FEATURE: Isolation can be the worst enemy for epilepsy sufferers

Dave Mee
Dave Mee

Epilepsy affects different people in different ways. For many of the 600,000 people in the country it can be debilitating - causing constant seizures and making life miserable.

We are all familiar with the convulsive seizures associated with the condition - they strike at any time and can be life threatening. But for others, epilepsy is an invisible affliction that they live with daily.

Dave Mee lives with the condition. The 23-year-old works with Eastwood Town Football Club, doing press and writing match reports.

He’s big on football, but he doesn’t play much anymore.

His seizures are well under control - he hasn’t had one for over a year now, and when he does have them it can be as easy as focusing.

“I was having partial seizures a few months ago. I can feel them in my mind, but if I put my mind on something else I can make it pass in a few seconds.

“I know when their coming, and just by concentrating on something else I can control them.”

A major issue, Dave says, as that people don’t realise how varied epilepsy can be. There are 40 different kinds of seizures ranging from short absence seizures to the Grand Mal seizures we have seen on TV.

“Everybody has a different experience. For me it’s usually my hands shake. I lose control of them and I can drop things. It can be pretty embarrassing.

“I’ve had a seizure while serving a customer once - they were dumfounded when I was behind the meat and fish counter and I had a seizure where I just couldn’t move for a minute and a half.

“My customer must have thought she’d said something horrible because I was totally motionless.

“I dread that kind of thing happening again.

“But I’ve been lucky,” he continues. “I know other people who have it much worse.”

Epilepsy can be debilitating - the threat of regular and serious seizures puts people at risk of serious harm from falling, losing control of the car and other accidents, as well as starving the brain of oxygen during a long seizure.

Staying away from danger, and the dread of another attack, can lead to a great deal of isolation and depression.

The national charity, Epilepsy Action, says one in three people with epilepsy will experience depression at some point in their lives.

Campaigns manager Stacey Rennard adds: “The links between epilepsy and depression are complicated.

“Many studies show that depression is more common in people with epilepsy than without, and having depression can be a risk for developing the condition.”

When you have epilepsy, any number of things can cause depression from continual seizures to the fear of a seizure, side effects from treatment, problems at work, problems with friends – and for some, depression can be linked directly to the seizure itself.

“Some people with epilepsy also experience a sudden worsening of their mood as the first part of their seizures, during their ‘aura’,” says Ms Rennard.

“This is more common in people with temporal lobe epilepsies and when depression happens after a seizure, it might not start for several hours or it could be delayed for up to seven days afterwards.”

Isolation could be the worst enemy of a person living with epilepsy – particularly as many of the medications available are linked to depression, anxiety, rage and even suicidal thoughts.

Dave knows what this feels like - his condition has meant he hasn’t been able to drive for the past four years.

“I need to get to the football club from where I live in Ripley, and not being able to drive has made me a lot less independent.”

But that could all be changing, he adds.

“I’m starting lessons in a few weeks.”

His condition is less serious so there is still so much he can do, but Dave hopes others will spare a thought for how isolating it can be to live with the life-long condition.