READER REPORT:

'You wouldn't know my brain was misfiring'

NAME WITHHELD
Last updated 07:30 05/08/2014
stress headache pain

RESETTING: After a seizure the day can be written off with headaches and disorientation.

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I'm one of the 30 per cent of people with epilepsy who will never get full seizure control, no matter how many pills 
I swallow every day. It's just how it is.

Epilepsy is such an individual condition, no two of us have the same story so I can't speak for anyone else, but I know others reading this will identify with a lot of what I'm saying.

Epilepsy is, most of the time, an invisible condition. Unless we're having a seizure and someone else is there to witness it then, you wouldn't have a clue there was anything wrong.

The person I'm sitting next to on the bus might also have it for all I know. Given that approximately 1 in 100 people will be diagnosed with epilepsy at some stage, statistically there's a good chance they do.

I've had tonic clonic (formerly called grand mal) seizures since my teens, for 30 years now. They're the type that most people think of when they hear the word epilepsy- I fall over and convulse.

Despite having full-on convulsions, my epilepsy is very invisible. I've never had seizures during the day, due to having a certain seizure syndrome which means I've only ever had them within 15 minutes of getting up in the morning, and for the last 12 years only when I'm asleep.

Because of that, and living alone, it's been 10 years since anyone has seen me have a seizure.

My current crop of doctors and friends have never seen me have a tonic clonic seizure, but they've had plenty of encounters with the aftermath.

This is actually the worst part of it for me. Tonic clonics don't just stop and then you get up and carry on. Most of us are out of action for the better part of a day, sometimes longer.

Nocturnal seizures offer the advantage of sleeping through the immediate semi-conscious state (which can be very dangerous living alone), but come morning I'm still having to deal with a massive headache, off-balance, bitten tounge, severe pain from the muscle spasms, rapid cycling mood swings, disorientation/confusion, nausea, vomiting, then trying to remember to take my morning meds.

Most days it'll be back to bed and the day's a total write-off.

I will lose a day minimum every time, and depending on the seizure severity it can take up to a week for my brain cells to reset and my cognitive functioning is back to normal.

It can get very difficult there, people who know me can put the moodswings and cognitive difficulties into context.

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People who don't know me obviously can't and end up on the receiving end of a crazy woman who doesn't know how to work an eftpos machine or answer a simple question and bursts into tears at the checkout.

They don't know my brain is misfiring and how can I tell them? Do I tell them? Sometimes I say I've got concussion, a lot of people seem to understand that.

I'm also seriously drugged up to the eyeballs. I don't look or feel drugged up (except for some annoying side effects) but it was really obvious back in the days when I was still able to work part time, when I was up against non-drugged people.

I can't work anymore as my seizures have got worse in recent years. But I still look perfectly ok and when I'm having some good days I'd like to be using my degree and not be stuck on Invalids Benefit.

It's awful being in social situations where I'm asked where I work. Or in situations where ID is unexpectedly required and I'm asked for my drivers licence automatically. People get really put out when I say I don't have one.

I've requested that my story be published anonymously, not because I'm ashamed of having epilepsy at all, but because I'm worried about the potential consequences for me.

That's because sadly, the stigma and discrimination attached to epilepsy is still way up there, on a par with mental illness.

It's one of the words you never mention on employment applications or in interviews because that's as far as you'll get. If you can hide it, you have to, which we shouldn't have to do.

The majority of people I know who have fully controlled epilepsy never mention it to employers. It's something I've made sure no landlord has ever known about.

Discrimination is very much alive and kicking out there, and I can assure you that the Disability Discrimnation Act is beyond a joke.

Invisible illnesses are complicated enough. It's not a great situation when we feel we have to lie about it as 
well.

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