Epilepsy sufferer Michelle Peake (33): 'I definitely fear my next seizure and how people will react - usually it's complete panic'
It starts as it always does, with the rising feeling – a strange sensation coming up through the toes, crawling up the body. But the seizure is never the worst bit says Michelle Peake. That comes when she looks up afterwards and sees the panic edged into people's faces.
“I hate when people have that reaction, when they fuss or start calling ambulances," she says.
"In most cases a seizure isn’t an emergency – it’s just something that needs to pass. The less people freak out, the better I feel about it all.”
Michelle is one of the 40,000 Irish people currently diagnoses with some form of epilepsy - a set of chronic neurological disorders often characterised by seizures.
Today marks the first International Epilepsy Day and such is its prevalence that more than €15 billion is spent annually on its treatment in Europe.
And while health and science progressions may continue apace, public understanding of epilepsy remains at a curious standstill.
“How people react to them is often more troubling than seizures themselves,” Michelle says.
“Until recently, very few people knew I had epilepsy. I’ve done all the normal things in life we’re suppose to do - I went to college, I went traveling, I got married.
“And yet there was, and still is, definitely a fear of when the next possible seizure will happen and how people will react – as usually its generally just complete panic.”
Having lived most of her life with the condition, the 33-year-old wants to share her experiences to encourage everyone – whether they have epilepsy or not – to speak openly about it to remove the stigma and fear attached to it.
"I want people to take a second and think what it must be like to not be in control. What it must feel like to live with a condition that could strike at any moment."
A major issue, Michelle says, is that people do not realise how varied epilepsy can be. There are 40 different kinds of seizures and everybody has a different experience.
“For me they began when I was eight-years-old and would start with what my sister Orla would call ‘my legs are flying again’. My body would lose control and shake all over. It didn't hurt and I never lost consciousness so I didn't really understand what was happening.”
“I started to have seizures in my sleep and that’s when my parents witnessed them and I was shortly diagnosed with nocturnal epilepsy.”
For over 20 years Michelle only had nocturnal seizures so figured that she could go about her everyday life as normal.
"I can do this, I thought - I can go to school, college, work and even drive and no one will know.”
“But it didn’t quite work out like that. Where I went wrong was putting my epilepsy in a box – one I didn’t want to look into or tell anyone what was in there.”
“I met my husband while in college and we actually broke up because I would keep making excuses not to stay over at his place because I didn't want him to potentially see me having a seizure.”
“So I broke up with him rather than face up to this big elephant in my life. Eventually I did tell him and we are now happily married and he is very understanding and got me to where I am today with finally facing epilepsy and not letting it define me or be that box that I couldn't open.”
“I wish I had an inspirational story on how I achieved so much while having epilepsy and how it changed me for the better but I don’t. Like everyone else I’ve good days and I’ve dark days.”
“Still in 2013 I made the decision that I needed to face my fears so I started talking to people, shared how I was feeling with my family and friends, and I went to see my neurologist - who knew I’d been avoiding him - and we work on a medication regime that was right for me and not one that was just getting me by.”
“I let epilepsy out of that box and now it’s wide open and I am now dealing with it.”
For information about epilepsy and to get advice on the condition visit Epilepsy Ireland at www.epilepsy.ie.