Living with seizures: ‘It’s lonely, people just don’t understand’

She sits on her bed calmly with her legs crossed beneath her and a glass of water poised in her hand. As somebody who did not know her health issues, you would think she was just a normal 19-year-old girl.

But then she seizes.

This girl, who only moments ago was laughing uncontrollably, was now shaking violently with her eyes rolling to the back of her head and her body limp.

“I am sorry”, she said to me as she gained control in a voice which felt inhumane – foreign and fragile.

In the UK, 103,600 people live with epilepsy – a disease which results in seizures as brain activity becomes uncontrollable. And yet, people like Cerys Howells feels as though people still fail to understand the severity of her health.

“I always feel as though I don’t look ‘disabled enough’. Last week, I went to a social event and when I asked security for help to support my condition, they questioned the validity of my health passport, even taking it away from me at one stage.”

“It’s lonely. People just do not understand. I don’t want people’s pity, I just want to be supported and to feel like me.”

Cerys Howells’ seizures are medically unexplained, as it has been confirmed she does not have epilepsy, however, she continues to push for answers.

“[I feel as though] my health [has] been overlooked by doctors and nurses,” she said.

“I had a car crash in April 2023 and since have been dismissed by many health professionals. I feel like my seizures were caused from this, as I did take a massive knock to my head and was unconscious for about five minutes.

“The paramedics at the scene sent me home, it was my mum who took me to A&E, but they did not look for possible head injuries.”

“I am now pushing my GP surgery for a CT scan, and hopefully then I can get some answers about these random but scary seizures,” she said.

Following our talks with Miss Howells, WINOL conducted a survey which found that 15.4% of students would not know how to react if they saw somebody having a seizure, while 30.8% of students were not sure.

“Seeing somebody [having a seizure] can be a very stressful thing” said Nikhil Shah from the Epilepsy Society.

“It is important that we remember the three words: calm, cushion call – stay calm, cushion their head and call an ambulance.

“Staying calm is important for [the seizer], but also the person supporting them. We cushion their head to prevent them from harming themselves while they are shaking. You can use a jumper or jacket, something like that.”

Understanding how to react to somebody having a seizure is important. It prevents injuries to the seizer and damage, but most importantly, it can potentially save a life like Cerys.