“Epilepsy is a neurological condition in which a person has repeated seizures over time.”
Epilepsy is a diverse neurological condition where excessive disruption to the brains normal electrical activity causes recurring seizures or brief episodes of altered consciousness. Around 65 million people worldwide have epilepsy, approximately 40% of who live in the developing world. Popularly misconceived as a mental illness, Epilepsy is a non-communicable condition and it can develop after injury or damage to the brain. It can affect anyone, at any age and from any walk of life.
Misconceptions surrounding epilepsy have existed throughout history and across the world. As a result many people with epilepsy experience stigma as an overriding reality of their condition. This inevitably leads to a range of psychological and social difficulties, the consequences of so, can vary from country to country, based on historical and cultural differences. And so it is an unfortunate reality that some of the most significant problems encountered by people with epilepsy are often not related to the severity of the condition, but are a result of stigma.
Stigma is defined as the relationship between ‘the differentness of an individual and the devaluation society places on that particular differentness.’ Epilepsy stigma can impact on every part of life from education and employment to family and community life.
Even more so, evidence suggests there is an established correlation between the level of stigma experienced and psychosocial problems such as anxiety, depression, self-esteem and life satisfaction.
While this could be partly attributed to relative poverty within these groups, another factor has been pointed out as significant in many communities – epilepsy stigma.
In order to fully grasp the psychological and social consequences of stigma, it’s important to look at the different ways in which stigma can be portrayed:
– Felt stigma, relates to an individual’s perception of being stigmatised
– Enacted stigma, refers to the actual event of being stigmatised
– Courtesy stigma, extends beyond an individual to their family members.
In the developed world the emphasis tends to focus on felt stigma while in other parts of the world enacted and courtesy stigma prevail. However, in all communities worldwide, stigma can impact on every part of life.
Of course there is nothing new about stigma. The association of epilepsy and stigma extends back in history and across many cultures. In ancient and primitive societies, epilepsy was often believed to originate from evil causes and to relate to the possession of demons.
Although there have been improvements in public attitudes towards epilepsy, the remnants of archaic ideas continue to pervade people’s concepts of epilepsy worldwide.
In many African countries epilepsy is considered to be contagious and caused by supernatural powers. A Zambian report revealed that people with epilepsy felt they were treated as inadequate and consequently preferred to avoid social contact.
More extreme examples of social isolation are reported in resource poor communities in developing countries. For instance, in small communities in Sub-Saharan Africa people with epilepsy are often required to use separate utensils, eat from different dishes, sleep separately away from the rest of the household and are kept hidden from visitors.
Stigma extends into the workplace. A study from Kerala in South India revealed that unemployment rates are around three times higher for people with epilepsy compared to the general population. Fear of having seizures and seizure related falls in the workplace, inadequate education and anti-epileptic drug induced fatigue were given as reasons for unemployment.
In Pakistan, a study showed that women with epilepsy often believed they were dangerous and encouraged others to avoid them. And research in China highlighted epilepsy as being socially disruptive with far-reaching impact on quality of life. High levels of anxiety were reported in relation to embarrassment and loss of identity from having a seizure in public, perhaps not surprising given that in Chinese literature the first character in the word denoting epilepsy carries a negative connotation similar to ‘insane’ and ‘crazy’.
Even in the twenty-first century, in African Cameroon, people still believe that people with epilepsy are inhabited by the devil; in Liberia the cause of epilepsy is related to witchcraft or evil spirits; and most traditional healers in Swaziland mention sorcery as the cause of epilepsy. The fact that in Senegal those who suffer from epilepsy are held in high esteem stands in stark contrast to the situation in its surrounding countries. In Asia, the situation is not so different. In Indonesia for instance, epilepsy is either considered as ‘karma’ or as a punishment from unknown dark forces. In India, especially in the rural areas, epilepsy is often considered to be due to an evil spirit, which needs to be exorcised – by tying the person to a tree, beating him, cutting a portion from his hair from the scalp, squeezing lemon and other juices on his head or starving him, to mention just a few methods.
Up until 1999 India was the only country in the world where epilepsy was equated with the term ‘insanity’ under the Hindu Marriage Act 1955 and the Special Marriages Act 1958, which specified marriage can be legitimate ‘if at the time of marriage neither party suffers from recurrent attacks of insanity or epilepsy.’ A tireless campaign by the Indian Epilepsy Association led to an amendment that removed the apparent equivalence of insanity from epilepsy. In other countries too, legislative efforts in the form of acts such as the Americans with Disabilities act aim to support the fight against stigma.
Although legislation has the potential to form the basis of social acceptance, it could push discrimination ‘underground,’ ultimately it is not possible to legislate for attitudes which lie beneath stigma. This raises the importance of addressing stigma at more localized levels too. Education has been key in targeting this and several teaching based projects have been introduced around the world.
Epilepsy was often recorded in ancient times. Throughout the ages, in different parts of the world and in different cultures, epilepsy has been associated with many misconceptions. However, it isn’t hard to understand why epilepsy has been so mysterious. Those with epilepsy were seen as “being chosen” or “being possessed,” depending on the popular belief; this affected treatment and society’s attitudes towards people with epilepsy.
Oswei Temkin wrote in his book “The Falling Sickness,” that seizures were described in ancient Mesopotamia and were attributed to “The Hand of Sin,” the god of the moon. The Hammurabi code, dated 1780 B.C., dictated that the person with epilepsy could not marry, or testify in court, and the purchase contract of a slave was considered void if the slave suffered an epileptic seizure within the first three months of purchase.
In the past, the popular belief was that epilepsy was contagious. Dating many years back when people used to spit at a person with the condition and refused to use the same dish. In the early
Christian church, clergy and synods segregated the possessed from the faithful, because they were afraid that the possessed would desecrate the holy objects and would
infect the communion plate and cup. This belief was also common during the late Middle Ages. Berthold of Regensburg, a 13th century German preacher, wrote of the contagious character of the infection carried by the patient’s “evil” breath. In the 15th century a professor wrote: “Therefore, neither talk nor bathe with him, since by their mere breath they infect people”. In the 18th century, epilepsy was still believed to be infectious.
In this present day, despite the significant clinical and therapeutic progress of the last century, people with epilepsy continue to face discrimination, not only in the developing
world but also in the supposedly enlightened West. A survey performed in Kentucky, U.S.A., by Baumann et al., showed that parents were more likely to rate epilepsy than, for example, asthma, as having a negative effect in the classroom. They also rated the children’s future quality of life as significantly lower if they had epilepsy rather than asthma. Legislation based on centuries of stigma has either been repealed only relatively recently or, in many countries, still exists. In the United States, for instance, people with epilepsy were forbidden to marry in 17 states, until 1956. The last state to repeal this law did so only in 1980. In 1956, 18 states provided for the sterilisation, on eugenic grounds, of people with epilepsy. In the United Kingdom, a law prohibiting people with epilepsy from marrying was repealed in 1970. In some parts of the world, epilepsy is still commonly viewed as a reason for annulling marriages or simply prohibiting them. Unemployment and underemployment among persons with epilepsy exists worldwide. In the United States, the first law to prohibit discrimination against people with physical disabilities was passed in 1973; however, this had limited scope, and it was not until 1990 that the passage of the Americans with Disabilities Act provided a more uniform remedy to persistent discrimination. Until the 1970s, for instance, it was still legal in the United States to deny persons with seizures entry to restaurants, theatres, recreational centres and other public places. These employment and legal restrictions further perpetuated the stigma attached to epilepsy in modern society.
Upon reading all that I had read in regards to the stigma that had once surrounded men, women and children living with epilepsy, that still to this very day surrounds those living with epilepsy in various parts of the world, I could no longer contain my emotion. I sat back within my chair, removed my glasses, looked up a the pale blue sky as the tears streamed down my face. I allowed myself the moments to weep. My heart swelling with compassion for those who had before me been ridiculed, mocked, spat upon, injured, and worse for having a condition that they did not ask for. A condition that they surely prayed to be cured from. A condition that frightened themselves just as much as it frightened those witnessing the seizure happening. A condition that caused them to be robbed of some of the most amazing joys in life like marriage. Starting a family. Oh, the aching and cracking I felt taking place within my heart was overbearing. Causing me to instantly call out to The Father in prayer. To know too, that in various areas within our world today that these stigmas still remain hangs a heavy weight around my heart. However in reading what I have read I have found my heart not only swollen with compassion but ignited with an even more intense drive of willingness to create change and a better understanding of this condition that I and 65 million of us worldwide live with.
The mistreatment that those of us living with epilepsy had faced in the past, are facing in the present, that we still may see in various ways, its time to put an end to epilepsy stigma once and for all. Completely. Entirely. Epilepsy is not a “curse” nor should be looked upon or felt like a burden. Those diagnosed with the condition must be given equal treatment and a better understanding wherever you go.
Epilepsy education and awareness is needed. The stigma must be broken.
I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!