“I did not tell my friends I had epilepsy out of fear that they would treat me differently”, says 21-year-old Huma*. “I am always hyperconscious of having a seizure in front of them so I avoid getting into situations which might trigger me, like going to the movies with them or getting on a rollercoaster,” she adds.

Huma first had a seizure when she was 11, after coming off an amusement park ride. Initially, her family thought someone had done black magic on her, but multiple rounds to faith healers did not prevent subsequent seizures from occurring. The family’s general physician referred them to a neurologist. Huma got some tests done on the doctor’s advice, and her electroencephalogram (EEG) report identified temporal lobe epilepsy. Her parents then consulted a psychiatrist for regular medications that helped control their daughter’s condition.

Epilepsy is one of the most common neurological disorders, with 50 to 60 million people estimated to be affected worldwide. A chronic neurological condition, epilepsy is characterised by recurrent seizures, with or without clouding or loss of consciousness. In plain terms, epilepsy can be best understood as a temporary short circuit of the brain. However, the stigma attached to epileptic seizures is just as prevalent as the occurrence of epilepsy. Hence, people afflicted with the condition do not talk about it openly and usually hide their diagnosis even from their closest friends.

About 80 percent of people with epilepsy belong to developing countries, but the treatment ratio is astoundingly low. In Pakistan, according to studies, only 27.5 percent epileptic persons in urban areas and 1.9 percent in rural areas are treated with anti-epileptic drugs.

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

The impact of epilepsy is not fully evaluated and understood in our society. This is because of a lack of awareness and obsolete beliefs especially prevalent in the Subcontinent. Epileptic seizures are often perceived as djinn possessions or black magic. A sizeable portion of patients, like Huma, are taken to pirs for roohani ilaaj (spiritual healing) rather than to a neurologist or a psychiatrist.

There are multiple reasons for the absence of proper treatment-seeking behaviour for epilepsy in our society. Poverty, illiteracy, lack of knowledge about the disorder, deep-rooted superstitions and lack of governmental prioritisation are among the major factors. In our society, either the condition remains undiagnosed or is wrapped in secrecy over the fear of stigma, which would become an obstacle in seeking employment or marriage for an epileptic patient.

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

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

Zuhair* was not allowed to use a computer growing up, despite his interest. His parents were told that excessive screen time can trigger a seizure. While this is true for some cases of photosensitive epilepsy, it is not always the case. There are even blue-tinted glasses available for reducing photosensitive seizures.

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

As far as society’s view is concerned, Zuhair confesses that it is quite difficult for him to talk about being epileptic, since people sometimes are insensitive to his condition. “They don’t really understand it and there is definitely a lack of awareness on how to deal with someone who has a seizure,” he says.

“People need to understand that if someone is having a seizure, there is no way to stop it. The best anyone can do is to make sure the individual experiencing this doesn’t swallow their tongue or injure themselves.”

The diagnosis of epilepsy should not mean that the person is rendered an invalid; this is a completely manageable condition, and most people with epilepsy are in good physical health between seizures. In fact, according to the World Health Organisation, “An estimated 70 percent of people with epilepsy could be seizure-free if properly diagnosed and treated.”

People with epilepsy are advised to keep themselves 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 first reports on epilepsy being traced back to the Assyrian texts dating to 2,000 BCE. Multiple references to epilepsy can be found in the ancient texts of all civilizations — most prominently in the ancient Greek medical texts of the Hippocratic collection.

Epilepsy has been associated with influential leaders, intellectuals and creatives which include Socrates, Julius Caesar, Elton John and Vincent Van Gogh. Writers like Edgar Allan Poe, Agatha Christie and Fyodor Dostoevsky also had this condition and the onset of seizures has on occasion been linked to bursts of creativity amongst 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 he was grateful for his seizure disorder because of the ‘abnormal tension’ the episodes created in his brain, which allowed him to experience ‘unbounded joy and rapture, ecstatic devotion and the completest life.’”

“Everyone’s journey with epilepsy is unique,” says Amir*. Amir, 41, enjoys a successful career as a corporate lawyer. He is happily married and father to two children. When he was five, he was diagnosed with epilepsy. He shares that there have been entire decades when he has not experienced a single seizure followed by a year where he might have had two or three fits in a span of six months.

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

Epilepsy does not affect Amir’s daily chores, granted that he adheres to his anti-epileptic medication even in the years when he has not experienced a seizure. However, he makes sure he takes some safety measures, for example, he never drives and, although he is a gamer, he avoids playing VR (virtual reality) games, which have been shown to trigger seizures in those susceptible to the condition.

In Pakistan, the first famous person to own up to their epilepsy diagnosis was Abdul Sattar Edhi, who publicly announced he had epilepsy in 2003. His announcement was instrumental in motivating people with the condition to realise how they could lead their lives normally but could also partake in a physically and mentally rigorous lifestyle such as the legendary philanthropist. During his lifetime, Edhi did not let epilepsy hamper his work. He continued to be actively involved in his volunteer ambulance network, as well as the orphanages, shelters for the homeless, rehabilitation centres and animal shelters he ran across Pakistan.

Since it is a relatively common disorder in Pakistan, with those being affected usually falling in the under-30 age bracket, destigmatising epilepsy is imperative to our society. There is a strong need to create awareness in the general public about epilepsy as a widespread, non-communicable, and treatable chronic brain disorder.

The writer is a clinical associate psychologist and freelance journalist.

She can be reached at rabeea.saleem21@gmail.com

Published in Dawn, EOS, June 12th, 2022