National Epilepsy Week: four people, one condition, their untold stories
For the next five days, we will be sharing the experiences of people across Scotland touched by the condition
Last updated 30th May 2024
1 in 97 people in Scotland live with epilepsy – that’s around 1% of the population. But how much do we know about and understand it?
It is National Epilepsy Week and we are shedding a light on the human impact of living with the condition.
John Bruce was diagnosed in his forties, at a point in his life when he thought he was settled.
His symptoms manifest themselves as tonic-clonic seizures where a person will lose consciousness and fall to the ground. They will stiffen and then jerk and their breathing may become irregular.
John lost his job, his home, his car, and his independence. “Epilepsy is a thief,” he says. “Epilepsy will take everything if you let it.”
A lack of understanding
According to experts at charity Epilepsy Scotland, it is one of the most common serious neurological conditions in the world.
Around 58,000 people in Scotland are living with epilepsy, and around 5,000 of them are children.
The challenges of having epilepsy as a child or young person can be compounded by the social isolation.
It hardly bears thinking about but there are incidents happening in our schools where pupils are bullied and even filmed having a seizure. Sadly, these videos can go viral.
Kirstyn is a Youth Development Worker and told us: “For an individual dealing with having epilepsy as a medical condition, and then on top of that they know that people have been talking about them or bullying them or that videos have gone round, it’s very difficult.”
We also spoke with Vicki whose son Charlie is 13 and has reflex epilepsy. This means he is triggered by patterns.
In a recent interview, she told us: “It can be dots, zigzags, lines. When you start looking at what he sees, these patterns are everywhere.
“I am on tenterhooks all the time.”
Nowhere to turn
But there are some depths from which people who have epilepsy struggle to come back.
Phillip is from Newton Mearns and was diagnosed when he was 27.
The first time his dad saw him have a tonic-clonic seizure, he told Phillip he couldn’t cope. The close relationship he had with his father was gone.
Phillip, despite having no control over his symptoms, blames himself for the breakdown in the bond they had and planned to deal with it in a drastic way.
He told us: “There’s a logic that leads to suicide and that’s how I planned to deal with this.”
Katie, lives near Battlefield on the southside of Glasgow and found out she had Focal Epilepsy at the age of 33.
She was at a stage in her life when she had a career, independence and felt settled.
Now, it is not possible for her to have a bath if she is home alone in case she drowns.
She can’t walk along the street without the risk of having a seizure and stepping into traffic.
At her lowest it left her spending most days sitting in the dark wishing for it all to end.
In an emotional interview, she opened up to us saying: “I remember one day David came home and he asked how I was, and I told him ‘I don’t want to exist anymore.’”
Happier times
But for John, Phillip, Katie and Vicki, their stories don’t end here.
John tries not to let it hold him back and says he refuses to let it steal his life telling us: "You just have to deal with it and move on. I still make plans for family dos and holidays."
Phillip is now married to Suzanne, whom he met through meetings at Epilepsy Scotland, and who also has the condition. He says he doesn’t know how much longer he would have been able to go on without her.
Suzanne said: “We were able to care for each other in the worst parts which really made us connect deeply.”
Since her diagnosis, Katie has returned to university gaining a master’s and has found ways to navigate the new world she now lives in.
As for Vicki, she and Charlie aren’t letting it rule their lives: "It doesn't hold him back. He'll never let the epilepsy get in the way of the things he wants to do."
Don’t suffer in silence
If you or anyone you know is affected by epilepsy, there are places you can go to for help, for example your GP.
There are also charities like Epilepsy Scotland.
You can find their details and other helpful information on the subject of epilepsy here.