Call for understanding: What it's like to live with epilepsy

It’s 2 pm, on a Wednesday in March. I meet Elizabeth Atieno, 25, in her parent’s homestead in Migori County. Her eyes, distant yet piercing, hold tales of a journey most have never dared to tread. As the soft rays of the sun dance across her face, it unveils the unseen battle she fights daily -- a battle against epilepsy. 

She narrates that she started experiencing the symptoms of this condition when she was three years old. 

“It was very difficult for me to understand what I was going through at that time or even express my feelings to anyone because I was still very young. Whenever it happened, I would run to one of my parents because I thought someone wanted to internally harm me,” Elizabeth recalls. 

Elizabeth, now 24, says that she would sometimes express all these to her siblings but being young as she was, they couldn’t understand what she was telling them. She narrates that they probably thought it was all in her imagination.  

“Sometimes they would even laugh at me. I was rarely with my parents since my mother used to spend most of her time in the rural and my dad was at work. My sisters were also young by then and so they were unable to understand my situation,” Elizabeth says. 

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She continues by saying that, as she grew up, her neighbours began to worry about the frequent seizures and convulsions she would have, mostly when out playing with their children. 

“Some of our neighbours decided to share the issue with my mother. However, my mother did not take it so seriously because she had never seen me having any seizures,” she says. 

“As it was narrated to me, one night, while asleep on a double-decker bed, I had a convulsion and fell from the top decker to the floor. I did not make any sound or even cry but I was stiff, which scared my sisters,” she recalls. 

They called out to her parents in another room. They rushed into the room and were also shocked at what they saw. 

“My dad carried me to the living room and laid me on one of the chairs. I stayed unconscious for around five hours before I woke up. This was evidence to my family that something was actually bothering me. From that moment, my dad told everyone to keep a good eye on me,” Elizabeth says. 

“It took my parents a very long time to understand how to handle the situation because the convulsions were very rare and I was too young to elaborately describe to them how they made me feel,” she adds. 

“My father took me to Aga Khan Hospital in Kisumu after I was referred there by a doctors in our vicinity. On going to the hospital, I was diagnosed with epilepsy and the medics started me on an anti-epileptic drug. I would go back for review every first weekend of every month,” she adds.

According to the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), epilepsy also known as seizure disorder, is a common brain condition that causes repeated seizures and it’s one of the most common conditions that affects the brain.

A study carried out by the National Epilepsy Coordination Committee (NECC), about the epidemiological studies on the prevalence of epilepsy in Kenya shows that about 4 out of 10 people per every 1000 people in a population have epilepsy. In high-income countries, 49 per 10,000 people are diagnosed with this condition annually with low and middle-income countries recording about 139 cases per every 100,000 population.

“My life changed. I started a life of taking drugs every day. I was lucky to have no phobia of drugs or injections. However, these drugs impacted a great change in my life. I ate so much and gained so much weight. I became hot tempered and moody, “she says. 

Through her own research and her doctor’s advice, Elizabeth says she began to understand her condition and the changes in her body.

“I realised that most of these changes were side effects of the drug. This made me see the need to train myself on my temper and moods,” she says.

When Elizabeth was in Class 8, she experienced a very serious convulsion and this forced her parents to rush her to the specialist who was handling her before at Aga Khan Hospital in Kisumu.

“The doctor insisted that I had to be admitted for close observation. I was admitted for one week and somehow this affected me in terms of my academics. Being that I was going to do my KCPE that year, I had to find a way of making up for what I had lost. I scored 369 marks in my KCPE and was privileged to be called to a national school,” Elizabeth narrates.

“In the school I was admitted to, my seizures began to get worse. My school nurse did not know how to handle most of my convulsions and always referred me to the nearby medical centre. Sometimes I would be admitted for a week and this affected my studies. I missed so many lessons,” she adds.

“What always pinned me down the more, was the fact that most of my classmates were never supportive and even preferred to abandon me. When I got seizures, they never had an interest in assisting me academically. Only a few and I thank them,” Elizabeth says.

In Form Three, Elizabeth says, she had a memory impairment because of a new drug her doctor introduced her to. Though she was able to understand what she was taught, she couldn’t recall anything after the lesson. This forced me to go home for two weeks and also stop taking the new drug.

It was a very tough experience in secondary school life as a young girl from Migori County struggling to excel in education and at the same time, trying to manage this strange disorder. However, she finished her secondary school education and proceeded to a higher education level.

“In university, I again had a problem recalling things I had been taught unless I was given a hint or a clue. I also had a problem remembering even the names even of my classmates. I only realised all this when I got my results for my first year,” she says.

“Through an EEG test and a CT scan, the tests confirmed that I had a memory disorder that needed to be handled. I had to put my studies on hold so I could recover first. However, the medications were expensive and my parents were not able to afford them. Right now, I am not yet back to school and the memory disorder is still a problem. I am thinking of changing my course because I would do better with a practical course,” a 24-year-old Elizabeth says.

Despite the setbacks, Elizabeth believes that epilepsy will only pin her down if she allows it to. “You can be epileptic, but that does not mean you don’t have a talent or an ability, or you cannot stand strong in the face of suffering,” she says.

“Medication has been a challenge for me. The drugs I use cost up to Sh6,000 a month and some of them are so difficult to find. Luckily, I have a very supportive family and my dad still handles my medical bills but I desire to relieve him from that when the time comes to stand on my own,” Elizabeth says.

“To all people living with epilepsy, show your capabilities to the maximum and overcome the mockery that people make of you when you have your convulsions. Stand strong and value yourself. I have struggled in so many ways in the course of my life, but I believe that my struggles have made me who I am. They have strengthened me and given me the tough heart that I have right now,” she says. 

“I stand strong in spirit to say that epileptics, in their condition, are still able and capable of making a difference in our society. They are abled differently and just require a platform to showcase their strengths and abilities. When you see an epileptic on seizures, please don’t laugh or run away from them but help them, “she says.

“Most people think that by helping them, they will also have the condition. This is just a myth and should understand epilepsy is a non - communicable disease. However, this condition should not make you pity us. We need more empathy than sympathy, “she adds.

“It is also important for patients suffering from epilepsy to open up and be free with those they live with. Through a patient’s expressions and verbal communications, caregivers find ways of ensuring that they help the patient and take care of the patient to the best they can,” Elizabeth concludes.