• Chloe James

My Diagnosis Story

The day that changed my whole life, even when I was determined that it wouldn't!

So, what do I tell people?

I had just listened to the doctor talk to me for 10 minutes about the results of my EEG, how there were abnormalities, how there would now be medication and how I shouldn’t be up any ladders or operating heavy machinery for a while (I vaguely remember making some kind of joke about this ruining my weekend plans!). But then he stopped for my reaction, like I should just know what all that meant. He said, it means you have epilepsy.

But what do I tell people?

Three days earlier

Three days before I got the news, I was an active young person who had just graduated with a university degree and was getting ready to start a graduate diploma in primary teaching- a dream I’d had since I was 5 years old.

I’d walked to the local swimming pool for a workout. It was a hot day. I don’t remember much about what I did there, but what I found out in the days that followed was that after I returned to the changing rooms after my swim (a blessing in itself that I wasn’t in the water!), I’d had a massive tonic clonic seizure. I woke up in the hospital, still in my wet swimsuit, feeling worse than I ever had before. Doctors and nurses kept asking me what happened, and I couldn’t tell them. I had trouble staying awake, as I was also more tired than I could have described. I do remember one nurse asking how long I’d spent in the hot tub at the pools, and telling me off for not monitoring my time there. So many young people spend too long in those things and don’t realise they’ll feel crook afterwards, she told me, shaking her head.

I was admitted to the neurology ward for observation and further tests. I kept flipping between exhaustion and panic.

What the heck was going on?

I remember one nurse in particular coming and introducing herself to me. She told me I wouldn’t remember her, but she had been at the swimming pool, walking past with her kids as I went into my seizure. This was the first, but not the last, lucky break I had during my seizure journey.

I had another seizure event while in hospital, or so they tell me! After having an EEG, and with warnings to stay out of swimming pools and bathtubs and not going for any joy rides in tractors, they sent me home. I returned the next morning for my results.

The New Normal

I left the hospital after receiving the news and didn’t quite know what to do with myself. Being the control freak I am, I was ready to study up on triggers and was determined that it wouldn’t hinder me in any way. I called my mum and told her, then my siblings. They were encouraging, but looking back none of us really knew how big a deal this would be or how much it would impact our lives in the months and years to come.

My life changed that day, even if I was determined that it wouldn’t.

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