UAE patients speak out about coping with the stigma of epilepsy

The National highlights a few cases where epileptic patients seek to live a normal life in spite of the stigma that comes with the disease.

Maha Ibrahim Al Zaabi saw a doctor after suffering seizures while driving and has not had a repeat attack since starting medication. Razan Alzayani / The National

When Mariam started fainting at the age of 12 her parents did not take her to a doctor. She was taken instead to a mosque near their home in Ajman, where a religious scholar read the Quran over her.
It was not until three years later after she suffered a severe seizure in class that her school advised her parents to seek medical help.
"I just remember sitting at my desk in maths class and suddenly dropping to the floor," Mariam, a Palestinian, said. "When I woke up, everyone around me was horrified, it was like no one wanted to come close to me.
"The nurse called my parents and told them it could be epilepsy and that I should see a doctor immediately."
Her parents did not take well to the news at first.
"They heard the word saraa [Arabic for epilepsy] and freaked out, they thought they had lost their daughter," she said.
"My mum was crying for days and they wanted to take me to a [cleric] again, but this time I insisted we go to the doctor."
Mariam's seizures ended soon after doctors prescribed her medicine to control her epilepsy. Now 22, she wishes they had sought medical help from the beginning.
"That's my message to the family of every epileptic patient out there," she said. "It's not that I don't believe religion can help, of course it can. But spirituality and medicine are two different things.
"Spirituality can help heal your emotions and give you strength as a person, but you need medicine to handle what's physically wrong with you. The first can help you find the inner strength to go through the other."
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Doctors diagnosed epilepsy in Aiysha Nasser when she was 13. She said that growing up in Abu Dhabi while suffering from the condition was often a struggle.
"I'd have lots of friends one day then I'd have a seizure and people would be like, 'let's stay away from her'," she said. "I got the nickname 'Mad Hatter' at school. Kids can be quite cruel in what they say anyway.
"It was a hard time but I had support from my parents and sports to keep me busy."
Mrs Nasser continues to face the stigma as an adult.
"At work they think twice before putting you on a project. With friendships they sort of see you as this ticking time bomb," she said. "But empowering yourself and others with knowledge can help. For example, just giving others basic information of what to do and what not to do if there's a seizure helps put their mind at ease."
One key thing lacking in the UAE are support groups for people with epilepsy, said Mrs Nasser, a newly-wed who plans to start a family. She has been trying to find other women to relate to.
Half Bahraini and half British, she said the Arab side of her family had struggled with her condition at first, but this soon changed.
"There was the whole worry of, 'she's never going to get married and she's never going to have kids'," she said.
"But as I grew up it became more acceptable ... she did go to college, she does have a good job, she is married and now she's planning on having children. She can and will live a normal life."
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Maha Ibrahim Al Zaabi, from Ras Al Khaimah, never lets her epilepsy bring her down.
The optimistic Emirati was told she had epilepsy last year after experiencing three seizures, two of them while she was on the road.
"People always tell me, 'God must love you'," she said. "I would lose consciousness and the car would sway from left to right, but every time there were no cars in the lanes beside me."
Ms Al Zaabi has not had a seizure since she began taking medication last year. She said she stayed optimistic thanks to her religious faith, the support of her loved ones and the constant care of her doctor.
"The secret behind healing from any sickness is one's psychological well-being," she said. "The support from the people around you that can help you find that strength."
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