My Epilepsy Journey

5 years into this blog and I don't think I've ever mentioned that I have epilepsy.

I've been seizure-free since 2020. I work full-time, I'm learning to drive, I travel, I graduated from university and generally live a very normal life. Epilepsy is so far removed from my everyday life that I barely think about it anymore.

Maybe that's exactly why it's taken me five years to write this post.

Whether you're an epileptic, know somebody with epilepsy, or have no knowledge about the condition, I encourage you all to stay and have a read.

Before I get into my story, here's the quick version.

Epilepsy is a neurological condition that causes recurring seizures due to sudden bursts of electrical activity in the brain.

Not everyone who has a seizure has epilepsy, but epilepsy is characterised by recurring seizures.

That's all the science lesson you'll be getting from me.

Like a lot of people with epilepsy, I didn't wake up one day and suddenly have a diagnosis. It started long before that.

When I was 15, I started showing symptoms which I just brushed off. It started as small changes. My arm or leg would suddenly have a small jerk or twitch. I would also randomly drop whatever I was holding. Cups, my phone, pens. It was almost like my body would forget what it was doing for a split second before carrying on like nothing had happened.

The weird thing was that because it all happened so quickly, I'd convince myself I'd just been clumsy. Looking back now, it seems so obvious, but at the time I had absolutely no reason to think something neurological was happening.

There is only so long you can ignore symptoms before they become impossible to brush off.

The longer I ignored them, the worse they got.

I would be talking to someone and they'd ask me a question. I'd go to respond, but it was like my brain suddenly hit pause. I knew what I wanted to say, I just couldn't get the words out.

All of a sudden, conversation felt difficult. Which sucked because I love talking!

The world also started feeling... fuzzy. Almost dreamlike. It felt as though I wasn't fully present, but I could never quite explain why. Looking back now, those moments make a lot more sense than they did at the time.

Sadly, epilepsy is a sneaky little thing, and one morning I had my first tonic-clonic (or grand mal) seizure. You know the kind you see in movies and TV shows where the person suddenly falls to the ground and starts convulsing.

I was eventually diagnosed.

Generalised Genetic Epilepsy.

A form of epilepsy that affects both sides of my brain and causes me to become unconscious during a seizure.

It was also concluded that I'd been having absence seizures for what was presumed to be quite some time before my diagnosis.

I was always a big daydreamer, and my family used to joke that I was off in "Sarahland."

Turns out those moments weren't daydreams after all.

Getting a diagnosis didn't magically make everything better.

Finding the right medication took months of trial and error.

Every time I had another seizure, it usually meant something wasn't working.

Increase the dose.

Try something else.

Wait.

Repeat.

For a sixteen-year-old who just wanted her life back, it was exhausting.

I missed out on Year 11 camp, social gatherings, swimming at the beach with friends and more.

I felt completely isolated.

For a while, epilepsy became something I had to think about before almost everything I did.

Could I swim?

Could I stay out late?

What if I had a seizure at school?

What if I had one in public?

Those thoughts became part of everyday life.

My neurologist, who guided me through those early years, once told me that epilepsy is one of the most common neurological conditions, yet still one of the most misunderstood.

At sixteen, I nodded because I trusted her.

At twenty-four, I finally understand what she meant.

Most people know what a seizure looks like because they've seen one in a movie.

Very few people understand what living with epilepsy actually looks like.

Then came 2020.

I think most people remember that year because of COVID.

I remember it because it was one of the worst years of my epilepsy.

I was in my first year of Speech Pathology at university and over the course of about five months I had recurring seizures. I lost count of how many medical certificates I had to submit for missed classes, assignments and exams.

My memory was shocking. I'd forget where I'd put my keys, walk into a room and forget why I'd gone in there, or completely lose my train of thought halfway through a conversation.

It was frustrating because on the outside I looked completely fine, but inside I felt like my own brain was working against me.

The failed assignments piled up, and so did my anxiety. I hated uni and dreaded going.

If you've never had a seizure, it's difficult to explain what one actually feels like.

Because I lose consciousness during mine, I'm usually unable to remember much afterwards.

But there is one seizure I do remember.

Ironically, it happened while I was visiting my sister in hospital. Right place, right time... I guess?

We went for an evening walk when I felt an aura (This is the feeling you get right before a seizure)

I was determined to not have a seizure. I thought I could somehow break out of it if I kept my eyes open, not letting myself go unconscious.

It didn't work.

Instead, it meant I stayed conscious for longer than I ever wanted to.

It was one of the strangest feelings I've ever experienced.

I felt my head slowly turn to the right.

I felt my body collapse beneath me.

I remember my breathing becoming shallow, and all I wanted was one deep breath.

I remember looking up at my mum and my sister as they tried to help me.

I knew exactly what was happening.

I just couldn't stop it.

Eventually, I lost consciousness.

It only lasted a matter of minutes, but it felt never-ending.

One of the biggest misconceptions is that epilepsy only exists during a seizure. For me, that's the smallest part of it. Most days look completely ordinary, but there are days when I'm exhausted for no obvious reason, or my brain just feels slower than usual. Those moments don't look dramatic enough for people to associate them with epilepsy, so they're often invisible.

I get tired

I get brain fog

I often forget things

I get anxious

I lose concentration

Now, I'll be the first to admit that I push the limits with my epilepsy. I stay out late, I drink, and I definitely don't always get as much sleep as I should. None of that means I don't take my epilepsy seriously. It means that after years of appointments, medication changes and learning how my own body works, I've reached a point where epilepsy fits around my life instead of my life revolving around epilepsy.

If there's one thing I hope you take away from this post, it's that epilepsy is so much more than the seizure itself.

It's the uncertainty.

It's the recovery.

It's the invisible moments that nobody else sees.

But it's also resilience.

It's learning your own body's limits, adapting, and eventually finding confidence again.

For years, epilepsy was such a huge part of my life, yet somehow it never made its way onto this blog.

I'm really glad it finally has.

If you have epilepsy, I hope this post reminds you that you're not alone. And if you don't, I hope it helped you understand a little more about what life with epilepsy can really look like.

Sez