may have members of your family with epilepsy, but I have epilepsy.” Following this last statement by the author, there was no further response. After the play resumed, the author remained focused on the interchange and the mature woman's apparent unawareness of what her statements could mean to a PWE. The author was both anxious and frustrated at what he perceived to be a stigmatizing statement. Though considered appropriate by the mature woman, her statements resulted in secondary perceived stigma for the author. 3. Discussion When the author initiated this report, it was with the intent to address how the seemingly innocuous statements made by the mature woman could be negatively interpreted by the young man who had the seizure during the play and how, based on her further explanatory comment, “I know what to say, I have members of my family with epilepsy,” she may have been stigmatizing and invaliding these family relatives without her apparent knowledge. The author realized during preparation of this report how he had personally perceived these statements first from an academic perspective but, thereafter, as secondary perceived stigma with anxiety and sadness. The young man was no longer in the theater when the mature woman spoke; thus, though her words were about the young man, they were not spoken at a time when they could hurt him. Yet, these words represented how she viewed epilepsy, and when she spoke in the intimacy of the theater, the one who ultimately was affected by her statements was an unintended third party — the author. Had there been sufficient time for a more meaningful dialogue in which the author could have better expressed the feelings of PWE, their desires to be independent in actions and of the negative words from others, he would not have felt such anxiety after the interchange as he has held many such educational discussions previously with positive outcomes. But not that night, for the continuance of the play did not permit further discussion, and as a result, the author was left frustrated and saddened at the persistence of even subtle stigma. Consider the ongoing debate as to whether those persons who have epilepsy should be called “epileptics” or PWE. One Brazilian study reported statistically significant increased social stigma when the term
139
“epileptics” was compared with the term “PWE” with in high school students who did not have epilepsy [23]. A recent replication study that utilized English university students studying psychology or medicine did not find any statistical differences suggesting that the original findings might be culturally based while acknowledging several limitations: a) these findings might be different within different populations; b) they might be different between age-groups; c) this study did not address “the preferences of those actually living with epilepsy and their reasons” [24]. This author, as an N = 1, can easily respond to the last point: he desires to be called a PWE, for he is a person first who secondarily has a disease, and as such, he does not desire to be defined by or labeled with any disease. Some would argue that “I feel sorry for him” was a statement of sympathy. The author considered this seemingly innocuous sentence and the explanatory “I feel sorry for him…he has an illness” as defining the young man by his illness. There is a subtle difference between “I feel sorry for him…he is ill” and “I feel sorry that he has an illness.” This nuance is important, for to the author, the former suggested pity whereas the latter suggested how the illness was simply unfortunate. Stigma must be considered in context — culture, age, education, characteristics of epilepsy (chronicity, control, AED adverse effects, psychosocial comorbidities), and prior enacted and felt/perceived stigma are only some factors. As such, felt/perceived stigma will differ among individuals. Why, then, were the statements by the mature woman so important to the author? Why could these few words have such an emotional impact on the author? During a lifetime with epilepsy, he has coped with multiple forms of enacted stigma which negatively impacted education, socialization, marriage, parenting, and even employment [16,19]. Further, he has coped with felt stigma and invalidism when he was younger as his parents sought to protect him from classmates and educators knowing of his epilepsy. Even as an active psychiatrist specializing in psychiatric aspects of epilepsy, he had been fearful of sharing his condition with his colleagues [25]. Perhaps it is because as a chemistry graduate student taking a sociology of medicine course he heard, and will never forget, a Harvard professor telling a resident how the next clinic patient was “just another Epi…throw him some pills…he's not interesting.” For this author, defining a person by his illness, as “another Epi” or “an epileptic,” will always be pejorative. How, then, does one live a positive life with epilepsy with avoidance of stigma? During three decades researching stigma in epilepsy, Scambler et al. described the “hidden distress model of epilepsy” with enacted and felt stigma, wherein felt stigma is often “a legacy” of parental overprotection (invalidism) and more disruptive of a normal life while also acknowledging that persons with chronic medical conditions can devise strategies and tactics “to avoid or combat enacted stigma without falling prey to felt stigma” [14,26,27]. Thus, there is a need to undo learnt behaviors with misconceptions of self. Since keeping one's illness secret and being invalided can lead to increased felt stigma, to prevent or minimize such felt stigma requires the PWE to have a better concept of self in which epilepsy is viewed simply as “an ordinary illness” which is no longer hidden from others but openly discussed as appropriate in family, social, educational, and professional settings. For PWE or other chronic medical illnesses, coping with illness with associated ramifications while moving beyond stigma has developmental stages that are normative and address “centrality of the disease, others' perceptions of people with epilepsy, managing information about the disease, and managing medical regimens” [28]. In a recent phenomenographic study, positive and negative attitudes toward epilepsy were summarized as “Living with epilepsy means living a normal life — gaining and maintaining control” versus “Living with epilepsy means living with focus on the condition — conflict and avoidance or resigning to fate” [29]. Descriptive attributes associated with this positive attitude toward epilepsy were divided into three categories: a) accepting the PWE (taking on the challenge — venture; being open about one's epilepsy — make others understand); b) taking
140
K.R. Kaufman / Epilepsy & Behavior 61 (2016) 138–140
responsibility (protecting oneself and others from being injured; helping one's family feel safe); and c) appreciating the good things (changing values, including the values of others) [29]. The themes described in the studies addressed above are consistent with the author's life with epilepsy and his focus on destigmatizing epilepsy for PWE and for society [14,16,19,25–30]. He realizes that the pivotal moment in his personal and professional life occurred in conquering felt stigma when he openly presented about his “Life with Epilepsy”; for once, the silence was broken, his “secret” no longer internally influenced him [16,25]. Fighting stigma is a life-long process which requires openness and advocacy, including addressing seemingly innocuous statements resulting in secondary perceived stigma as occurred in the theater that night; for stigma, considered “a social determinant of population health” [31], flourishes in the absence of awareness, education, discussion, and preventive actions [1]. Acknowledgments This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Conflict of interest statement There are no conflicts of interest to declare. References [1] England MJ, Liverman CT, Schultz AM, Strawbridge LM. Epilepsy across the spectrum: promoting health and understanding. A summary of the Institute of Medicine report. Epilepsy Behav 2012;25:266–76. [2] Taylor RS, Sander JW, Taylor RJ, Baker GA. Predictors of health-related quality of life and costs in adults with epilepsy: a systematic review. Epilepsia 2011;52(12): 2168–80. [3] Lee SJ, Kim JE, Seo JG, Cho YW, Lee JJ, Moon HJ, et al. Predictors of quality of life and their interrelations in Korean people with epilepsy: a MEPSY study. Seizure 2014; 23(9):762–8. [4] Boylan LS, Flint LA, Labovitz DL, Jackson SC, Starner K, Devinsky O. Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy. Neurology 2004;62(2):258–61. [5] Johnson EK, Jones JE, Seidenberg M, Hermann BP. The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia 2004;45(5):544–50. [6] Moscati A, Flint J, Kendler KS. Classification of anxiety disorders comorbid with major depression: common or distinct influences on risk? Depress Anxiety 2016; 33(2):120–7.
[7] Peterson CL, Walker C, Shears G. The social context of anxiety and depression: exploring the role of anxiety and depression in the lives of Australian adults with epilepsy. Epilepsy Behav 2014;34:29–33. [8] Taylor J, Baker GA, Jacoby A. Levels of epilepsy stigma in an incident population and associated factors. Epilepsy Behav 2011;21(3):255–60. [9] Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: a European perspective. Epilepsia 2000;41(1):98–104. [10] Grant AC, Prus N, Nakhutina L. Factors affecting quality of life in epilepsy in a multiethnic urban population. Epilepsy Behav 2013;27(2):283–5. [11] Nehra A, Singla S, Bajpai S, Malviya S, Padma V, Tripathi M. Inverse relationship between stigma and quality of life in India: is epilepsy a disabling neurological condition? Epilepsy Behav 2014;39:116–25. [12] Bautista RE, Shapovalov D, Shoraka AR. Factors associated with increased felt stigma among individuals with epilepsy. Seizure 2015;30:106–12. [13] Earnshaw VA, Quinn DM, Park CL. Anticipated stigma and quality of life among people living with chronic illnesses. Chronic Illn 2012;8(2):79–88. [14] Scambler G. Health-related stigma. Sociol Health Illn 2009;31(3):441–55. [15] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4(3):171–8. [16] Kaufman KR. Life with epilepsy: 1960–1992. Seizure 1994;3(1):77–8. [17] Jacoby A, Gorry J, Baker GA. Employers' attitudes to employment of people with epilepsy: still the same old story? Epilepsia 2005;46(12):1978–87. [18] de Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav 2008;12(4):540–6. [19] Kaufman KR, Kaufman ND. Stand up for epilepsy San Diego photo-shoot: a personal odyssey. Epileptic Disord 2013;15(2):211–5. [20] Amudhan S, Gururaj G, Satishchandra P. Epilepsy in India II: impact, burden, and need for a multisectoral public health response. Ann Indian Acad Neurol 2015; 18(4):369–81. [21] Thurman DJ, Kobau R, Luo YH, Helmers SL, Zack MM. Health-care access among adults with epilepsy: the U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav 2016;55:184–8. [22] Capovilla G, Kaufman KR, Perucca E, Moshé SL, Arida RM. Epilepsy, seizures, physical exercise, and sports: a report from the ILAE task force on sports and epilepsy. Epilepsia 2016;57(1):6–12. [23] Fernandes PT, de Barros NF, Li LM. Stop saying epileptic. Epilepsia 2009;50(5): 1280–3. [24] Noble AJ, Marson AG. Should we stop saying “epileptic”? A comparison of the effect of the terms “epileptic” and “person with epilepsy”. Epilepsy Behav 2016;59:21–7. [25] Kaufman KR. To not be afraid. Seizure 1995;4:145. [26] Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illn 1986;8(1):26–43. [27] Scambler G, Paoli F. Health work, female sex workers and HIV/AIDS: global and local dimensions of stigma and deviance as barriers to effective interventions. Soc Sci Med 2008;66(8):1848–62. [28] Admi H, Shaham B. Living with epilepsy: ordinary people coping with extraordinary situations. Qual Health Res 2007;17(9):1178–87. [29] Räty LK, Wilde-Larsson BM. Patients' perceptions of living with epilepsy: a phenomenographic study. J Clin Nurs 2011;20(13–14):1993–2002. [30] Kaufman KR. Epilepsy & behavior: a professional and a personal home. Epilepsy Behav 2014;40:2–3. [31] Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. Am J Public Health 2013;103(5):813–21.
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Special Communication
Epilepsy and secondary perceived stigma in a social setting: A night at the theater Kenneth R. Kaufman ⁎ Department of Psychiatry, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, United States Department of Neurology, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, United States Department of Anesthesiology, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, United States
a r t i c l e
i n f o
Article history: Received 3 May 2016 Accepted 4 May 2016 Available online 23 June 2016 Keywords: Epilepsy Enacted and felt stigma Quality of life Psychosocial comorbidities Social identity Prevention Education Research
a b s t r a c t Stigma impacts N 50% of persons with epilepsy (PWE) and is a key factory in quality of life. Stigma can be both enacted (external factors) and felt (internal factors). In this article, felt/perceived stigma is more broadly defined as a combination of internal factors and perceptions of external factors. Secondary perceived stigma is felt/perceived stigma by a third party. A key, but often underappreciated, consideration in felt/perceived stigma may occur when a seemingly innocuous statement by a speaker is perceived as stigmatizing by the PWE and/or even by an unintended third party. This autobiographic short report addresses secondary perceived stigma in a social setting, the theater. © 2016 Elsevier Inc. All rights reserved.
1. Introduction Epilepsy is the fourth leading neurologic disorder with a lifetime prevalence of 3.8% in the United States [1]. Quality of life (QOL) for persons with epilepsy (PWE) is associated with seizure frequency, seizure severity, adverse effects from antiepileptic drugs (AEDs), and, perhaps most importantly, the severity of associated psychosocial comorbidities [2,3]. Research suggests that the inverse relationship between depression and QOL may be more influential than seizure frequency [4,5]. Anxiety disorders, which often are comorbid with major depression [6], negatively impact QOL in PWE [5]. Both depression and anxiety have been associated with the level of stigma in PWE [7,8]. Stigma is a key psychosocial comorbidity noted to impact 51% in a large-scale study of N5000 PWE [9] and 53.4% in a more recent incident study of N1500 PWE [8]. Further, the degree of stigma is significantly related to poorer QOL in epilepsy and other chronic medical illnesses [8,10–13]. Thus, to maximize QOL in PWE, it is incumbent to minimize psychosocial comorbidities with emphasis on depression, anxiety, and stigma [2–5,7,8,10–13]. Stigma can be both enacted and felt/perceived [14,15]. Enacted stigma in PWE is related to external factors which discriminate and ⁎ Departments of Psychiatry, Neurology, and Anesthesiology, Rutgers Robert Wood Johnson Medical School, 125 Paterson Street, Suite #2200, New Brunswick, New Jersey 08901, United States. Tel.: +1 732 235 7650; fax: +1 732 235 7677. E-mail addresses: [email protected], [email protected].
http://dx.doi.org/10.1016/j.yebeh.2016.05.003 1525-5050/© 2016 Elsevier Inc. All rights reserved.
negatively impact levels of education, marriage, parenting, employment, economics, health-care access, socialization, recreation, and even participation in sports [15–22]. Whereas felt stigma in PWE has been defined as related to internal factors (one's self-concept based on illness status as well as one's fear of enacted stigma) only, felt/perceived stigma in this article is more broadly defined as a combination of internal factors and perceptions of external factors (the enacted or presumptive enacted stigma by others toward the PWE combined with the PWE perceptions of such actions). Secondary perceived stigma is felt/ perceived stigma by a third party. A key, but often underappreciated, consideration in felt/perceived stigma may occur when a seemingly innocuous statement by a speaker is perceived as stigmatizing by the PWE and/or even by an unintended third party. This autobiographic short report addresses secondary perceived stigma in a social setting, the theater. 2. Case The curtains were up in a darkened theater and the imaginative play kept the author fascinated with the medically based plot development of love in the midst of an antidepressant pharmaceutical trial. Suddenly, his attention went from the stage to the real-life play being enacted in the orchestra seat directly in front of him. A young man was noted to have tonic–clonic movements while sitting upright in his orchestra seat which lasted approximately 90 s and ended with this young man leaning on a mature woman seated directly to his left. This ictal event,
K.R. Kaufman / Epilepsy & Behavior 61 (2016) 138–140
witnessed by two physicians (the author and another physician in the orchestra), included lip-smacking movements consistent with an apparent complex partial seizure. Both physicians commented to those asking for assistance that the young man was having a seizure. Following the ictal event, the young man was responsive, stating simply that he had fainted, and was escorted to the lobby by theater personnel with the recommendation from physicians that he be sent onward to an emergency room for further assessment. After the young man had departed, the same mature woman turned and spoke to the woman seated next to the author stating, “I feel sorry for him.” The author, a 68-year-old academic neuropsychiatrist with a 56-year history of epilepsy, was concerned with that phrase, and a dialogue then ensued between the author and this mature woman. Author — “Forgive me for interrupting but could you explain what you meant when you said ‘I feel sorry for him.’” Mature woman — “I feel sorry for him…he is ill, he is alone, and he missed the play he wanted to see.” Author — “I appreciate what you said, but did you consider that a PWE perhaps does not want to be pitied?” Mature woman — “I know what to say, I have members of my family with epilepsy.” Author — “You may have members of your family with epilepsy, but I have epilepsy.” Following this last statement by the author, there was no further response. After the play resumed, the author remained focused on the interchange and the mature woman's apparent unawareness of what her statements could mean to a PWE. The author was both anxious and frustrated at what he perceived to be a stigmatizing statement. Though considered appropriate by the mature woman, her statements resulted in secondary perceived stigma for the author. 3. Discussion When the author initiated this report, it was with the intent to address how the seemingly innocuous statements made by the mature woman could be negatively interpreted by the young man who had the seizure during the play and how, based on her further explanatory comment, “I know what to say, I have members of my family with epilepsy,” she may have been stigmatizing and invaliding these family relatives without her apparent knowledge. The author realized during preparation of this report how he had personally perceived these statements first from an academic perspective but, thereafter, as secondary perceived stigma with anxiety and sadness. The young man was no longer in the theater when the mature woman spoke; thus, though her words were about the young man, they were not spoken at a time when they could hurt him. Yet, these words represented how she viewed epilepsy, and when she spoke in the intimacy of the theater, the one who ultimately was affected by her statements was an unintended third party — the author. Had there been sufficient time for a more meaningful dialogue in which the author could have better expressed the feelings of PWE, their desires to be independent in actions and of the negative words from others, he would not have felt such anxiety after the interchange as he has held many such educational discussions previously with positive outcomes. But not that night, for the continuance of the play did not permit further discussion, and as a result, the author was left frustrated and saddened at the persistence of even subtle stigma. Consider the ongoing debate as to whether those persons who have epilepsy should be called “epileptics” or PWE. One Brazilian study reported statistically significant increased social stigma when the term
139
“epileptics” was compared with the term “PWE” with in high school students who did not have epilepsy [23]. A recent replication study that utilized English university students studying psychology or medicine did not find any statistical differences suggesting that the original findings might be culturally based while acknowledging several limitations: a) these findings might be different within different populations; b) they might be different between age-groups; c) this study did not address “the preferences of those actually living with epilepsy and their reasons” [24]. This author, as an N = 1, can easily respond to the last point: he desires to be called a PWE, for he is a person first who secondarily has a disease, and as such, he does not desire to be defined by or labeled with any disease. Some would argue that “I feel sorry for him” was a statement of sympathy. The author considered this seemingly innocuous sentence and the explanatory “I feel sorry for him…he has an illness” as defining the young man by his illness. There is a subtle difference between “I feel sorry for him…he is ill” and “I feel sorry that he has an illness.” This nuance is important, for to the author, the former suggested pity whereas the latter suggested how the illness was simply unfortunate. Stigma must be considered in context — culture, age, education, characteristics of epilepsy (chronicity, control, AED adverse effects, psychosocial comorbidities), and prior enacted and felt/perceived stigma are only some factors. As such, felt/perceived stigma will differ among individuals. Why, then, were the statements by the mature woman so important to the author? Why could these few words have such an emotional impact on the author? During a lifetime with epilepsy, he has coped with multiple forms of enacted stigma which negatively impacted education, socialization, marriage, parenting, and even employment [16,19]. Further, he has coped with felt stigma and invalidism when he was younger as his parents sought to protect him from classmates and educators knowing of his epilepsy. Even as an active psychiatrist specializing in psychiatric aspects of epilepsy, he had been fearful of sharing his condition with his colleagues [25]. Perhaps it is because as a chemistry graduate student taking a sociology of medicine course he heard, and will never forget, a Harvard professor telling a resident how the next clinic patient was “just another Epi…throw him some pills…he's not interesting.” For this author, defining a person by his illness, as “another Epi” or “an epileptic,” will always be pejorative. How, then, does one live a positive life with epilepsy with avoidance of stigma? During three decades researching stigma in epilepsy, Scambler et al. described the “hidden distress model of epilepsy” with enacted and felt stigma, wherein felt stigma is often “a legacy” of parental overprotection (invalidism) and more disruptive of a normal life while also acknowledging that persons with chronic medical conditions can devise strategies and tactics “to avoid or combat enacted stigma without falling prey to felt stigma” [14,26,27]. Thus, there is a need to undo learnt behaviors with misconceptions of self. Since keeping one's illness secret and being invalided can lead to increased felt stigma, to prevent or minimize such felt stigma requires the PWE to have a better concept of self in which epilepsy is viewed simply as “an ordinary illness” which is no longer hidden from others but openly discussed as appropriate in family, social, educational, and professional settings. For PWE or other chronic medical illnesses, coping with illness with associated ramifications while moving beyond stigma has developmental stages that are normative and address “centrality of the disease, others' perceptions of people with epilepsy, managing information about the disease, and managing medical regimens” [28]. In a recent phenomenographic study, positive and negative attitudes toward epilepsy were summarized as “Living with epilepsy means living a normal life — gaining and maintaining control” versus “Living with epilepsy means living with focus on the condition — conflict and avoidance or resigning to fate” [29]. Descriptive attributes associated with this positive attitude toward epilepsy were divided into three categories: a) accepting the PWE (taking on the challenge — venture; being open about one's epilepsy — make others understand); b) taking
140
K.R. Kaufman / Epilepsy & Behavior 61 (2016) 138–140
responsibility (protecting oneself and others from being injured; helping one's family feel safe); and c) appreciating the good things (changing values, including the values of others) [29]. The themes described in the studies addressed above are consistent with the author's life with epilepsy and his focus on destigmatizing epilepsy for PWE and for society [14,16,19,25–30]. He realizes that the pivotal moment in his personal and professional life occurred in conquering felt stigma when he openly presented about his “Life with Epilepsy”; for once, the silence was broken, his “secret” no longer internally influenced him [16,25]. Fighting stigma is a life-long process which requires openness and advocacy, including addressing seemingly innocuous statements resulting in secondary perceived stigma as occurred in the theater that night; for stigma, considered “a social determinant of population health” [31], flourishes in the absence of awareness, education, discussion, and preventive actions [1]. Acknowledgments This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Conflict of interest statement There are no conflicts of interest to declare. References [1] England MJ, Liverman CT, Schultz AM, Strawbridge LM. Epilepsy across the spectrum: promoting health and understanding. A summary of the Institute of Medicine report. Epilepsy Behav 2012;25:266–76. [2] Taylor RS, Sander JW, Taylor RJ, Baker GA. Predictors of health-related quality of life and costs in adults with epilepsy: a systematic review. Epilepsia 2011;52(12): 2168–80. [3] Lee SJ, Kim JE, Seo JG, Cho YW, Lee JJ, Moon HJ, et al. Predictors of quality of life and their interrelations in Korean people with epilepsy: a MEPSY study. Seizure 2014; 23(9):762–8. [4] Boylan LS, Flint LA, Labovitz DL, Jackson SC, Starner K, Devinsky O. Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy. Neurology 2004;62(2):258–61. [5] Johnson EK, Jones JE, Seidenberg M, Hermann BP. The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia 2004;45(5):544–50. [6] Moscati A, Flint J, Kendler KS. Classification of anxiety disorders comorbid with major depression: common or distinct influences on risk? Depress Anxiety 2016; 33(2):120–7.
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