I was 16 when my life changed forever. One moment, I was a healthy, active teenager on the Victorian Athletics Team, and the next, I was on the floor, unable to move, speak, or breathe properly. It was a terrifying experience, and what made it even scarier was the reaction I received from those around me.
When the paramedics arrived, I was disoriented, confused, and exhausted. My dad was trying to help me stand, but I kept collapsing. Instead of concern, I was met with a dismissive attitude. The paramedic told my dad, 'It's a panic attack. Probably too much caffeine.' Turning to me, they said, 'Come on, get up.'
I felt a wave of shame. Was I overreacting? Was it all in my head? This moment haunted me as the seizures continued, and I questioned myself. But here's the thing no one talks about enough: epilepsy doesn't always look the way people think it does.
Most of us carry a limited, TV-drama version of what epilepsy 'should' look like, until we've seen a seizure up close. In truth, epilepsy is invisible, until it's not. My first seizure was a tonic-clonic seizure, where my body stiffened and jerked uncontrollably, and my breathing became shallow. But at the hospital, my MRI and bloodwork were clear, so I was sent home, doubting myself and without answers.
Luckily, my dad kept pushing. He knew something wasn't right. Eventually, I was referred to a neurologist who listened and believed me. He explained that a single seizure doesn't always mean epilepsy, and most of the time, it won't show up on scans unless caught on an EEG while happening. So, I went back to life, hoping it was a one-off, but it wasn't.
A few months later, it happened again, and this time, it didn't stop. I started with a strange feeling in my stomach, my arm went numb, and I couldn't speak. I was having an aura, a type of focal seizure. My dog curled up beside me as I slipped in and out of seizures. Eventually, I collapsed again, and this time, I woke up in the ICU.
I was told I'd been seizing on and off for hours and that doctors considered a medically induced coma. That's when I got the diagnosis: generalised epilepsy, a neurological condition where seizures affect both sides of the brain. It wasn't caffeine, anxiety, or in my head. And it wasn't my fault.
Since then, I've learned how common it is for women, especially young women, to have their genuine medical concerns dismissed or misdiagnosed as 'just stress,' 'hormones,' or 'anxiety.' Dismissal lingers, making you second-guess your body long afterward. This isn't just a personal story; it's evidence of a pattern—a wider, systemic issue of not being believed, especially for women.
We need to replace assumptions with listening. Change begins with belief. Epilepsy and other invisible disorders aren't always easy to spot, but that doesn't make them any less real. For me, epilepsy means more than seizures; it's memory issues, fatigue, anxiety, constant worry, isolation, and learning to live with something people often don't understand.
However, it has taught me to listen to my body, advocate for myself, and push back when not being heard. And, perhaps most importantly, it has taught me that I'm not alone. So, if you've ever been told that 'it's just in your head,' keep asking questions, trust your body, and speak up. Your symptoms are real, your experience matters, and you deserve care, not doubt.
Let's change the way we respond, especially to young women. Let's stop whispering about epilepsy and talk about it. Let's make invisible disorders and chronic health conditions visible. Because being dismissed isn't just frustrating—it's dangerous. Today, my epilepsy is well managed, and I share my story to raise awareness and offer support to anyone who's ever felt unheard or dismissed. Your voice matters, your experience is real, and you're not alone. And no one should have to end up in the hospital just to be believed.
