"Why life with epilepsy doesn't look anything like you'd expect it to."

Image: 16-year-old Abby Croxford (supplied)

About halfway through this year I was diagnosed with epilepsy. It came as a shock. It came as a shock even though I had been showing “symptoms” for five years.

I place quotation marks around symptoms because in my mind, my symptoms didn’t conform to the stereotyped symptoms of epilepsy. Like most people, I assumed that when a person with epilepsy experienced a seizure they would fall to the ground, be incapacitated, and foam at the mouth.  But, that stereotyped vision isn’t the full story.

“I have Tourette syndrome”

When I have a seizure, I experience short-term vagueness and/or intense flickering of the eyes. My eyes can roll back in my head, but I’m not on the floor, convulsing. I was having seizures often, but I never even knew it.

I learned about my seizures because a well-meaning, yet immature acquaintance asked me if I had “eye Tourette’s” (the answer should be self-explanatory). For so long, people avoided mentioning anything to me so I wouldn’t feel embarrassed.

Halfway through this year, I was referred to a neurologist to undertake a series of tests on my brain in relation to my symptoms. I remember sitting in the chair as a technician stuck wires to my head. I asked her why most people undergo these tests. She told me it was for epilepsy. For the first time I noticed a sign on the door promoting a chat room and support space for teenagers who have epilepsy. Not once did it cross my mind that I had it.

After the appropriate tests, my GP was the first person to tell me of my diagnosis and she was very blunt. All she said was, “Abby, the tests show you have epilepsy”. She then proceeded to hand me a box of tissues. My mum placed her arm around me. Before the box of tissues, before my mother’s hug, I wasn’t going to cry.  But I did. I cried solidly in the doctor’s surgery and regularly for the next few days for reasons that I couldn’t quite articulate.

“I live with an invisible illness”

Honestly, I really didn’t have a clue what epilepsy was. The most experience I had with the condition was learning the difference between spelling “elliptic” and “epileptic”. I was crying not because I actually knew what was happening to me, but because I was now a stereotype and I hated that stereotype.

In the five months since my diagnosis, I have noticed the epilepsy stereotype everywhere. I have had people pity me and many people assume that I am incapable of living “normally” post-diagnosis. I have heard the jokes about epileptics. I have come to learn about a dance move called “the seizure” where people “spaz out". Additionally, there’s joke about Julius Caesar, who is theorised to have had epilepsy. The joke is, he should be re-named Julius Seizure. So witty.

Up until now, I have not rebuked these jokes. But in staying silent, I’ve perpetuated the stereotype that epilepsy is somehow an embarrassment.

So, let me say loud and clear right now, having epilepsy isn’t an embarrassment. It’s not a joke. It doesn’t prevent achievement. Importantly, there is not just one version of epilepsy. No one is their illness, and it cannot define someone.

Imagine if we treated physical illness the same way we treat mental illness.

I have learnt that the person I am post-diagnosis is the exact same person I was before - I just get to have a little bit of extra knowledge about myself. I’ve gained an awareness many people don’t get the chance to discover. Now I know the symptoms, I see people with “nervous ticks”, people who are prone to “spacing out”, and I wonder what a neurologist’s tests might reveal.

I’ve found solace in the concept that epilepsy isn’t life changing. It's certainly not life limiting.

If the achievements of Julius Caesar are anything to go by, I have high hopes.

Have you had any experience with epilepsy?