Healthy Body

The silent disease: living with epilepsy as a student

Have you ever had to worry about not having any control over your own body? For those who suffer from epilepsy, this fear is a reality.

According to the figures from The Irish Epilepsy Association, about 40,000 people in Ireland suffer from the condition – to add to that, there are an estimated 70 to 80 epilepsy deaths every year. Epilepsy is often referred to as a ‘silent disease’, as it lives in an individual without anyone knowing about the anguish that it causes.

John Keatinge, 21, is a final year Culinary Arts student in DIT who discovered he had epilepsy when he was 15-years-old.

“I was in third year and was worried about doing well about exams and school in general so I wasn’t sleeping properly,” he says. “One day in school I went to the bathroom during class and the next thing I remember is being on the floor surrounded by ambulance men. I had no idea what was happening. They brought me outside to the ambulance where some of my classmates were standing nearby  looking shocked. I thought I fell and hit my head, I didn’t think it was anything else. But my mam told me that another classmate had found me having a seizure on the floor and that I had to stay in the hospital for tests to find out what happened.

“I was there for two weeks until the doctors told me I had epilepsy. When I first heard the diagnosis I wasn’t so much upset, I was too young to realise the future implications.”

A seizure is when activity in the brain is disrupted from its normal flow and the body is subjected to sudden convulsions. The effects of seizures differ from person to person but anyone is susceptible to epilepsy at any age.

It is not the age factor that scares John in relation to his epilepsy: “What scares me the most is the fact that I could have a seizure out of nowhere.

“A few years ago I was walking to the shop with my friend and I just had one right there on the path. People passing had to stop and help. Once again I ended up in hospital, even though the doctors told me there was nothing they could do for: there was no surgical remedy, only medicinal.

“Another time I had one in football training – I smacked my head off the pitch. I had a massive black eye for a week or so.  I told people I fell; it’s easier to say that instead of, ‘Oh I have epilepsy’. Most people understand but others treat you differently, as if you are ‘delicate’ and need to be looked after.”

There are different types of seizures but usually they are divided into two groups: generalised and partial.  Generalised seizures are when the entire brain is affected and the body convulses while the mind loses consciousness. Such seizures are known as tonic-clonic (grand-mal). Partial seizures are when the brain is only half affected and a person may remain conscious for the duration of the seizure. Effects of a seizure include head injuries, loss of bladder control and in some cases, death. Around 50% of epilepsy deaths are caused by sudden unexpected death in epilepsy (SUDEP).

John is a sufferer of Tonic-clonic epilepsy and feels that it the most potent form of the condition, “I don’t have photosensitive epilepsy so flashing lights are not a problem for me, but most people don’t know about grand-mal. This epilepsy is down stress and lack of sleep. I think it’s more dangerous because stress is so common for everyone: how do you avoid stress? 

“Last summer I was finding it hard to sleep and I was terrified I was going to have a seizure. I would be awake at 3 in the morning praying that I would get even a few hours of sleep. I wouldn’t tell many of my friends this but I would cry some of those nights, asking why I had to get epilepsy.  Anytime things get a little hectic I really have to be diligent. That fear of helplessness is always present.”

The other 50% of epileptic deaths are caused by head injuries, drowning and road accidents; signifying how lethal having a seizure at the wrong time can be.

“It’s a bit awkward on nights out with friends, especially from college where the drinking thing is a huge part of socialising,” he says. “I can’t take as much alcohol as others so it can be awkward having to explain the reason to people over and over again. I hate having to tell lectures about my condition if I’m ever late with an assignment because of a seizure but it’s just part of the whole process really.

“I can’t drive because of my condition. I think the inability to drive is one of the most frustrating aspects of my epilepsy. I hate watching my friends driving their cars and I’m stuck getting the bus to college. I need to be seizure free for two years and off my medicine to be even considered by the doctors to be eligible to drive. I don’t see that happening anytime soon.

“Right now I’m so dependent on my anti-seizure medicine. This year I tried to go off the medication because I hadn’t had a seizure in nearly eight months but two weeks later I had a fit in my room and crashed into the door, fracturing my wrist.  I was so upset, I thought I was finally getting a handle on my epilepsy but that was a massive blow.”

Putting the condition into perspective, according to The Irish Epilepsy Association, one out of 20 people will have a seizure at least once in their lives.

John remains positive about his epilepsy despite the setbacks that he has to face, “I’m lucky because my medicine stops the seizures once I watch myself. I know people in worse situations who have seizures on a weekly basis. My condition is manageable: I have a relatively normal life. Obviously I realise the implications for the future; in any job I have I will have to inform people so there will never be any escape, but that is something I just have to deal with. I’ve accepted that I have epilepsy. People can see me for me and not for my disease.”

Follow Emily on Twitter: @EBodkin.