- Email: [email protected]
Stigma and epilepsy
Epilepsy & Behavior Epilepsy & Behavior 3 (2002) S21–S25 www.academicpress.com
Stigma and epilepsy Martha J. Morrell* Department of Neurology, Columbia Comprehensive Epilepsy Center, Columbia University, New York, NY 10032, USA Received 18 September 2002; accepted 19 September 2002
Abstract For individuals with epilepsy in the United States and other countries, stigma can be one of the most distressing consequences of having seizures, along with the unpredictability of future seizures and the inability to drive. The impact of stigma on the lives of epilepsy patients is far reaching, frequently including effects on interpersonal relationships, general health, employment opportunities, and overall quality of life. Education about epilepsy directed at the broader community, as well as at the individual with epilepsy, is the most effective means of addressing misperceptions and fear. Epilepsy advocacy organizations, such as the Epilepsy Foundation, are important allies in this effort. Ó 2002 Elsevier Science (USA). All rights reserved. Keywords: Epilepsy; Stigma; Social discrimination; Quality of life
1. What is stigma? The word stigma is derived from the Latin stigmat, which means ‘‘mark’’ or ‘‘brand,’’ and from the Greek stizein, ‘‘to tattoo.’’ Stigma is defined as a brand, a mark of shame or discredit, a stain, and an identifying mark or characteristic. Stigma is a large part of the burden carried by individuals with epilepsy [1]. For many epilepsy patients, the fear of stigma causes them to keep their disorder a secret. 2. How is stigma felt? The initial diagnosis of epilepsy brings with it concerns about seizures, the requirement to take medication, and the fear of othersÕ reactions. Additionally, individuals with newly diagnosed epilepsy may have their own misperceptions about the condition that contribute to their reactions. A recent survey of people with epilepsy by Fisher et al. [2] indicated that more than half of participants described fear, depression, or anger as their initial reaction to the diagnosis of epilepsy. Twenty-four percent mentioned their concern *
Fax: 1-212-305-1450. E-mail address: [email protected].
about social stigma, the fear of othersÕ reactions, shame, and loneliness. Embarrassment or shame was more common in persons who received the diagnosis as children or adolescents than in patients who were diagnosed later in life. When study participants were asked to identify the worst aspect of having epilepsy, stigma was ranked second (23.8%), just after the unpredictability of the next seizureÕs occurrence (32.3%) and just before the use of medication (18.7%) and the inability to drive (10.9%). Stigma is not just a problem in the United States. Buck et al. [3] assessed epilepsy-associated stigma in Europe. Information about patient-perceived stigma was collected using self-completed questionnaires mailed to more than 5000 members of epilepsy support groups in 15 European countries. Fifty-one percent of participants reported feeling stigmatized; 18% reported feeling highly stigmatized. Perceived stigmatization correlated with worry, negative feelings about life, long-term health problems, injuries, and more reported side effects of antiepilepsy drugs (AEDs). In another study concerning the psychosocial impact of epilepsy, Chaplin et al. [4] mailed questionnaires to adults in England who had received a diagnosis of epilepsy within the preceding 36 months. A specially designed, validated attitude questionnaire examined 14 areas of psychosocial adjustment to epilepsy. Problems
1525-5050/02/$ - see front matter Ó 2002 Elsevier Science (USA). All rights reserved. PII: S 1 5 2 5 - 5 0 5 0 ( 0 2 ) 0 0 5 4 7 - 4
S22
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
in at least one area were experienced by 175 (91%) of the 192 subjects. The areas of greatest concern were fear of seizures (80% of cases, 72% moderate or severe) and fear of stigma in employment (69% of cases, 40% moderate or severe). Persons with more frequent seizures and those who had experienced a seizure recently were more likely to have poor psychosocial adjustment than other participants. Ultimately, stigma causes an individual to feel negatively defined by his or her epilepsy. One patient recently wrote to the author regarding the impact of epilepsyrelated stigma: I am a correctional officer for the State of ———. I was diagnosed with epilepsy 23 years ago after a high school baseball injury. All of my adult life I have been running from this disorder called ‘‘epilepsy.’’ Never admitting to anyone that I had this ‘‘dreaded’’ disease. I have kept it locked inside me until just recently. Working in a jail 14 years I can honestly say I have pretty much seen everything. Oddly enough the one thing that gnaws at me to this day is all the times I would sit by and listen to my fellow officers making fun of epileptic inmates with comments such as ‘‘heÕs flopping around the floor like a fish’’ or ‘‘heÕs wearing a crash helmet now because he falls down so much,’’ etc. Fortunately, my seizures are mild. I learned early and quickly how to hide my seizures or explain them away. The sad part of it all is that it was easy, not due to being a talented storyteller but because the general public is still very ignorant about epilepsy. Recently, my whole life changed. I had a seizure at work brought on by lack of sleep. I am presently out of work. My department wants to ‘‘pension me out’’ on 40% disability pay. I am in trouble and I need help.
3. How does stigma affect persons with epilepsy? Stigma affects epilepsy patients in a variety of ways. Lower marriage rates for men and women with epilepsy are partially attributable to stigma. Fisher et al. [2] recently reported that 51% of men with epilepsy were married, in contrast to 63% of men without epilepsy. Likewise, only 48% of women with epilepsy were married, compared with 59% of women without epilepsy. Limited social opportunities contribute to lower birth rates among men and women with epilepsy [5]. Stigma may also affect patientsÕ health by impacting access to care and by contributing psychosocial stress to the physiological burden of disease. The Centers for Disease Control and Prevention (CDC) recently assessed data on health-related quality of life (HRQOL) as determined from the 1998 Texas Behavioral Risk Factor Surveillance System [6]. Individuals with epilepsy reported substantially worse HRQOL than those without epilepsy; 45.9% of persons with epilepsy reported fair or poor health, compared with 18.5% of those without epilepsy. Additionally, individuals with epilepsy reported 4.4 more physically unhealthy days, 5.2 more mentally unhealthy days, 6.4 more overall unhealthy
days, 4.0 more recent activity limitation days, 6.8 more days of pain, 5.6 more days of depression, 5.2 more days of anxiety, 3.5 more days of insufficient sleep or rest, and 3.3 fewer days of vitality in the 30 days preceding the survey than study participants without epilepsy. These findings are comparable to the number of unhealthy days experienced by persons with arthritis, heart problems, diabetes, and cancer [6]. Stigma and poor HRQOL associated with epilepsy contribute to the disorderÕs economic impact. Epilepsy costs the United States more than $12.5 billion each year, with the indirect, employment-related costs accounting for more than 85% ($10.8 billion per year) of the total cost [7]. Moreover, the household income of persons with epilepsy is 93% of the median family income in the United States [2]. Stigma may also manifest itself as missed educational and employment opportunities. Persons with epilepsy are less likely to graduate from high school than those without the disorder. In the United States, 64% of persons with epilepsy are high school graduates, compared with the overall high school graduation rate of 81.7% [2]. A statistically significantly smaller proportion (20%) of persons with epilepsy graduate from college compared with the general population (23%) [2]. Persons with epilepsy have a 25% rate of unemployment, and 64% of these attribute their unemployment to epilepsy; among people whose seizures are poorly controlled, the unemployment rate approaches 50% [2]. Employment discrimination is a reality for many individuals with epilepsy. Although the Americans with Disabilities Act (ADA) was initially thought to address many of the discriminatory employment practices adversely impacting persons with epilepsy, recent judicial rulings suggest that persons with epilepsy have little protection against unreasonable employment practices [8]. Employment discrimination is an issue in other developed nations as well. In Sweden, the employment experiences of 245 persons with epilepsy (and no other neurological problem) were examined as part of a study to identify the rehabilitation needs of an epilepsy outpatient clinic [9]. ‘‘Job problems’’ were experienced by 35% of study participants. Nine percent of participants were unemployed, and a further 16% were receiving disability compensation. Patients with controlled seizures were more likely to be employed and less likely to have experienced job problems, to feel limited by their epilepsy, or to experience stigma. Among patients with uncontrolled seizures, 50% had experienced job problems, and 22% did not feel that their epilepsy had affected their current employment situation. However, the younger the patients were at the time of diagnosis, the more likely they were to feel that epilepsy had negatively affected their current employment situation. This survey suggests that employment discrimination is a serious
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
problem that can lead to underemployment and restricted career development and that such issues are most likely to affect those who have dealt with epilepsy early in life.
4. How does stigma impact quality of life? Quality of life in individuals with epilepsy is negatively impacted by the stigma surrounding the condition. A recent study by Suurmeijer et al. [10] used questionnaires to assess health perceptions and social/psychological functioning of 210 epilepsy patients from four outpatient clinics in The Netherlands. These patients identified psychological distress, loneliness, adjustment and coping, and stigma perception as the most important influences on their quality of life. These perceptions did not vary between patients with mild epilepsy and those with more severe epilepsy. Another quality-of-life study compared responses of persons with epilepsy across several European countries [11]. Questionnaires were sent to adults with epilepsy recruited from epilepsy support groups or outpatient clinics. When patientsÕ sociodemographic and clinical characteristics were controlled, significant betweencountry differences were noted in the perceived impact of epilepsy and feelings of stigma. Respondents in Spain and The Netherlands felt the least impact and stigma; respondents in France, the most. The authors noted that their results highlighted the varying experiences of people with epilepsy from different countries and cultures.
5. Is stigma universal and inevitable? Not all people feel stigmatized by their epilepsy. The degree to which a person feels stigmatized by epilepsy may be related less to seizure severity than to what is learned and experienced in the social and work environments. In one study of 445 epilepsy patients, the perception of stigma was found to be highly dependent on whether the individual had experienced employment discrimination and life limitations because of epilepsy [12]. Education seemed to protect against feeling stigmatized, as years of schooling were negatively correlated with the perception of stigma. ParentsÕ beliefs and behaviors regarding epilepsy are critical contributors to their childrenÕs concepts of what it means to have epilepsy and to their childrenÕs perceptions of stigma. One report indicated that parents who believe that their child will be stigmatized and who perceive that epilepsy limits their child report more behavioral problems in their children than parents who do not share these beliefs [13]. Additionally, children with epilepsy who report that their parents are overcontrol-
S23
ling also have more behavioral problems than children with epilepsy who do not report overcontrolling behavior from their parents. ChildrenÕs behavioral problems are not predicted by seizure type or frequency but are predicted by their parentsÕ perceived stigma, perceived limitations, and extent of control. Another problematic issue is that some parents of children with epilepsy may perceive that the childÕs epilepsy is happening to them. Thirty-three percent of parents in one study perceived themselves, rather than their child, as having been ‘‘thrown off balance’’ by their childÕs recent diagnosis of epilepsy [14]. This overidentification with the childÕs neurological condition impedes the normal differentiation process that must take place between parents and adolescents for children to grow into healthy adults. Adolescents may require special attention to ensure that they view epilepsy in an appropriate perspective [15,16]. Research suggests that adaptation to a diagnosis of epilepsy is more difficult for adolescents than for young children [14]. One study examined the association of stigma and self-esteem among 64 adolescents with epilepsy [17]. The belief that epilepsy is stigmatizing predicted low self-esteem. Seizure type and seizure frequency also predicted low self-esteem in these adolescents.
6. How is stigma created and propagated? Public misperceptions about epilepsy contribute to stigma and social disability. Misrepresentation of epilepsy in the media is part of the problem. Krauss et al. [18] surveyed the English language print media between 1991 and 1996 to identify general interest stories about epilepsy; 210 stories were identified. Sources for the stories included physicians and researchers (43%), public sources (22%), patients and families (18%), epilepsy associations (11%), and corporate sources (5%). Major themes in the stories included personal vignettes about overcoming epilepsy, new drug therapies, nondrug treatments, and scientific advances. Thirty-one percent of the stories contained inaccuracies, including scientific inaccuracy (14%), severe exaggeration of treatment benefits (9%), and exaggerated risks of seizures (5%). Some of the stories also provided incorrect information regarding seizure first aid. Additionally, many of the stories employed demonic imagery and referred to treatment as divine intervention. Frequently, people with epilepsy themselves are sources of inaccurate information regarding the condition. In a study by Long et al. [19], 175 patients from a tertiary epilepsy center completed a knowledge questionnaire pertaining to epilepsy. Thirty percent of patients believed that epilepsy is a mental disorder or is contagious; 41% believed that it is appropriate to place
S24
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
an object in the mouth of a person having a seizure; and 25% believed that women should stop taking AEDs when pregnant. PatientsÕ age, duration of epilepsy, and years of education did not correlate with their knowledge about epilepsy.
7. How can stigma be addressed? 7.1. Good medical care and good information Access to the best medical care and the most accurate information is the antidote for stigma. Education must involve not only the affected individual, but also the whole community, including family, friends, educators, potential employers, health insurers, the media, and policy makers. Research suggests that, in the early stages of epilepsy, psychosocial effects are closely related to the severity of the medical condition [4], indicating that prompt improvements in seizure control lead to less perceived stigma. Stigma must be addressed early in life. Reversing the negative impact of low self-esteem and misperceptions regarding epilepsy may become more difficult if such beliefs are not addressed during earlier childhood and persist into adolescence. For adolescents with epilepsy, the disorder may elicit problems and stresses in addition to those that normally accompany the teen years of life. In fact, 23% of adolescents with epilepsy may have symptoms of depression [20]. Predictors of depression include the adolescentÕs attitude toward epilepsy, quality of family relationships, and unknown locus of control or feeling that the locus of control resides with socially powerful others (e.g., parents) [20], Therefore, the Epilepsy Foundation and the CDC are developing a program to improve the lives of adolescents who have seizure disorders [21]. The goal of this program is to intervene with adolescents both with and without epilepsy to prevent the social and psychological fallout from seizures, working from the premise that attitudes are easiest to change when they are changed early in life. 7.2. Legal and regulatory action Legislation of perceptions and misbeliefs is difficult; however, regulations and laws can shape behavior that may ultimately change attitudes. Information regarding the ADA and legal requirements to establish disability is available from the Epilepsy FoundationÕs website [8] and is summarized herein. Courts have recognized epilepsy as a disability under state and federal antidiscrimination laws. Successful cases brought under the federal Rehabilitation Act of 1973 recognized people with seizure disorders as disabled under the law on the basis of the stigma associated with seizure disorders and the varied nature of seizures.
Whether epilepsy is considered a disability under the ADA is debatable, however. Congress and the courts, including the Supreme Court, have acknowledged that fear of a personÕs disability can form the basis for discrimination, and epilepsy is an example of one such disability that can lead to discrimination. However, recent Supreme Court rulings suggest that a person with controlled seizures may not be considered disabled, even if epilepsy-associated stigma limits his or her employment opportunities. Nevertheless, people with epilepsy commonly enter and exit the work force because of issues related to their seizure condition, and they are frequently underemployed relative to their education and abilities [2,7,9]. Even for individuals with controlled seizures, employers may discriminate because they mistakenly believe that the person with epilepsy is substantially impaired due to seizures. In its recent decisions, the Supreme Court has required that persons with controlled epilepsy must demonstrate a substantial disability despite treatment, such as substantial impairment in ability to work or perform some other activity of daily living, to be considered disabled. In other words, if seizures persist or if the individual is limited because of other neurological symptoms or medication-related side effects (such as problems with memory or fatigue), that person is considered disabled. Additional employment difficulties may arise for people with epilepsy who do not drive. Finding transportation to the workplace can be a daily challenge for many individuals. Many municipalities provide transportation services for persons with epilepsy, but others fail to recognize epilepsy, unlike physical disabilities, as adequate justification for transportation assistance. 7.3. Self-advocacy Self-advocacy can be taught to epilepsy patients, and organizations such as the Epilepsy Foundation can be enlisted to help. Individual and/or family counseling may help to bolster self-esteem, define realistic expectations, and formulate an appropriate life plan. Once a person with epilepsy has established an appropriate life goal, action must be taken to carry out that goal. PatientsÕ active involvement in effecting desired life changes may make them feel less helpless and less likely to develop depression [20]. If a person with epilepsy is discriminated against because of his or her disorder, complaints alleging violations of the ADA can be filed with the Equal Employment Opportunity Commission. Complaints may also be filed with local or state fair employment practice agencies under the federal Rehabilitation Act of 1973 or under other federal and local laws. Clinicians can help ensure that epilepsy patients are provided with accurate information that neither mini-
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
mizes nor exaggerates the potential impact of the disorder. Warnings can be given regarding possible sources of inaccurate information, such as the Internet, and patients should be made aware of reliable information sources, including the Epilepsy Foundation, the American Epilepsy Society, and the American Academy of Neurology. Education about epilepsy can be provided to patients and family members by such organizations. 8. Conclusions
[6]
[7]
[8]
[9]
New treatments for epilepsy offer improved seizure control and fewer treatment-related adverse effects. However, people with epilepsy frequently will have to cope with stigma and its consequences until society puts epilepsy into its appropriate context. This discussion underscores the necessity for treating the ‘‘whole patient’’ and reinforces the role of the health care provider as an advocate for the patient with epilepsy. Epilepsy, like many chronic diseases, impacts the life of the individual in ways that are sometimes obvious and sometimes relatively subtle. The broad community determines, to a great extent, how disabled an individual will be by his or her seizure disorder. Until the community has a basic understanding of epilepsy and no longer fears this common neurological condition, stigma will likely continue to be as much of a challenge for the person with epilepsy as are the seizures.
[10]
References
[17]
[1] Morrell M, Pedley TA. ‘‘The scarlet E’’: epilepsy is still a burden. Neurology 2000;54:1882–3. [2] Fisher RS, Vickrey BG, Gibson P, et al. The impact of epilepsy from the patientÕs perspective. II. Views about therapy and health care. Epilepsy Res 2000;41:53–61. [3] Buck D, Jacoby A, Baker GA, Lye H, Steen N. Cross-cultural differences in health-related quality of life of people with epilepsy: findings from a European study. Qual Life Res 1999;8:675–85. [4] Chaplin JE, Yepez Lasso R, Shorvon SD, Floyd M. National general practice study of epilepsy: the social and psychological effects of a recent diagnosis of epilepsy. Br Med J 1992;304:1416–8. [5] Zahn CA, Morrell MJ, Collins SD, Labiner DM, Yerby MS. Management issues for women with epilepsy: a review of the
[11] [12] [13]
[14]
[15]
[16]
[18]
[19]
[20]
[21]
S25
literature. American Academy of Neurology Practice Guidelines. Neurology 1998;51:949–56. Centers for Disease Control and Prevention. Health-related quality of life among persons with epilepsy—Texas, 1998. MMWR 2001;19:24–6. Begley C, Famulari M, Annegers JF, et al. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia 2000;41:341–51. Civil rights. Epilepsy Foundation web site. Available from: http://www.epilepsyfoundation.org/Advocacy/rights/rights.html. Accessed August 22, 2002. Chaplin JE, Webster A, Tomson T. Factors associated with the employment problems of people with established epilepsy. Seizure 1998;7:299–303. Suurmeijer TP, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning and quality of life in epilepsy. Epilepsia 2001;42:1160–8. Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: a European perspective. Epilepsia 2000;41:98–104. Ryan R, Kempner K, Emlen AC. The stigma of epilepsy as a selfconcept. Epilepsia 1980;21:433–44. Carlton-Ford S, Miller R, Nealeigh N, Sanchez N. The effects of perceived stigma and psychological over-control on the behavioral problems of children with epilepsy. Seizure 1997;6:383–91. Oostrom KJ, Schouten A, Kruitwagen CL, Perters AC, Jennekens-Schinkel A. The Dutch Study Group of Epilepsy in Childhood. ParentsÕ perceptions of adversity introduced by upheaval and uncertainty at the onset of childhood epilepsy. Epilepsia 2001;42:1452–60. Communication at CDC: teens talk straight about epilepsy. Available from: http://www.cdc.gov/communication/campaigns/ Epilepsy.htm. Accessed September 9, 2002. Epilepsy Foundation eNewsletter: teens surveyed about their attitudes on epilepsy. Available from: http://www.efa.org/epusa/ enewsletter/articles/0801/teensurvey.html. Accessed September 9, 2002. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol 1992;15:633–49. Krauss GL, Gondek S, Krumholz A, Paul S, Shen F. ‘‘The scarlet E’’: the presentation of epilepsy in the English-language print media. Neurology 2000;54:1894–8. Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment of epilepsy patientsÕ knowledge of their disorder. Epilepsia 2000;41:727–31. Dunn DW, Austin JK, Huster GA. Symptoms and depression in adolescents with epilepsy. J Am Acad Child Adolesc Psychiatry 1999;38:1132–8. CDC Epilepsy Program. Epilepsy Foundation website. Available from: http://www.efa/org/advocacy/phealth/cdcrec.html. Accessed September 9, 2002.
Stigma and epilepsy Martha J. Morrell* Department of Neurology, Columbia Comprehensive Epilepsy Center, Columbia University, New York, NY 10032, USA Received 18 September 2002; accepted 19 September 2002
Abstract For individuals with epilepsy in the United States and other countries, stigma can be one of the most distressing consequences of having seizures, along with the unpredictability of future seizures and the inability to drive. The impact of stigma on the lives of epilepsy patients is far reaching, frequently including effects on interpersonal relationships, general health, employment opportunities, and overall quality of life. Education about epilepsy directed at the broader community, as well as at the individual with epilepsy, is the most effective means of addressing misperceptions and fear. Epilepsy advocacy organizations, such as the Epilepsy Foundation, are important allies in this effort. Ó 2002 Elsevier Science (USA). All rights reserved. Keywords: Epilepsy; Stigma; Social discrimination; Quality of life
1. What is stigma? The word stigma is derived from the Latin stigmat, which means ‘‘mark’’ or ‘‘brand,’’ and from the Greek stizein, ‘‘to tattoo.’’ Stigma is defined as a brand, a mark of shame or discredit, a stain, and an identifying mark or characteristic. Stigma is a large part of the burden carried by individuals with epilepsy [1]. For many epilepsy patients, the fear of stigma causes them to keep their disorder a secret. 2. How is stigma felt? The initial diagnosis of epilepsy brings with it concerns about seizures, the requirement to take medication, and the fear of othersÕ reactions. Additionally, individuals with newly diagnosed epilepsy may have their own misperceptions about the condition that contribute to their reactions. A recent survey of people with epilepsy by Fisher et al. [2] indicated that more than half of participants described fear, depression, or anger as their initial reaction to the diagnosis of epilepsy. Twenty-four percent mentioned their concern *
Fax: 1-212-305-1450. E-mail address: [email protected].
about social stigma, the fear of othersÕ reactions, shame, and loneliness. Embarrassment or shame was more common in persons who received the diagnosis as children or adolescents than in patients who were diagnosed later in life. When study participants were asked to identify the worst aspect of having epilepsy, stigma was ranked second (23.8%), just after the unpredictability of the next seizureÕs occurrence (32.3%) and just before the use of medication (18.7%) and the inability to drive (10.9%). Stigma is not just a problem in the United States. Buck et al. [3] assessed epilepsy-associated stigma in Europe. Information about patient-perceived stigma was collected using self-completed questionnaires mailed to more than 5000 members of epilepsy support groups in 15 European countries. Fifty-one percent of participants reported feeling stigmatized; 18% reported feeling highly stigmatized. Perceived stigmatization correlated with worry, negative feelings about life, long-term health problems, injuries, and more reported side effects of antiepilepsy drugs (AEDs). In another study concerning the psychosocial impact of epilepsy, Chaplin et al. [4] mailed questionnaires to adults in England who had received a diagnosis of epilepsy within the preceding 36 months. A specially designed, validated attitude questionnaire examined 14 areas of psychosocial adjustment to epilepsy. Problems
1525-5050/02/$ - see front matter Ó 2002 Elsevier Science (USA). All rights reserved. PII: S 1 5 2 5 - 5 0 5 0 ( 0 2 ) 0 0 5 4 7 - 4
S22
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
in at least one area were experienced by 175 (91%) of the 192 subjects. The areas of greatest concern were fear of seizures (80% of cases, 72% moderate or severe) and fear of stigma in employment (69% of cases, 40% moderate or severe). Persons with more frequent seizures and those who had experienced a seizure recently were more likely to have poor psychosocial adjustment than other participants. Ultimately, stigma causes an individual to feel negatively defined by his or her epilepsy. One patient recently wrote to the author regarding the impact of epilepsyrelated stigma: I am a correctional officer for the State of ———. I was diagnosed with epilepsy 23 years ago after a high school baseball injury. All of my adult life I have been running from this disorder called ‘‘epilepsy.’’ Never admitting to anyone that I had this ‘‘dreaded’’ disease. I have kept it locked inside me until just recently. Working in a jail 14 years I can honestly say I have pretty much seen everything. Oddly enough the one thing that gnaws at me to this day is all the times I would sit by and listen to my fellow officers making fun of epileptic inmates with comments such as ‘‘heÕs flopping around the floor like a fish’’ or ‘‘heÕs wearing a crash helmet now because he falls down so much,’’ etc. Fortunately, my seizures are mild. I learned early and quickly how to hide my seizures or explain them away. The sad part of it all is that it was easy, not due to being a talented storyteller but because the general public is still very ignorant about epilepsy. Recently, my whole life changed. I had a seizure at work brought on by lack of sleep. I am presently out of work. My department wants to ‘‘pension me out’’ on 40% disability pay. I am in trouble and I need help.
3. How does stigma affect persons with epilepsy? Stigma affects epilepsy patients in a variety of ways. Lower marriage rates for men and women with epilepsy are partially attributable to stigma. Fisher et al. [2] recently reported that 51% of men with epilepsy were married, in contrast to 63% of men without epilepsy. Likewise, only 48% of women with epilepsy were married, compared with 59% of women without epilepsy. Limited social opportunities contribute to lower birth rates among men and women with epilepsy [5]. Stigma may also affect patientsÕ health by impacting access to care and by contributing psychosocial stress to the physiological burden of disease. The Centers for Disease Control and Prevention (CDC) recently assessed data on health-related quality of life (HRQOL) as determined from the 1998 Texas Behavioral Risk Factor Surveillance System [6]. Individuals with epilepsy reported substantially worse HRQOL than those without epilepsy; 45.9% of persons with epilepsy reported fair or poor health, compared with 18.5% of those without epilepsy. Additionally, individuals with epilepsy reported 4.4 more physically unhealthy days, 5.2 more mentally unhealthy days, 6.4 more overall unhealthy
days, 4.0 more recent activity limitation days, 6.8 more days of pain, 5.6 more days of depression, 5.2 more days of anxiety, 3.5 more days of insufficient sleep or rest, and 3.3 fewer days of vitality in the 30 days preceding the survey than study participants without epilepsy. These findings are comparable to the number of unhealthy days experienced by persons with arthritis, heart problems, diabetes, and cancer [6]. Stigma and poor HRQOL associated with epilepsy contribute to the disorderÕs economic impact. Epilepsy costs the United States more than $12.5 billion each year, with the indirect, employment-related costs accounting for more than 85% ($10.8 billion per year) of the total cost [7]. Moreover, the household income of persons with epilepsy is 93% of the median family income in the United States [2]. Stigma may also manifest itself as missed educational and employment opportunities. Persons with epilepsy are less likely to graduate from high school than those without the disorder. In the United States, 64% of persons with epilepsy are high school graduates, compared with the overall high school graduation rate of 81.7% [2]. A statistically significantly smaller proportion (20%) of persons with epilepsy graduate from college compared with the general population (23%) [2]. Persons with epilepsy have a 25% rate of unemployment, and 64% of these attribute their unemployment to epilepsy; among people whose seizures are poorly controlled, the unemployment rate approaches 50% [2]. Employment discrimination is a reality for many individuals with epilepsy. Although the Americans with Disabilities Act (ADA) was initially thought to address many of the discriminatory employment practices adversely impacting persons with epilepsy, recent judicial rulings suggest that persons with epilepsy have little protection against unreasonable employment practices [8]. Employment discrimination is an issue in other developed nations as well. In Sweden, the employment experiences of 245 persons with epilepsy (and no other neurological problem) were examined as part of a study to identify the rehabilitation needs of an epilepsy outpatient clinic [9]. ‘‘Job problems’’ were experienced by 35% of study participants. Nine percent of participants were unemployed, and a further 16% were receiving disability compensation. Patients with controlled seizures were more likely to be employed and less likely to have experienced job problems, to feel limited by their epilepsy, or to experience stigma. Among patients with uncontrolled seizures, 50% had experienced job problems, and 22% did not feel that their epilepsy had affected their current employment situation. However, the younger the patients were at the time of diagnosis, the more likely they were to feel that epilepsy had negatively affected their current employment situation. This survey suggests that employment discrimination is a serious
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
problem that can lead to underemployment and restricted career development and that such issues are most likely to affect those who have dealt with epilepsy early in life.
4. How does stigma impact quality of life? Quality of life in individuals with epilepsy is negatively impacted by the stigma surrounding the condition. A recent study by Suurmeijer et al. [10] used questionnaires to assess health perceptions and social/psychological functioning of 210 epilepsy patients from four outpatient clinics in The Netherlands. These patients identified psychological distress, loneliness, adjustment and coping, and stigma perception as the most important influences on their quality of life. These perceptions did not vary between patients with mild epilepsy and those with more severe epilepsy. Another quality-of-life study compared responses of persons with epilepsy across several European countries [11]. Questionnaires were sent to adults with epilepsy recruited from epilepsy support groups or outpatient clinics. When patientsÕ sociodemographic and clinical characteristics were controlled, significant betweencountry differences were noted in the perceived impact of epilepsy and feelings of stigma. Respondents in Spain and The Netherlands felt the least impact and stigma; respondents in France, the most. The authors noted that their results highlighted the varying experiences of people with epilepsy from different countries and cultures.
5. Is stigma universal and inevitable? Not all people feel stigmatized by their epilepsy. The degree to which a person feels stigmatized by epilepsy may be related less to seizure severity than to what is learned and experienced in the social and work environments. In one study of 445 epilepsy patients, the perception of stigma was found to be highly dependent on whether the individual had experienced employment discrimination and life limitations because of epilepsy [12]. Education seemed to protect against feeling stigmatized, as years of schooling were negatively correlated with the perception of stigma. ParentsÕ beliefs and behaviors regarding epilepsy are critical contributors to their childrenÕs concepts of what it means to have epilepsy and to their childrenÕs perceptions of stigma. One report indicated that parents who believe that their child will be stigmatized and who perceive that epilepsy limits their child report more behavioral problems in their children than parents who do not share these beliefs [13]. Additionally, children with epilepsy who report that their parents are overcontrol-
S23
ling also have more behavioral problems than children with epilepsy who do not report overcontrolling behavior from their parents. ChildrenÕs behavioral problems are not predicted by seizure type or frequency but are predicted by their parentsÕ perceived stigma, perceived limitations, and extent of control. Another problematic issue is that some parents of children with epilepsy may perceive that the childÕs epilepsy is happening to them. Thirty-three percent of parents in one study perceived themselves, rather than their child, as having been ‘‘thrown off balance’’ by their childÕs recent diagnosis of epilepsy [14]. This overidentification with the childÕs neurological condition impedes the normal differentiation process that must take place between parents and adolescents for children to grow into healthy adults. Adolescents may require special attention to ensure that they view epilepsy in an appropriate perspective [15,16]. Research suggests that adaptation to a diagnosis of epilepsy is more difficult for adolescents than for young children [14]. One study examined the association of stigma and self-esteem among 64 adolescents with epilepsy [17]. The belief that epilepsy is stigmatizing predicted low self-esteem. Seizure type and seizure frequency also predicted low self-esteem in these adolescents.
6. How is stigma created and propagated? Public misperceptions about epilepsy contribute to stigma and social disability. Misrepresentation of epilepsy in the media is part of the problem. Krauss et al. [18] surveyed the English language print media between 1991 and 1996 to identify general interest stories about epilepsy; 210 stories were identified. Sources for the stories included physicians and researchers (43%), public sources (22%), patients and families (18%), epilepsy associations (11%), and corporate sources (5%). Major themes in the stories included personal vignettes about overcoming epilepsy, new drug therapies, nondrug treatments, and scientific advances. Thirty-one percent of the stories contained inaccuracies, including scientific inaccuracy (14%), severe exaggeration of treatment benefits (9%), and exaggerated risks of seizures (5%). Some of the stories also provided incorrect information regarding seizure first aid. Additionally, many of the stories employed demonic imagery and referred to treatment as divine intervention. Frequently, people with epilepsy themselves are sources of inaccurate information regarding the condition. In a study by Long et al. [19], 175 patients from a tertiary epilepsy center completed a knowledge questionnaire pertaining to epilepsy. Thirty percent of patients believed that epilepsy is a mental disorder or is contagious; 41% believed that it is appropriate to place
S24
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
an object in the mouth of a person having a seizure; and 25% believed that women should stop taking AEDs when pregnant. PatientsÕ age, duration of epilepsy, and years of education did not correlate with their knowledge about epilepsy.
7. How can stigma be addressed? 7.1. Good medical care and good information Access to the best medical care and the most accurate information is the antidote for stigma. Education must involve not only the affected individual, but also the whole community, including family, friends, educators, potential employers, health insurers, the media, and policy makers. Research suggests that, in the early stages of epilepsy, psychosocial effects are closely related to the severity of the medical condition [4], indicating that prompt improvements in seizure control lead to less perceived stigma. Stigma must be addressed early in life. Reversing the negative impact of low self-esteem and misperceptions regarding epilepsy may become more difficult if such beliefs are not addressed during earlier childhood and persist into adolescence. For adolescents with epilepsy, the disorder may elicit problems and stresses in addition to those that normally accompany the teen years of life. In fact, 23% of adolescents with epilepsy may have symptoms of depression [20]. Predictors of depression include the adolescentÕs attitude toward epilepsy, quality of family relationships, and unknown locus of control or feeling that the locus of control resides with socially powerful others (e.g., parents) [20], Therefore, the Epilepsy Foundation and the CDC are developing a program to improve the lives of adolescents who have seizure disorders [21]. The goal of this program is to intervene with adolescents both with and without epilepsy to prevent the social and psychological fallout from seizures, working from the premise that attitudes are easiest to change when they are changed early in life. 7.2. Legal and regulatory action Legislation of perceptions and misbeliefs is difficult; however, regulations and laws can shape behavior that may ultimately change attitudes. Information regarding the ADA and legal requirements to establish disability is available from the Epilepsy FoundationÕs website [8] and is summarized herein. Courts have recognized epilepsy as a disability under state and federal antidiscrimination laws. Successful cases brought under the federal Rehabilitation Act of 1973 recognized people with seizure disorders as disabled under the law on the basis of the stigma associated with seizure disorders and the varied nature of seizures.
Whether epilepsy is considered a disability under the ADA is debatable, however. Congress and the courts, including the Supreme Court, have acknowledged that fear of a personÕs disability can form the basis for discrimination, and epilepsy is an example of one such disability that can lead to discrimination. However, recent Supreme Court rulings suggest that a person with controlled seizures may not be considered disabled, even if epilepsy-associated stigma limits his or her employment opportunities. Nevertheless, people with epilepsy commonly enter and exit the work force because of issues related to their seizure condition, and they are frequently underemployed relative to their education and abilities [2,7,9]. Even for individuals with controlled seizures, employers may discriminate because they mistakenly believe that the person with epilepsy is substantially impaired due to seizures. In its recent decisions, the Supreme Court has required that persons with controlled epilepsy must demonstrate a substantial disability despite treatment, such as substantial impairment in ability to work or perform some other activity of daily living, to be considered disabled. In other words, if seizures persist or if the individual is limited because of other neurological symptoms or medication-related side effects (such as problems with memory or fatigue), that person is considered disabled. Additional employment difficulties may arise for people with epilepsy who do not drive. Finding transportation to the workplace can be a daily challenge for many individuals. Many municipalities provide transportation services for persons with epilepsy, but others fail to recognize epilepsy, unlike physical disabilities, as adequate justification for transportation assistance. 7.3. Self-advocacy Self-advocacy can be taught to epilepsy patients, and organizations such as the Epilepsy Foundation can be enlisted to help. Individual and/or family counseling may help to bolster self-esteem, define realistic expectations, and formulate an appropriate life plan. Once a person with epilepsy has established an appropriate life goal, action must be taken to carry out that goal. PatientsÕ active involvement in effecting desired life changes may make them feel less helpless and less likely to develop depression [20]. If a person with epilepsy is discriminated against because of his or her disorder, complaints alleging violations of the ADA can be filed with the Equal Employment Opportunity Commission. Complaints may also be filed with local or state fair employment practice agencies under the federal Rehabilitation Act of 1973 or under other federal and local laws. Clinicians can help ensure that epilepsy patients are provided with accurate information that neither mini-
M.J. Morrell / Epilepsy & Behavior 3 (2002) S21–S25
mizes nor exaggerates the potential impact of the disorder. Warnings can be given regarding possible sources of inaccurate information, such as the Internet, and patients should be made aware of reliable information sources, including the Epilepsy Foundation, the American Epilepsy Society, and the American Academy of Neurology. Education about epilepsy can be provided to patients and family members by such organizations. 8. Conclusions
[6]
[7]
[8]
[9]
New treatments for epilepsy offer improved seizure control and fewer treatment-related adverse effects. However, people with epilepsy frequently will have to cope with stigma and its consequences until society puts epilepsy into its appropriate context. This discussion underscores the necessity for treating the ‘‘whole patient’’ and reinforces the role of the health care provider as an advocate for the patient with epilepsy. Epilepsy, like many chronic diseases, impacts the life of the individual in ways that are sometimes obvious and sometimes relatively subtle. The broad community determines, to a great extent, how disabled an individual will be by his or her seizure disorder. Until the community has a basic understanding of epilepsy and no longer fears this common neurological condition, stigma will likely continue to be as much of a challenge for the person with epilepsy as are the seizures.
[10]
References
[17]
[1] Morrell M, Pedley TA. ‘‘The scarlet E’’: epilepsy is still a burden. Neurology 2000;54:1882–3. [2] Fisher RS, Vickrey BG, Gibson P, et al. The impact of epilepsy from the patientÕs perspective. II. Views about therapy and health care. Epilepsy Res 2000;41:53–61. [3] Buck D, Jacoby A, Baker GA, Lye H, Steen N. Cross-cultural differences in health-related quality of life of people with epilepsy: findings from a European study. Qual Life Res 1999;8:675–85. [4] Chaplin JE, Yepez Lasso R, Shorvon SD, Floyd M. National general practice study of epilepsy: the social and psychological effects of a recent diagnosis of epilepsy. Br Med J 1992;304:1416–8. [5] Zahn CA, Morrell MJ, Collins SD, Labiner DM, Yerby MS. Management issues for women with epilepsy: a review of the
[11] [12] [13]
[14]
[15]
[16]
[18]
[19]
[20]
[21]
S25
literature. American Academy of Neurology Practice Guidelines. Neurology 1998;51:949–56. Centers for Disease Control and Prevention. Health-related quality of life among persons with epilepsy—Texas, 1998. MMWR 2001;19:24–6. Begley C, Famulari M, Annegers JF, et al. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia 2000;41:341–51. Civil rights. Epilepsy Foundation web site. Available from: http://www.epilepsyfoundation.org/Advocacy/rights/rights.html. Accessed August 22, 2002. Chaplin JE, Webster A, Tomson T. Factors associated with the employment problems of people with established epilepsy. Seizure 1998;7:299–303. Suurmeijer TP, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning and quality of life in epilepsy. Epilepsia 2001;42:1160–8. Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: a European perspective. Epilepsia 2000;41:98–104. Ryan R, Kempner K, Emlen AC. The stigma of epilepsy as a selfconcept. Epilepsia 1980;21:433–44. Carlton-Ford S, Miller R, Nealeigh N, Sanchez N. The effects of perceived stigma and psychological over-control on the behavioral problems of children with epilepsy. Seizure 1997;6:383–91. Oostrom KJ, Schouten A, Kruitwagen CL, Perters AC, Jennekens-Schinkel A. The Dutch Study Group of Epilepsy in Childhood. ParentsÕ perceptions of adversity introduced by upheaval and uncertainty at the onset of childhood epilepsy. Epilepsia 2001;42:1452–60. Communication at CDC: teens talk straight about epilepsy. Available from: http://www.cdc.gov/communication/campaigns/ Epilepsy.htm. Accessed September 9, 2002. Epilepsy Foundation eNewsletter: teens surveyed about their attitudes on epilepsy. Available from: http://www.efa.org/epusa/ enewsletter/articles/0801/teensurvey.html. Accessed September 9, 2002. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol 1992;15:633–49. Krauss GL, Gondek S, Krumholz A, Paul S, Shen F. ‘‘The scarlet E’’: the presentation of epilepsy in the English-language print media. Neurology 2000;54:1894–8. Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment of epilepsy patientsÕ knowledge of their disorder. Epilepsia 2000;41:727–31. Dunn DW, Austin JK, Huster GA. Symptoms and depression in adolescents with epilepsy. J Am Acad Child Adolesc Psychiatry 1999;38:1132–8. CDC Epilepsy Program. Epilepsy Foundation website. Available from: http://www.efa/org/advocacy/phealth/cdcrec.html. Accessed September 9, 2002.