“I didn’t tell my friends that I had epilepsy because I was afraid that my friends would treat me differently,” says 21-year-old Huma *. “I’m always very conscious of having seizures in front of them, so I fall into situations that can cause me, such as going to the movies with them or riding a roller coaster. I avoid that, “she adds.
Huma first had a seizure at the age of 11 after getting off the amusement park ride. Initially, her family thought someone had applied her black magic to her, but multiple rounds to her faith healer did not prevent subsequent seizures. A general practitioner in her family referred them to a neurologist. Huma underwent several tests based on the advice of her doctor, and her EEG report identified temporal lobe epilepsy. Her parents then consulted with a psychiatrist about regular medications that could help control her daughter’s condition.
Epilepsy is one of the most common neurological disorders and is estimated to affect 50-60 million people worldwide. Epilepsy, a chronic neurological condition, is characterized by recurrent seizures with or without cloudiness and loss of consciousness. Simply put, epilepsy is best understood as a temporary short circuit in the brain. However, the stigma associated with an epileptic seizure is as common as the occurrence of epilepsy. Therefore, people suffering from this condition do not speak openly about it and usually hide the diagnosis even from close friends.
About 80% of epilepsy patients belong to developing countries, but the treatment rate is surprisingly low. In Pakistan, studies show that 27.5% of epilepsy drugs in urban areas and 1.9% in rural areas are treated with antiepileptic drugs.
The essence of epilepsy has long been distorted by myths, fears, and misconceptions about common neurological disorders, leading to prejudice and discrimination.
The effects of epilepsy are not fully evaluated and understood in our society. This is due to the lack of awareness and outdated beliefs that are prevalent, especially in the subcontinent. Epileptic seizures are often recognized as gin’s belongings or black magic. A significant portion of patients like Huma are taken to the pill for roohani ilaaj (mental healing), not for neurologists or psychiatrists.
There are multiple reasons why our society does not seek proper treatment for epilepsy. Poverty, dyslexia, lack of knowledge about disability, deep-seated superstitions, and lack of government priorities are one of the main factors. In our society, the condition remains undiagnosed or the fear of stigma, which is an obstacle to hiring and seeking marriage for epileptic patients, is kept secret.
The mother of a 25-year-old woman with epilepsy shares that her family had hidden her daughter’s diagnosis from her daughter-in-law because of this fear. Once upon a time, her daughter-in-law’s sister-in-law saw her having seizures during her sleep. The next day she packed her and divorced. These examples highlight the apparent ignorance of this neuropathy and the urgent need to educate the masses about it.
Some false beliefs about epilepsy in our culture are that it has a supernatural cause, it is contagious, it can lead to other illnesses, and epilepsy patients You must not get married.
Zuhair * was not allowed to use a grown-up computer, despite his interests. His parents were told that excessive screen time could cause seizures. This is true in some cases of Photosensitive Epilepsy, but not always. There are even bluish glasses that can be used to reduce photosensitive epilepsy.
Web developer Zuhair, now 28, recalls his condition as follows: In my personal experience, diagnosing triggers and predicting the next timing is very difficult. [seizure] happen. So this condition always keeps you on the cutting edge. “
As for the social perspective, Zuhair confesses that it is very difficult to talk about being epilepsy, as people can be insensitive to his condition. “They don’t really understand it, and they definitely lack awareness of how to deal with those who have had a seizure,” he says.
“People need to understand that if someone has a seizure, there is no way to stop it. The best thing anyone can do is swallow or injure someone who is experiencing this. Do not do it. “
Diagnosis of epilepsy does not mean that the person is invalid. This is a fully manageable condition, and most people with epilepsy are in good health between seizures. In fact, according to the World Health Organization, “if properly diagnosed and treated, an estimated 70% of epilepsy patients may not have seizures.”
People with epilepsy are advised to remain physically and mentally active. “There is nothing in excess” is good advice for most people with epilepsy and requires the necessary precautions to avoid seizures.
Interestingly, epilepsy is one of the oldest documented disorders, and the first reports of epilepsy date back to Assyrian texts dating back to 2,000 BC. Multiple references to epilepsy can be found in the ancient texts of all civilizations — most notably in the ancient Greek medical texts of the Hippocrates collection.
Epilepsy is associated with influential leaders, intellectuals and creatives such as Socrates, Julius Caesar, Elton John and Vincent van Gogh. Writers such as Edgar Allan Poe, Agatha Christie, and Fyodor Dostoevsky are also in this state, and the onset of a seizure may be associated with an explosion of creativity among writers and artists.
Notably, many characters in Dostoevsky’s story had epileptic seizures. In a 2017 column on PBS NewsHour, Dr. Howard Markel said: Dedication and complete life. “
“Everyone’s journey with epilepsy is unique,” says Amir *. 41-year-old Amir has been a successful corporate lawyer. He has a happy marriage and is a father with two children. He was diagnosed with epilepsy when he was five years old. He shares decades, followed by years in which he may have had a few seizures in a six-month period when he did not experience one seizure.
“For me, environmental stressors are important in predicting the frequency of these attacks,” he says. “For example, after losing his mother, he had three seizures the following month.”
Epilepsy does not affect the daily chores of Amir, given that they are taking antiepileptic drugs even in years when they have not had seizures. However, he has confirmed that he has taken safety measures. For example, he never drives and is a gamer, but he avoids playing VR (Virtual Reality) games that have been shown to cause seizures in people who are prone to this condition.
In Pakistan, the first celebrity to be diagnosed with epilepsy was Abdul Satter Eddie, who publicly announced that he had developed epilepsy in 2003. Join a physically and mentally demanding lifestyle like a legendary philanthropist. During his lifetime, Eddie did not allow epilepsy to interfere with his work. He continued to be actively involved in volunteer ambulance networks, orphanages, homeless shelters, rehabilitation centers and cross-Pakistan animal shelters.
De-stigmaization of epilepsy is essential to our society, as this is a relatively common disorder in Pakistan and the affected people usually fall into the age group under 30. There is a strong need to give the general public the perception that epilepsy is a widespread, non-contagious, treatable chronic brain disorder.
The writer is a clinical psychologist and freelance journalist.
She can reach at [email protected]
Published on EOS Dawn on June 12, 2022