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Dublin: 10 °C Friday 27 May, 2016

‘I’m comfortable with my epilepsy. What is difficult are the assumptions around being a non-drinker’

I enjoyed partying and drinking with friends but then I was diagnosed with epilepsy.

Niamh Hegarty

AT 15 WHILE studying for my Junior Cert, I was often plagued with sleepless nights due to a restless and frightening feeling I would get.

It was like night terrors but worse. The only way I could describe it is; it was almost like a jolt, an electric shock that I couldn’t stop or control.

During the time I didn’t know what to think, it was diagnosed as exam stress and that’s what I put it down to. However, these were my first symptoms of seizures or more accurately auras. Five years later, after a late night of partying and drinking with my friends on New Year’s Day I had my first grand mal seizure in front of my family.

After being rushed to hospital and a meeting with a neurologist, I was diagnosed with Juvenile Myoclonic Epilepsy.

Probably the mildest kind and for anyone else who has it, my story might be similar to theirs.

I was advised at the time that I would need to take medication or else the same thing would happen again and that drinking can cause a seizure. The effects of a hangover leaves your body really dehydrated and this would be one of my triggers. As a 20-year-old, UCC student who enjoyed partying, you can imagine what I did with this advice.

I didn’t take it on board.

For the next few years, I continued to go the way I was going. Mostly off medication and amazingly enough, I was incident free for the most part.

A Turning Point

Three years ago that all changed when I had a seizure in a public place, I was alone at the time and ended up injuring myself. The week before that I had also had one on front of a close friend of mine after a night out in Belfast. Although he handled the situation amazingly, it was obvious he was upset.

It was a horrendous week and a turning point. I made the decision then that I would never have a grand mal again or at least do everything in my power to avoid it. The two pieces advice given to me were take my medication and avoid alcohol. So I did.

Three years later and I’m thrilled to say, I’ve been incident free.

However, there’s a catch. Being a non drinker in Ireland has its consequences. Particularly when it comes to meeting new people and especially on first dates. A question a simple as, ‘What are you drinking?’ can lead to a more complex answer than I’m ready to give.

In the past I’ve done everything to avoid the topic. I’ve told people things like I’m off the drink because I’m on a detox, or saving for a holiday or went on a mad one the night before. My sister pointed out that all my little anecdotes are more alienating than anything, and I should just tell the truth.

People are usually very understanding when I tell them I have epilepsy, although it’s a bit of a heavy topic for getting to know you stuff. I have been subjected to some bizarre questions about it, with one person asking me if I ever had a seizure during sex. Needless to say, I never met that guy again.

Being grateful for my health 

Ultimately, I’m comfortable with having epilepsy, it’s part of who I am and I’m grateful for my health. What can be difficult is the assumptions around being a non drinker.

People have admitted to me that they thought I’d be no craic as I wasn’t drinking but glad that I was.

There’s no point in saying otherwise; there is a big sense of camaraderie that goes hand in hand with being drinking buddies. I’ve essentially had to opt out of this and I don’t regret my decision, but it sometimes feels like an unfortunate barrier. I’ve travelled a lot and it seems drink culture isn’t so prevalent in other countries.

I found being a non drinker a lot easier in the states for example. To be fair, I feel we are getting there but realistically being a non drinker should be on a par with being a non smoker; something that doesn’t affect our perception of someone.

There are more positives than struggles to this little anecdote. Overall, putting your health first is primary,as you’re nothing without it and in respecting that much you learn to respect others more. What I’ve learned from the past three years of sobriety is that really being able to have a few drinks with everyone makes no difference to my enjoyment of a night out. I’m enjoying gigs as much as I ever did and chatting to people on nights out as much as ever.

The major, pressing thing is the often awkward answer to age old question of “What are you drinking”. Perhaps this is something I need to get better at.

Niamh Hegarty is a musician and writer, contributing to BBC’s Across the Line among others. Follow her on Twitter.

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