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º£½ÇÉçÇø — In 2005, Vinay Jani experienced his first seizure, or daura in Hindi. The ensuing diagnosis of epilepsy shocked him, but he found support among family and friends.

“Initially, I went into [a] depression,” said Jani, now an epilepsy advocate. “The real part regarding epilepsy is accepting it in a positive way. Now…I am very much straightforward that I am a [person with epilepsy].”

Unlike Jani, many  of epilepsy due to fears of discrimination and stigmatization.

“People are not aware of what epilepsy is,” said Jani. “If I go to [a small village], they just think that seizures are a kind of black magic.”

Epilepsy terminology in India and stigma

The terminology associated with epilepsy both stems from and feeds into the misinformation surrounding the condition. The word daura is associated with insanity, so many people in India see epilepsy, or mirgi, as a mental illness. And until 1999, the Hindu marriage statute equated epilepsy with insanity, declaring both conditions as grounds for divorce.

Recent studies have found that marriage is still difficult, particularly for women with epilepsy;  found that 42% of women with epilepsy had concealed their condition before marriage, and those marriages were more likely to result in separation or divorce.

The stigma also can affect , as well as whether countries pass laws to protect the rights of people with epilepsy from discrimination.

“Driving was my passion,” said Jani. “And I had to stop, as laws in India do not allow [people with epilepsy] to drive, even for those people who are living seizure free.”

Europe and North America

Although the understanding of epilepsy as a neurological condition has advanced dramatically over the past 150 years, the words used to describe the condition reflect historical perceptions that are no longer accurate.  countries once associated epilepsy with demonic possession. In French, for example, epilepsy was once called le mauvais ma1 or la male passion (the wicked disease).

Epilepsy was associated with degeneracy until World War II. People with epilepsy tried to hide their condition, and many were sent to asylums. Some countries also sterilized—or even euthanized—people with epilepsy to stop them from “corrupting” the rest of the population.

“If you had epilepsy, you just kept it quiet,” said Simon Shorvon, a clinical neurologist at the National Hospital for Neurology and Neurosurgery in London, England and author of the 2023 book . “It would be suicide if you didn’t. And there was not really any reasonable treatment either, so there [was] little point in advertising the fact.”

After the Nazi regime’s Euthanasia Program and the genocide of European Jews during World War II, attitudes toward people with epilepsy changed. Asylums were shuttered and laws were passed to protect the rights of people with epilepsy. Epilepsy advocacy and education organizations also became more common.

The words epilepsy and seizure are often thought to have no negative connotations. However, epilepsy comes from the Greek verb epilambanein, which means to take hold of or seize. This word is associated with spiritual possession, and its meaning survives in the word seizure.

People’s incomplete understanding of what a seizure is also contributes to stigma, said Elizabeth Dueweke, a consultant at IQ Solutions in Washington, D.C. (USA), who was diagnosed with epilepsy 17 years ago.

“The tonic-clonic seizures you see in the media, how violent they look, and how people react creates this image,” she said. “And that bleeds into the perceptions of epilepsy. [Those] seizures are very scary to see, and I think that is where a lot of the stigma comes from.”

Latin America 

The Aztecs and Incas associated epilepsy with religion, magic, and death. Many Inca terms for epilepsy translate to “disease of the dead,” and some sources suggest the Mayan term zac cimil translates to both “epilepsy” and “pseudo-death.”

Pre-Columbian people also may have referred to epilepsy as yollo mimiquili (Aztecs) or sonko nanay (Incas), which translate to “disease of the heart.”

Diseases, including epilepsy, were seen as a manifestation of some type of relationship with supernatural forces. The Incans saw those with epilepsy as having a closer relationship with these forces, and some believed that people with uncontrolled seizures were destined to become priests. The Aztecs, on the other hand, thought epilepsy was divine punishment for a sin.

The indigenous terms were lost during the colonization of the region; a variant of the English term, epilepsia, is now commonly used in Spanish and Portuguese. Yet a  study found that many Latin Americans still believe that epilepsy has a supernatural cause.

South Africa and Morocco

Many languages in Africa associate epilepsy with falling. In South Africa, the condition is referred to as isifo sokuwa (Xhosa) or isithuthwane (Zulu)—the illness of falling.

These terms also are associated with curses and possession, such that  refer to epilepsy only as lento—a thing. They say that “epilepsy cannot be called by its name because it is a shameful illness.”

In Morocco, epilepsy is called assarε—to fall. The term has spiritual connotations that may lead to people seeking out traditional healers, rather than neurologists.

“There are some people who refuse to go to a neurologist,” said Zouhayr Souirti, a neurologist and director of the outpatient center at Hassan II University Hospital in Fez. “For them, [the neurologist] is not well-instructed. He is not able to help with something relating to a spirit.”

Attitudes may be changing, however. Souirti is the senior author of a that found that 79% of Moroccans surveyed—both with and without epilepsy—rejected the use of assarε due to its negative connotations and stigmatization. A verb derived from this word translates to “driving the Jinn (spirits) away.”

In response to the study, the  adopted three new terms. Two are in Arabic: lipilipsy (يسبيليبل), a variant of the English term; and brain electrical disorder (غامدلل يئابرهكلا لالتعإلا), a more formal term used in writing. A third is in the Amazigh (Berber) language: agullel, which refers to the loss of concentration and memory sometimes experienced by those with epilepsy. Members of the league appeared on television and taught courses to explain the new terms.

“Many epilepsy associations are using the new terminology,” said Souirti. “Also, I have seen many [graduate and PhD] theses using the new terminology.”

South Korea

In South Korea, epilepsy was called gan-jil—the madness disease. A  paper that analyzed online news articles found that almost 78% of Koreans had negative sentiments toward epilepsy when gan-jil was in use. The language used in the articles also portrayed epilepsy as a burden on society.

“A person with epilepsy was considered to have a very wicked, nasty personality,” said Jun Choi, an associate professor of neuroscience and neurology at the Ajou University School of Medicine in South Korea and an author of the study. “If an acquaintance becomes aware of a person’s epilepsy, the person may be rejected.”

, the Korean Epilepsy Society and Korean Epilepsy Association replaced gan-jil with noi-jeon-jeung, meaning “cerebroelectric disorder.” Public educational programs, lectures, and videos were used to promote the new name.

Since then, the positive perceptions of epilepsy have increased to 55%, according to Choi’s research. The language now used in online articles suggests that people are interested in learning about epilepsy and how to administer seizure first aid. As for gan-jil, it is fading into obscurity.

“During my lecture for graduate students, I sometimes ask, ‘Do you know [the term] gan-jil?’,” said Choi. “I think less than 10% know the term.”

Changing the name

It is difficult to say how much current terminology for epilepsy perpetuates stigma. The terms represent the perceptions of epilepsy at the time of their creation, but advancements in medicine have caused them to lose their original meaning. Shorvon says that these terms are now used out of convenience.

“[The term epilepsy] is useful as a shorthand for people who have seizures,” said Shorvon. “Rather than saying, ‘This is a person who has seizures’, just say, ‘epilepsy.’”

How the term is used can also affect self-perceptions. A  study in the United Kingdom found that almost 87% of people with epilepsy preferred to call themselves as “a person with epilepsy” rather than “an epileptic” or “an epileptic person.” People said that the phrase “person with epilepsy” separated their identity from the condition. But those who preferred the term “epileptic” viewed epilepsy as an essential part of their identity.

“I do not see my epilepsy as being important to my sense of self,” said Dueweke. “It is just a part of me. But…I definitely do not like saying there’s a right or wrong. I used to be rigid and say, ‘You should always say “person with epilepsy”’ but I have come to learn that it is very regional.”

The singular words epilepsy and seizure also are misleading. They imply one condition and one manifestation. The reality is far more complex.

“All epilepsy means is that you have a propensity to have seizures,” said Shorvon. “[But] it is not a single disorder. There are lots of different types of epilepsy or epileptic seizures, and there are lots of different causes.”

Many terms still have negative connotations, and changing them could improve perceptions of epilepsy.

“A name represents the nature, character, and existence of something,” Choi said. “If the name of a disease has a negative implication, we may consider the disease as negative without [thinking].”

The challenge is choosing new terms. Some, like Shorvon, believe that replacing epilepsy with seizure disorder could reduce stigma.

“If you say, ‘I have a seizure disorder,’ no one knows what that is, and they would probably not react,” said Shorvon. “But if you say, ‘I have epilepsy,’ their minds conjure up all sorts of things that are probably inaccurate.”

A better understanding of the term, then, is perhaps just as important as the meaning of the term. If people understood the many types of seizures, why these seizures occur, and that they are often controllable with daily medication, would the terms matter?

Dueweke said that public education about epilepsy and seizure first aid can certainly help to correct misunderstandings about epilepsy and seizures.

“If you can help people say, ‘I am not helpless during another person’s seizure’, they can feel empowered to make a difference,” she said. “And see epilepsy as something that cannot necessarily be controlled, but something that can be understood.”

“We are never going to get rid of seizures,” said Shorvon. But through spreading awareness and dispelling misconceptions, “we might get rid of the social implications of an epilepsy diagnosis.”

Resources:

 (Epilepsia)

 (Seizure)

 (Epilepsia)

(Transcultural Psychiatry)

 (Neurology Asia)

 (Cambridge University Press)

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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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