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Living Beyond the Label: My Journey with Epilepsy

Why share this now?

Age brings perspective. I find myself caring less about the small things and more about what truly matters, like helping someone out there feel a little less alone.

I’ve also come to realise how often we’re defined by labels. “Epileptic.” “Diabetic.” “Something else.” But we’re not labels. We’re people, each with our own stories, strengths, and quirks.

Many people live with epilepsy quietly, choosing not to share it. So perhaps the simplest message is this: be kind. You never know what someone might be managing behind the scenes.

Dear reader, I know your time is valuable, so I’ll keep this simple. There are three key messages throughout this piece that I hope stay with you.

The beginning

My first seizure happened at college. I passed out over a hot solid-top stove while cooking.

After a series of tests, my parents received the news that I had epilepsy. I still remember the moment, the letter from the hospital, the kitchen door closing, and the sound of them crying.

At the time, I felt confused, ashamed, and acutely aware that my version of “normal” had just changed.

Hard times

From the age of sixteen, A&E became somewhere I knew all too well. I’ve had my fair share of falls, including down escalators, and gave hospital staff plenty of practice patching me up.

I experienced both grand mal seizures and petit mal blackouts, the full spectrum. For me, the aftermath of a seizure wasn’t just minutes or hours. It felt like a month of physical and mental exhaustion.

Life, of course, doesn’t pause. In 1993, I was caught up in the Bishopsgate bombing, which triggered my last major episode. It was a stark reminder, much like epilepsy itself, that life can change in an instant.

Fear and silence

In the 1990s, I lost a job because of my epilepsy and the ignorance of an employer who is still in the hospitality industry today. Looking back, I’m actually grateful. It made me stronger.

Like many people, I’ve faced discrimination, offhand jokes, and comments like “you don’t look epileptic.” Each experience toughened me and made me more selective about who I surrounded myself with.

I once wrote a LinkedIn post about my epilepsy, then deleted it straight away because I was worried it would affect my career. Even now, I know that risk still exists. But being true to myself matters more.

Everything changed when I found out I was going to be a dad.

Suddenly, managing my epilepsy wasn’t just about me. It was about responsibility and making sure I didn’t drop the baby instead of the frying pan.

That’s when I met Professor Sander, who found the medication that has kept my epilepsy under control ever since. It has now been over 30 years.

The label

I want to be known as Mark, not “an epileptic.”

Labels belong on jars, not people.

Discrimination still exists, but so does the opportunity to educate, especially the next generation. Teaching kindness, understanding, and that “different” never means “less.”

Epilepsy isn’t just about seizures. It’s the side effects of medication, the fear of losing control in public, the exhaustion afterwards, and the quiet resilience it takes to carry on each day.

If you ever find yourself in this situation, knowing what to do can make a real difference.

Read the Epilepsy Society guide on what to do if someone has a seizure.

Don’t be afraid to talk about it, but don’t let it define you.

You are far more interesting than your nervous system.

Your story is yours. It’s filled with strength, humour, and resilience.

You are so much more than a label.

Mark