“I didn’t tell my friends I had epilepsy for fear they would treat me differently,” says Huma*, 21. “I’m always hyper-aware of having a meltdown ahead of them, so I avoid getting into situations that might trigger me, like going to the movies with them or riding a roller coaster,” she adds.

Huma first had a seizure when she was 11 years old, after getting off a ride at an amusement park. Initially, her family thought someone had done black magic on her, but several rounds with religious healers didn’t stop the later outbursts from occurring. The family’s GP referred them to a neurologist. Huma underwent tests on the doctor’s advice and his electroencephalogram (EEG) report identified temporal lobe epilepsy. Her parents then consulted a psychiatrist for regular medication which helped control their daughter’s condition.

Epilepsy is one of the most common neurological disorders, with an estimated 50-60 million people affected worldwide. A chronic neurological condition, epilepsy is characterized by recurrent seizures, with or without opacification or loss of consciousness. Simply put, epilepsy can best be understood as a temporary short circuit in the brain. However, the stigma attached to epileptic seizures is just as widespread as the occurrence of epilepsy. Therefore, people with the disease do not talk about it openly and usually hide their diagnosis even from their closest friends.

About 80% of people with epilepsy are from developing countries, but the treatment rate is surprisingly low. In Pakistan, according to studies, only 27.5% of people with epilepsy in urban areas and 1.9% in rural areas are treated with antiepileptic drugs.

The true nature of epilepsy has long been distorted by myths, fear and misconceptions about the common neurological disorder, leading to stigma and discrimination

The impact of epilepsy is not fully appreciated and understood in our society. This is due to a lack of awareness and outdated beliefs, particularly prevalent in the subcontinent. Epileptic seizures are often perceived as possessions of jinn or black magic. A significant portion of patients, like Huma, are taken to pirs for roohani ilaaj (spiritual healing) rather than to a neurologist or psychiatrist.

There are multiple reasons for the lack of appropriate treatment-seeking behavior for epilepsy in our society. Poverty, illiteracy, lack of knowledge about the disorder, deep-rooted superstitions, and lack of government prioritization are among the main factors. In our society, the disease either remains undiagnosed or is shrouded in secrecy for fear of stigmatization, which would become an obstacle to finding employment or marriage for an epileptic patient.

The mother of a 25-year-old woman with epilepsy says the family hid her daughter’s diagnosis from her daughter’s in-laws because of this very fear. Once, her daughter’s sister-in-law saw her having a fit in her sleep. The very next day she was sent packing and now she is divorced. Cases like these highlight the gross ignorance regarding this neurological disorder and the urgent need to educate the masses about it.

Some mistaken beliefs about epilepsy in our culture are that it has supernatural causes, that it is contagious, that it could lead to other illnesses, and that epileptic patients should not marry.

Zuhair* was not allowed to use a computer growing up, despite his interest. Her parents were told that too much screen time could trigger a seizure. Although this is true for some cases of photosensitive epilepsy, it is not always the case. There are even blue tinted lenses to reduce photosensitive seizures.

Zuhair, now 28 and a web developer, reflects on his condition: “My experience with epilepsy is a little weird because I don’t have seizures often, only once or twice a year. My personal experience has been that it is quite difficult to diagnose the trigger or predict when the next [seizure] what will happen. So this condition constantly keeps you on edge.

From society’s point of view, Zuhair admits that it is quite difficult for her to talk about epilepsy, because people are sometimes insensitive to her condition. “They don’t really understand it and there’s definitely a lack of awareness about how to deal with someone having a seizure,” he says.

“People need to understand that if someone is having a seizure, there’s no way to stop it. The best that can be done is to make sure that the victim does not swallow their tongue or injure themselves.

The diagnosis of epilepsy should not mean that the person becomes disabled; it is a completely manageable condition, and most people with epilepsy are physically healthy between seizures. In fact, according to the World Health Organization, “about 70% of people with epilepsy may be seizure-free if properly diagnosed and treated.”

People with epilepsy are advised to stay physically and mentally active. “Nothing in excess” is good advice for most people with epilepsy, and necessary precautions to avoid seizures should be taken.

Interestingly, epilepsy is one of the oldest documented disorders, with the earliest reports of epilepsy dating back to Assyrian texts dating back to 2000 BCE. Multiple references to epilepsy can be found in ancient texts from all civilizations – primarily in the ancient Greek medical texts in the Hippocratic Collection.

Epilepsy has been associated with influential leaders, intellectuals, and creatives, including Socrates, Julius Caesar, Elton John, and Vincent Van Gogh. Writers like Edgar Allan Poe, Agatha Christie, and Fyodor Dostoyevsky also suffered from this condition, and the onset of seizures has sometimes been linked to outbursts of creativity in writers and artists.

Famously, many characters in Dostoevsky’s stories had epileptic seizures. Dr. Howard Markel in his 2017 column for the PBS NewsHour writes, “The author wrote that he was grateful for his seizure disorder because of the ‘abnormal tension’ the episodes created in his brain, which made him made it possible to feel “unlimited, ecstatic joy and rapture”. devotion and the fullest life.

“Everyone’s journey with epilepsy is unique,” ​​says Amir*. Amir, 41, leads a brilliant career as a corporate lawyer. He is married and the father of two children. When he was five years old, he was diagnosed with epilepsy. He shares that there were entire decades where he didn’t have a single seizure followed by a year where he could have had two or three seizures in the span of six months.

“For me, environmental stressors are important in predicting the frequency of these seizures,” he says. “For example, after losing my mother, I had three seizures in the following months.”

Epilepsy does not affect Amir’s daily tasks, as he adheres to his anti-epileptic medication even in his seizure-free years. However, he makes sure to take certain safety measures, for example, he never drives and, despite being a gamer, he avoids playing VR (virtual reality) games, which have been shown to they trigger seizures in people susceptible to the disease.

In Pakistan, the first famous person to acknowledge his diagnosis of epilepsy was Abdul Sattar Edhi, who publicly announced that he had epilepsy in 2003. His announcement helped motivate people with the condition to realize how they could lead their normal lives but also participate in a physically and mentally rigorous lifestyle like the legendary philanthropist. Throughout his life, Edhi did not let epilepsy get in the way of his work. He continued to be actively involved in his volunteer ambulance network, as well as the orphanages, homeless shelters, rehabilitation centers and animal shelters he ran across Pakistan.

As it is a relatively common disorder in Pakistan, with those affected generally falling under the age bracket of under 30, destigmatization of epilepsy is imperative for our society. Raising awareness of epilepsy as a widespread, non-communicable, and treatable chronic brain disorder is imperative.

The author is an associate clinical psychologist and freelance journalist.

She can be contacted at [email protected]

Posted in Dawn, EOS, June 12, 2022

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