Journal Logo

Feature

Standing up to stigma in epilepsy

Rank, Wendi Pope MSN, RN, CNRN

Author Information
doi: 10.1097/01.NURSE.0000659324.50792.71
  • Free

Figure
Figure

ACCORDING TO THE CDC, 1.2% of the US population has active epilepsy. This translates to 3 million adults and 470,000 children with epilepsy (see Estimating the prevalence of epilepsy).1

Along with the concerns raised by any chronic disease, people with epilepsy (PWE) often must also handle the stigma that surrounds epilepsy. This article explores the nature of stigma and discusses how stigma negatively affects both adults and children with epilepsy.

What is stigma?

Sociologist Erving Goffman defined stigma as an “attribute that is deeply discrediting and that reduces the bearer from a whole ... person to a tainted, discounted one.”2 Stigma can be further broken down into five elements (see Five elements of stigma).

Stigma can be enacted, felt, or both. Enacted stigma is characterized by outright denial of association. Felt stigma is apprehension of being discriminated against. In other words, enacted stigma is perpetrated and felt stigma is perceived.3

PWE have a long history of stigmatization. In the past, for example, PWE have been characterized as witches. Institutionalizing PWE for mental illness or incarcerating them as criminals occurred up until little more than a century ago.2,4 Even the word epilepsy comes from the Greek word for “to take hold of,” because seizures were thought to be the result of evil gods seizing onto an unclean soul.5

Goffman himself identified PWE as a stigmatized group, noting that society refrains from interacting with PWE out of fear of seizures or ignorance of seizure management. PWE, he pointed out, often avoid interaction with their community due to the unpredictable nature of the disease.2

These mutual attitudes create a loop—the self-imposed isolation not only makes social interaction difficult, but it also limits the public's interaction with PWE, thus limiting their knowledge of the disease.6

Stigma and adults with epilepsy

The effects of stigmatization on PWE are devastating, often having a more deleterious effect on quality of life than the disorder itself. An abundance of research has identified a relationship between stigmatization—both enacted and felt—and a poor overall quality of life in PWE.3,7

In one study, adults newly diagnosed with epilepsy expressed apprehensiveness that they would be stigmatized by friends, family, and colleagues. Many in the study were embarrassed by their diagnosis.3 In another study, some PWE shared their diagnosis only with immediate family, keeping extended family, friends, and colleagues in the dark. This secrecy persisted well beyond the initial diagnosis and was maintained regardless of whether or not the disorder was well controlled.7

Other research documents misgivings over PWE among members of the community at large. Participants in one study did not want their child to marry someone with epilepsy. They also believed that PWE should not be employed as caregivers, no matter how well their disease was controlled. Research shows that PWE are often perceived as irresponsible, unstable, and aberrant, and therefore untrustworthy in certain circumstances.8

Studies have also demonstrated that PWE surrounded by a community of supporters are less impaired by their disease, handle stress better, are more likely to complete college and be paid well, and more likely to be married. Marriage, in turn, buttresses communal support for PWE. Conversely, PWE who do not have adequate support are less likely to be married. Both felt and enacted stigma are thought to be culprits in the greater unemployment and underemployment rates among PWE.3,7

In one study, PWE who felt stigmatized were more likely to struggle with comprehension of health literature, complicating their ability to learn about epilepsy and manage their condition. The inability to understand and possibly control the disease compounds felt stigma.3 Moreover, felt stigma may inhibit the individual from seeking healthcare and adhering to prescribed treatments, which can have disastrous consequences, such as poor seizure control.9

Diminished confidence is another casualty for the stigmatized PWE.10 One study showed that stigmatized PWE were more likely to employ ineffective coping strategies when faced with stressful situations. Poor coping skills can further stigmatize and isolate PWE. However, the inverse is also true—PWE reporting a strong support network and a well-controlled disease state were more likely to have healthy coping mechanisms.3

Suffering the lost opportunities discussed above are stressors themselves for people who feel stigmatized. Even the fear of stigmatization is a stress. This constant stress acts adversely on one's psychological, social, and physical well-being.9 For some PWE, stress is a seizure trigger.8

PWE have concomitant anxiety, depression, and other psychiatric diagnoses more frequently compared with the general population and even other chronic disease sufferers. In one study, PWE were also more likely than those in the general population to report a history of sexual or domestic abuse. The confluence of epilepsy, stigma, and abuse may, at least in part, be responsible for the higher rates of depression, anxiety, and other psychiatric comorbidities seen in PWE.8

Research suggests that stigmatization may give rise to a host of additional concerns unique to seizure disorders. Fear of experiencing a seizure alone or, paradoxically, while in public is a significant stressor for many PWE. Injury or death from their seizure disorder rates high as a concern, as does being an encumbrance to others. Romantic relationships and, by extension, bearing and raising children are distressing concepts to stigmatized PWE. Apprehension about their future, treatment for their disease, and their independence are all sources of stress for stigmatized PWE.7

Stigma and children with epilepsy

Children are not exempt from fears shared with their adult counterparts. Studies show that children with epilepsy (CWE) are concerned they will be mocked if they experience a seizure in front of their friends, and a study of teens found the fear of stigma eroded their confidence.2 One study showed that not only had CWE and their families been subjected to both felt and enacted stigma in various ways, but also that their parents had hidden the disease from others.11

Research shows that more than half of parents of CWE are diagnosed with depression and anxiety. Families of a CWE report more stress and have inhibited behavioral and adjustment abilities. These parents are also more likely to report an unsatisfactory relationship with their child.12 One study noted that parents of CWE felt more “helplessness” if the diagnosed child was a daughter rather than a son or if the child was prescribed more than one antiepileptic drug.13

CWE are influenced not only by their own perceptions, but also by their parents' attitudes. Parental apprehension can inhibit the child's opportunities, contributing to the poor education and underemployment seen in adult PWE.7

Addressing stigma

Since 2001, the Epilepsy Foundation and the CDC have launched several initiatives to combat stigma.10 These educational programs are specific to various populations, such as children, young adults, and racial minorities. Multimedia platforms such as TV have been used, as well as education accessible online and through social media. Not only were popular personalities such as celebrities used as part of these campaigns, but the programs also combined with other entities to distribute education. These included religious institutions, schools, companies, and community centers. The Epilepsy Foundation and CDC were able to point to various markers of success, such as increased website traffic, requests for information about seizures and epilepsy, and participation in public events.14

For much of the public, apprehensiveness about PWE is related to fear of witnessing a seizure and not knowing what to do. Making people aware of seizure management techniques can ease that concern.2,15

Exposure to PWE is another simple solution. Encouraging PWE and their families to discuss their disease can increase awareness, dispelling some of the stigma.2

Education should always be presented in a positive context. For example, assuring someone that PWE can hold employment in a caregiver industry is better than saying that it is a misconception that PWE are unreliable, which tends to reinforce the negative assumption.4 Expanding the use of social media platforms may be the next step in the evolution of stigma reduction.10

Healthcare professionals should also be aware of the stigma of epilepsy. Discussing stigma with their patients and families and being alert to the socioeconomic, mental, and physical effects of stigma can be beneficial for their patients.3,11 In one study, the simple act of educating PWE and their families about their disease eased anxiety and improved family dynamics.12

Some literature suggests that methods used to decrease the stigma of mental illness can be applied to reduce the stigma of epilepsy.10 For example, educating students about mental illness impacted their perception of those diagnosed with a mental disorder. Similarly, police have been educated with an eye toward decreasing arrests and physical altercations with the mentally ill.16 Education imparted by people with a mental health diagnosis can help reduce the stigma of mental illness, and education about the biology and etiology has had some impact on the perceptions of mental illness as well.17 If these methods have an impact on mental health stigma, they may also work to dispel the stigma of epilepsy.

Education through conferences and even demonstration has had some success with stigma, as has audiovisual media that contained both lecture and demonstration. In evaluation, much of the education that has positively affected stigma has been geared toward healthcare and education professionals. These education programs were not easily translated into large-scale awareness campaigns. Evaluation of the long-term influence of such education has been limited.10

Legal correction can be complex. While PWE are protected under the Americans With Disabilities Act (ADA), applying its protections can also worsen stigma.2,18 Applying for ADA protection identifies PWE as disabled, an identification they may not want.

Positive outcomes through education

Educating the public, supporting PWE and their families, and being cognizant of the effects of stigma can improve quality of life for PWE. Addressing the mental and physical effects of stigma can have a positive outcome for your patients, and identifying support can ease self-stigmatization. To that end, the Epilepsy Foundation (www.epilepsy.com) is a source of education and support for professionals and PWE alike.

Estimating the prevalence of epilepsy19

In 2015, the CDC published national estimates of the prevalence of active epilepsy nationally based on national data sources that included the 2015 National Health Interview Survey for adults, the 2011-2012 National Survey of Children's Health, and the 2015 Current Population Survey. The CDC reported that in the US, active epilepsy is experienced by 3 million adults age 18 and older and 470,000 children age 17 and younger. Adults classified as having active epilepsy reported a history of physician-diagnosed epilepsy and were taking medication to control it, had experienced one or more seizures in the past year, or both. Estimates for children were based on a cross-sectional telephone survey conducted in 2011-2012 in which parents or guardians were asked if a healthcare provider had ever told them that their child had epilepsy or seizure disorder, and if so, if their child currently has epilepsy or seizure disorder (current epilepsy).

Five elements of stigma9

  • identification of individual differences
  • connecting differences to an objectionable trait
  • dissociation of the objectionable person(s) from everyone else
  • segregation of, and subsequent loss of, position for the objectionable person(s)
  • imbalance of power between the nonstigmatized and the stigmatized.

REFERENCES

1. Centers for Disease Control and Prevention. Epilepsy Fast Facts. 2018. www.cdc.gov/epilepsy/about/fast-facts.htm.
2. Epilepsy Foundation. www.epilepsy.com.
3. Bautista RE, Shapovalov D, Shoraka AR. Factors associated with increased felt stigma among individuals with epilepsy. Seizure. 2015;30:106–112.
4. Sajatovic M, Herrmann LK, Van Doren JR, et al. A randomized prospective pilot trial of Web-delivered epilepsy stigma reduction communications in young adults. Epilepsia. 2017;58(11):1946–1954.
5. Epilepsy Canada. History of epilepsy. www.epilepsy.ca/history-of-epilepsy.html.
6. Fernandes PT, Salgado PCB, Noronha ALA, Barbosa FD, Souza EAP, Li LM. Stigma scale of epilepsy: conceptual issues. J Epilepsy Clin Neurophysiol. 2004;10(4):213–218.
7. Aydemir N, Kaya B, Yıldız G, Öztura I, Baklan B. Determinants of felt stigma in epilepsy. Epilepsy Behav. 2016;58:76–80.
8. Nimmo-Smith V, Brugha TS, Kerr MP, McManus S, Rai D. Discrimination, domestic violence, abuse, and other adverse life events in people with epilepsy: population-based study to assess the burden of these events and their contribution to psychopathology. Epilepsia. 2016;57(11):1870–1878.
9. Link BG, Phelan JC. Stigma and its public health implications. Lancet. 2006;367(9509):528–529.
10. Herrmann LK, Welter E, Berg AT, Perzynski AT, Van Doren JR, Sajatovic M. Epilepsy misconceptions and stigma reduction: current status in Western countries. Epilepsy Behav. 2016;60:165–173.
11. Benson A, O'Toole S, Lambert V, Gallagher P, Shahwan A, Austin JK. The stigma experiences and perceptions of families living with epilepsy: implications for epilepsy-related communication within and external to the family unit. Patient Educ Couns. 2016;99(9):1473–1481.
12. Conway L, Smith ML, Ferro MA, et al; PEPSQOL Study Team. Correlates of health-related quality of life in children with drug resistant epilepsy. Epilepsia. 2016;57(8):1256–1264.
13. McLaughlin RM, Schraegle WA, Nussbaum NL, Titus JB. Parental coping and its role in predicting health-related quality of life in pediatric epilepsy. Epilepsy Behav. 2018;87:1–6.
14. Price P, Kobau R, Buelow J, Austin J, Lowenberg K. Improving understanding, promoting social inclusion, and fostering empowerment related to epilepsy: Epilepsy Foundation public awareness campaigns—2001 through 2013. Epilepsy Behav. 2015;44:239–244.
15. Centers for Disease Control and Prevention. Seizure first aid. 2019. www.cdc.gov/epilepsy/about/first-aid.htm.
16. Collins RL, Wong EC, Cerully JL, Schultz D, Eberhart NK. Interventions to reduce mental health stigma and discrimination: a literature review to guide evaluation of California's mental health prevention and early intervention initiative. Rand Health Q. 2013;2(4):3.
17. Yamaguchi S, Mino Y, Uddin S. Strategies and future attempts to reduce stigmatization and increase awareness of mental health problems among young people: a narrative review of educational interventions. Psychiatry Clin Neurosci. 2011;65(5):405–415.
18. Burris S. Stigma and the law. Lancet. 2006;367(9509):529–531.
19. Centers for Disease Control and Prevention. National and state estimates of the numbers of adults and children with active epilepsy—United States, 2015. MMWR Morb Mortal Wkly Rep. 2017;66(31):821–825.
Keywords:

children with epilepsy; CWE; epilepsy; people with epilepsy; PWE; stigma

Wolters Kluwer Health, Inc. All rights reserved