10 things Non Epileptic Seizures Taught Me

Sarah Jacobs

Non Epileptic Seizures look similar to epileptic seizures, however they aren't caused by abnormal electrical discharges or blood pressure. They can last for hours and cannot be medicated. I was diagnosed at 15 after having had a seizure in class. Here are some things I have learnt since then.

Nobody knows what it is

'You mean epilepsy?' No Sharon, if I meant epilepsy I would have said so. Despite one in four patients who go to an epilepsy clinic actually having NES, no one seems to have heard of it

Doctor's haven't heard of it either

When a doctor googles your condition in front of you, you know you're a tad uncommon. This can lead to any doctor's appointment leading to a Ted Talk on what is actually wrong with me.

Whether to tick the disabled box

A more difficult question than it should be really. Your condition isn't on any of the forms, you can't get advice from a specialist and Google is telling you 10 different things. Even after calling yourself disabled you'll have moments of imposter syndrome keeping you up till 3am. But hey - at least you get a sunflower lanyard.

Some people suck

Ever had someone try and induce a traumatic medical incident to get out of an exam? Because I have! High schoolers seemed to think setting of a seizure was all fun and games, at least until the ambulance showed up. A lot of people are absolutely amazing, but there are always going to be a few who aren't. Eventually you learn how to deal with the nasty ones.

Your social life takes a dip

Suddenly you find out how much of your social life relied on bright lights, crowds, loud noises or dangling from large heights. When you have to complete a risk assessment for every activity spontaneity goes out of the window.

Your organisational skills improve dramatically

When nothing can be taken for granted you become the expert planner. Any deadline needs space for a three hour seizure followed by two hours recovery and a chocolate milkshake before you start working again. That essay due in a month? You may only have one productive week out of that time so get started.

The value of friendship

The first time my friend looked up a movie to check if it used flashing lights I almost cried. Little things like that which take some of the pressure off when planning make all the difference in the world.

How many movies use flashing lights

Seriously - stop it.

I want to be able to see Incredibles 2 without going to the hospital.

Academia is harder as a disabled person

When I went for an interview at a prestigious college, I was told I wouldn't succeed there because of my attendance (never mind that my grades were higher than I needed for that course). When my support plan wasn't followed so I became ill, I was told to drop out of school. Despite this, I was always being interviewed for promotional material to talk about my 'struggle'. Maybe I wouldn't have struggled if I'd had support...

You're tougher than you think

Every time a new situation or challenge came up I thought about giving up. However with most things, even though it took more time and effort than it did for other people, I still found a way to get through it. Sometimes preparation, a good support system and pig-headed stubbornness are enough to get through even the most difficult challenges.