Epilepsy: the Stigma and Survival Essay

Abstract People with epilepsy are socially discriminated against on the grounds of wide-spread negative public attitudes, misunderstandings, and defensive behavior. Although few studies have been conducted to explore the experience of stigma in children and adults with epilepsy, it appears that these involved do worry about the problem and that this worry can affect emotional development. Though the most overt examples of discrimination and prejudice have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large.

The word, Epilepsy, originates from the ancient Greek word “epilepsia”, meaning seizure. Since the dawn of time, epilepsy has affected millions of people, from beggars to kings (Devinsky, 2002). It’s one of the oldest conditions of the human race with a rich and distinguished history. The earliest references to epilepsy dates back to the first millennium B. C. in Mesopotamia, where epileptic auras, generalized convulsions and other aspects of what these ancient people called “the falling sickness” were thought to be caused by demons possessing the person (Devinsky, 2002).

In ancient Egypt, epilepsy was considered a sacred disease that a god had entered the person. From around the 9th century, particularly in German and English-speaking regions, Christians considered Saint Valentine (SV) to be a significant patron saint of the ‘‘falling sickness” (Masia et al, 1999, p27). From the 15th century to the present day, Christian art has portrayed people with epilepsy as attributes in illustrations of Saint Valentine (Masia et al, 1999, p27).

According to the Epilepsy Foundation of America (2006), in many countries legislation reflects years of misunderstanding about epilepsy for example: in both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages; in the United Kingdom, a law forbidding people with epilepsy to marry was repealed in 1970; in the United States, until the 1970s, it was legal to deny people with seizures access to restaurants, theatres, recreational centers and other public buildings. Today’s knowledge of the disease can better assist individuals’ needs than it did years back.

New discoveries and advancements in how to deal and treat the disease are being made everyday. According to the EFA (2009), current estimates, approximately 2. 7 million Americans have epilepsy, and about 200,000 new cases are diagnosed each year. An estimated 10% of Americans will experience, at least, one seizure at some point, one in 40 people will experience a febrile seizure (due to high fever) sometime in their life and approximately 3% will be diagnosed with chronic epilepsy by age 80 (Bazil, 2004).

The prevalence of chronic epilepsy is even higher in resource-poor countries with 6 to 10 cases per 1000 reported. Research indicates that higher rates of epilepsy are experienced by racial and ethnic minorities, people of lower socio-economic status living in rural areas, and caucasian males (Hayden et al, 1992, p192). It’s the second most serious neurological disorder, after migraines. A chronic disorder characterized by recurrent seizures that are paroxysmal, abnormal electrical discharges of the central nervous system that cause the signs and symptoms that interfere with normal functioning.

Epilepsy is classified into three divisions; partial (focal) epilepsy, the seizures are focused to a limited portion of the brain; generalized epilepsy, the seizures effect the whole brain; and partial seizures with secondary generalization, the seizure begins in a focal area and travels to effect the whole brain. For an adult, the most common area of the brain for a seizure to occur is the temporal lobe. There may be a secondary reason for this consisting of a toxic infection, metabolic, low blood sugars or trauma to the brain.

For children, the common type seizure is an absence seizure. This will affect the whole brain and consist of staring with unresponsiveness lasting up to 5 minutes. This type needs to have solid diagnosis with a ruling out of Attention Deficit Disorder where the child may have trouble keeping focused in class and daydream. Seizures may be unprovoked and everyone has a potential, or a certain threshold, to have a seizure. When a person has two or more unprovoked seizures, they are considered to have epilepsy. They may have many symptoms before the episode, called auras.

These symptoms may consist of nausea, a blank stare, lip smacking, or single jerk movements of arms and legs. This warning may be useful and help prepare a person that might have injury, fall or harm to the body; they may have a chance to lie down, move furniture, and notify someone near for the chance of their episode. Today, the subject of epilepsy is one we tread around uncomfortably. People with epilepsy experience reduced access to health and life insurance, a withholding of the opportunity to obtain a driving license, hold a job, or participate in social activities (Stigma, 2002, p14).

In most people, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder (Stigma, 2002, p14). According to Ervin Goffman (1963), “Stigma exists when a person is identified by a label that sets the person apart and links the person to undesirable stereotypes that result in unfair treatment and discrimination which leads to unequal outcomes. ” Concerns about the effect of having seizures on an individual’s emotional state and behavior are often discussed.

The majority of person/s with this disorder has no more emotional baggage to carry than the next person. For an epileptic, a range of factors can combine to produce heightened sense of anxiety, depression, low self-esteem, and feeling of isolation. These feelings are caused by the strains of dealing with our society’s hostile and prejudice attitude toward certain disabilities as such this. Sometimes, medication and the seizures themselves will affect a person’s emotional state and behavior without the person realizing their manner (Stigma, 2002, p13).

While most of the people with this condition learn how to deal with feelings, some may respond by reacting over aggressively, embarrassed, or depressed, with a greater chance of having a seizure due to the pressure they feel. Workplace disadvantages for an epileptic have been well documented for more than 30 years. Both unemployment and underemployment rates are typically higher for people with epilepsy than for the general population (Equal Employment of Commission, [EEOC], 2009).

Furthermore, the higher rate of unemployment for people with epilepsy in the United States has remained virtually unchanged across recent decades. Field studies investigating epilepsy-based workplace disadvantages have contributed to our understanding of workplace barriers faced by individuals with epilepsy. In a study of employers from several hundred companies in the United Kingdom, 72% of respondents reported that most or all of the positions in their company would be unsuitable for a person with epilepsy (Stigma, 2002, p11).

However, employers in these field studies generally have not listed stigmatizing beliefs as a reason for their disinclination to have individuals with epilepsy work at their companies. Instead, employers have frequently cited factors such as concerns about employee safety, social discomfort of co-workers, and lowered productivity as reasons for their preference not to hire people with epilepsy. Arguably, some jobs might indeed present safety concerns for the subset of individuals with epilepsy who have frequent, severe seizures.

It is reasonable to question whether epilepsy-based workplace bias would be eliminated if concerns about employee safety, productivity, and co-worker apprehension were removed (Stigma, 2002, p11). However, it’s predicted and expected that individuals associated with epilepsy would continue to face disadvantages in the workplace, even if the concerns were removed, due to epilepsy-based stigma. We know that the general population is unfamiliar with seizures, only if a close friend or family member is affected. Society believes that epilepsy is contagious and hesitates to help or touch the person who has fallen during a seizure.

Experiences of public seizures has an epileptic with ‘personal worries of self-perceptions’ (including embarrassment and stigma) with ‘worry from the point of view of the general public’ and ‘worry that their seizure may frighten or distress those that witness them (Bazil, 2004). In many countries, legislation reflects centuries of misunderstanding about epilepsy. For example: in Cameroon, it is believed that people with epilepsy are inhabited by the devil; in China, epilepsy diminishes the prospect of marriage, especially for women; in Indonesia, epilepsy is often considered as a punishment from unknown dark forces (Choi et al, 2001, p99).

According to Hayden et al. (1992), there are three erroneous beliefs that are said to characterize public ignorance and misconceptions (p191). Firstly, there is the example that the public tend to classify epilepsy in terms of tonic clonic (grand mal) seizures, when in fact there are many different forms of epilepsy. A seizure may be anywhere from a stare or a feeling of nausea to the original truth of a person shaking. Secondly, there is the classification of epilepsy as a ‘mental disorder’ rather than a physical one.

Finally, there is the association of epilepsy with the possession of numerous negative and varied ant-social personality traits (Kohn, 2000). The perceptions of epilepsy are often inaccurate; this can be a contributing factor to stigmatization. These individuals have ability to successfully perform all types of jobs including heading corporations, medical positions, teaching, and working in customer service positions. They are able to live a healthy and successful life that may include marriage and children.

Employment discrimination is one of the biggest stigmatized problems affecting people with epilepsy today (Devinsky, 2002). Many employers believe that epileptics are unable to operate certain types of machinery, drive, or use computers. Those with epilepsy also can perform jobs that might be considered “high risk,” such as police officers, firefighter, welder, or a butcher. Even with that, employers assume these employees should be banned jobs (EFA, 2001). According to the Equal Employment Opportunities Commission, there is no evidence that people with epilepsy are more prone to accidents on the job than anyone else.

In association with the EEOC, the American with Disabilities Act is a federal law that prohibits discrimination against individuals with disabilities and was signed into law on September 25, 2008 and became effective January 1, 2009 (EEOC, 2004). The ADA limits the medical information that an employer can seek from a job applicant. Included is the Public Law 101-336, that prohibits discrimination on the basis of disability in employment, activities of state and local governments, public and private transportation, public accommodations, and telecommunications.

Many of the ADA’s provisions are borrowed from Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination on the basis of disability by any entity that receives federal funding. Prior to the enactment of the ADA, several states and districts passed statutes and ordinances which bar discrimination on the basis of a disability (EEOC, 2004). This means that an employer cannot ask an applicant questions such as: whether he/she has epilepsy or seizures; whether he/she uses any prescription drugs; or whether e/she ever has filed for workers’ compensation or was injured on a job. Because this law makes several significant changes, including changes to the definition of the term “disability,” the EEOC continuously evaluates the impact of this on people. When a person is diagnosed having epilepsy, they may suddenly find that they are treated differently and sometimes unfairly, also stating, “there is no general ban on employment discrimination against persons with handicaps in the United States” (EEOC, 2004). Unfortunately, some persons will still find that they have no protection at all.

In the court case, Cash v. Smith, 231 F. 3d 1301 (11th Cir. 2000), a typesetter sued her former employer for discrimination under the ADA, the Rehabilitation Act and the Family Medical Leave Act after it allegedly disclosed her medical condition to her coworkers and refused to promote her. The court found for the employer, finding that the ADA and Rehabilitation Act did not require an employer to keep information about an individual’s medical condition confidential when that information is voluntarily disclosed by the employee

An employer may ask questions or require an employee to have a medical examination only when it has a legitimate reason to believe that epilepsy, or some other medical condition, may be affecting the employee’s ability to do their job. The ADA does not require applicants to disclose that they have epilepsy or another disability unless there will be a need for reasonable accommodations (EEOC, 2004). Some individuals with epilepsy, however, choose to disclose their condition to eliminate any surprise should a seizure occur in the workplace (Spear et al. 005, p. 628). Often the decision to disclose depends on the type of seizure, the need for assistance, frequency of seizures, and the type of work for which the person is applying. An employer must prove the employee has a chance of harm and there are no specific precautions or changes available to prove on due to the type of work. As in the employment discrinination court case than involved a Baltimore police officer that was awarded 225,000 dollars. William Blake brought a suit against Baltimore County, Maryland after a commanding officer ordered hat he undergo a neurological testing to determine if he was fit for duty ten years after he experienced a single seizure and received clearance to return to work. The ADA outlaws disability-based discrimination, someone cannot be denied a job or fired from one because of the epilepsy (Devinsky, 2002). According to the Epilepsy Foundation, the polic department was required to “make reasonable accomodations for his disability unless this imposed an undue burden on the employer. The court found that the demanded testing amounted to disability-based discrimination, and Mr. Blake alleged that the testing was ordered in retaliation for his testimony in previous case he was testifying for as a witness (EEOC, 2004). The commanding officer provided no good reason for the neurological testing and, with the help of a co-worker that testified. Mr. Blake was in no risk harmful to himself, co-workers, or the community. The court settled that there was an invasion of his rights under the ADA. Following the ADA justifications, January 2010, the U.

S. Department of Justice opened an investigation into whether Baltimore County officials have established a pattern and practice of violating the rights of other employees under the ADA from previous lawsuits. If an applicant voluntarily discloses that she has epilepsy, an employer may only ask two questions: whether she needs a reasonable accommodation, and if so, what type (EEOC, 2004). While this condition holds a stigmatism with ordinary people, the news of a popular or famous individual having seizure shows an increase in support.

Today there are people with epilepsy represented among the writers, artists, scientists, politicians, and sports stars. Notable figures in ancient history, such as Socrates, Alexander the Great, Julius Caesar, Alfred Nobel, Joan of Arc and Thomas Edison suffered from chronic epilepsy. In more recent years, Danny Glover, Prince, Patrick Dempsey and Paul Maynard have been affected, but yet have a following of supporters and fans. This support has the everyday, ordinary epileptic wondering why they’re affected more then a famous epileptic suffering the same way.

Like all other chronic conditions, epilepsy forces an individual to focus on what is important in life. It requires constant attention to a treatment p1an, which if followed, teaches the person to control his or her own life. Epilepsy can even make a person mentally stronger because of the challenge it presents. The same skills built by controlling epilepsy will be valuable assets when it comes to accomplishing other goals in life. Epilepsy will continue to be a threat to our very existence for as long as we continue to exist.

But as our knowledge about the disease continues to increase as it has over the past few years, we will be able to better cope with the causes and effects of the disease. Today, a great deal is becoming more well-known about epilepsy and we are able to answer many questions about the disease, such as, its means of classification, its causes, and its means of diagnosis and treatment than we were unable to answer to years ago. Epilepsy is not only a medical and personal condition, but also a social and public health issue which requires multi-disciplinary and multi-level intervention.

Together with the individual treatment of medical professionals, self-management, and social awareness, patients and the public will become be more adhered to enhance the quality lives of epileptics and promote a more inclusive society that accepts their fellow friend. References 1. Goffman, Erving. Stigma. Prentice-Hall: Englewood Cliffs, New Jersey, 1963. 2. www. epilepsyfoundation. org 3. Living Well Epilepsy and Other Seizure Disorders by Carl W. Bazil, M. D. , Ph. D. Published by Harper Resource, 2004 4. www. eeoc. ov/facts/epilepsy. html Questions and Answers about Epilepsy in the workplace and the American with Disabilities Act, 2004 5. Epilepsy: Patient and Family Guide, 2nd edition, by Orrin Devinsky, MD Published by F. A. Davis Company, 2002 6. Kohn L, Corrigan J, Donaldson M, eds. To Err is Human: Building a Safer Health System. Washington D. C. : Committee on Quality of Health Care in America, Institute of Medicine. National Academy Press, 2000. 7. Spear SJ, Schmidhofer M. Ambiguity and workarounds as contributors to medical error.

Ann Intern Med 2005; 142:627-630 8. www. ada. gov/enforcingtheada:TheStatusReportfromtheDepartmentofJustice, April-September 2009, Issue 2 9. Masia, S. L. , ; Devinsky, O. (1999). Epilepsy and Behavior: A Brief History. 1:27-36. 10. Jacoby A. Stigma, epilepsy and quality of life. Epilepsy Behavior 2002;3:10-20 11. Hayden, M. , Penna, C. , ; Buchanan, N. (1992). Epilepsy: patient perceptions of their condition. Seizure. 1: 191-197 12. Choi, S. J. , Hong, S. B. , ; Seo, D. W. (2001). Stigma and quality of life in epilepsy. Epilepsia. 41: 98-104.