Belper girl’s isolating struggle with Epilepsy

Emily Donoghue has lived with the condition for half her young life, and says she has been through hell to reach the kind of normality she now enjoys.

Alarmingly, she didn’t even know she had it until she was diagnosed aged 12.

“Before that I just had a reputation as a bit of a day-dreamer,” she said. “My dad used to laugh at me when we were having a conversation and I would phase out. He thought I was off into my own little world.”

The first time she worried about it was in class – a police officer was giving a talk on road safety and she put up her hand to ask a question. As soon as she started speaking her face just fell blank and the room went stone silent.

“Everyone started laughing at me, they thought I was being silly.”

But really Emily was having Petit Mal seizures – less serious absences which pass in a matter of seconds. They generally affect younger people and children, who typically grow out of them.

Emily’s condition gradually worsened. At 14 she started having more dramatic Complex Partial seizures, which “take you out of yourself” without losing full consciousness. Eyes rolled back, clammy hands – you wake up disorientated in unfamiliar surroundings. Two years later she had her first Grand Mal seizure – the serious fit that we most commonly associate with epilepsy – manifesting in a total loss of consciousness, falling and full body convulsions.

Emily, who still lives in Belper, had Grand Mal seizures every day but it has now been two months since her last one.

Yet the 20-year-old says the suspense only makes it worse – as time goes on, she feels like another one must be just round the next corner.

“You start to wonder, ‘when’s the next one’. You’re always waiting for it so I’m constantly anxious,” Emily said.

And it was during her GCSEs that she started getting very depressed.

“I was under pressure with exams, and I had already fallen so far behind because I was missing so much schoolwork. I could have 15 small seizures in the course of a single lesson.” By the time she was 16 Emily was so petrified of having a seizure in public she started to skip lessons.

“With regular partial seizures I was having panic attacks and having to leave the room. I just didn’t want anyone to see it happen, so I just stopped going in to avoid humiliation.”

More recently she has had other trouble - she’s had a few knock-backs tryign to find work and that can take it’s toll. And the condition can take away many parts of your life - Emily isn’t allowed to drive and she can’t go horse riding anymore.

But she’s not alone – for a third of epilepsy sufferers, losing the confidence to leave the house, and watching your life change around you, can mean a downward spiral into depression and other forms of mental illness.

The national charity, Epilepsy Action, says that a sense of isolation and a lack of understanding can be a problem for many people with active epilepsy.

“One in every three people with epilepsy will experience some form of depression in their lifetime,” said campaigns manager Stacey Rennard.

“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.

For Emily, feeling isolated even came on top of side effects from her medication which took away her appetite. She was low, but when she was finally able to reach out through her Facebook page, Epilepsy Stories - Purple Together, she has been able to share experience and make lifelong friends.

One such friend is Whiskey Lynn, 36, from Indianapolis in the US.

A mum-of-two, Whiskey also has daily attacks and as her condition worsened she too became deeply isolated.

She said: “I had all these restrictions on my life like I wasn’t allowed to cook and take my kids to school, and worse, I lost friends and family who said I was faking or they couldn’t handle it – some actually believe this is contagious or saw it as a cause for their day to be messed up.”

So finding Emily’s Facebook page was a God-send, she said.

“To me it’s very important, I feel as if we can reach out to others, share stories, meet others who share the same, whether it be someone living with it, a care giver or a friend. I feel less isolated and most importantly more connected, and it’s a great feeling to help someone.”

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.

Emily is much better now - she may have had trouble finding work before but that won’t stop her, so now she is starting a business of her own to pursue her passion - photography.

“But I wouldn’t have the confidence without Whiskey and my other friends,” she said.

Emily encourages anyone struggling to live with Epilepsy to reach out.

“It could be the thing that saves you,” she added.