'For years, I treated my epilepsy like a dirty secret. I'm done whispering.'

My name is Kiandra Wood, and I have epilepsy. 

Saying that aloud still feels confronting, but it's necessary. For too long, we've lived in a society where chronic conditions are hushed or judged. Anxiety is dismissed as "all in your head." Open conversations about health feel quietly discouraged. 

Some people choose not to share their medical history. That choice deserves respect. I've always been a private person myself. Lately, I've questioned whether my silence was for my own protection or simply to make others more comfortable.

Perhaps it was both. I didn't want to disrupt social settings or surprise new friendships. I didn't want to watch loved ones struggle to respond. I also didn't want others to feel I was their 'responsibility'. Maybe, if judgment weren't the default, more people would speak openly. More people would know how to listen. 

Epilepsy is something I think about every day, even when I don't want to talk about it. What I no longer want, is to feel ashamed of naming a condition that is already part of my life. 

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I'm not here to glorify epilepsy. Living with a neurological disorder brings daily anxiety, medication, side effects, the weight of feeling like I'm letting my loved ones down, and the constant fear of seizures. It's not something I would wish on anyone. It's unpredictable. 

For a long time, I treated it like a secret. I tried to minimise or soften it. Maybe so I could pretend I didn't have it, or so it wouldn't make others uncomfortable. Or I feared it would make me seem "less than." 

But I'm done whispering. 

I was diagnosed at 17, in Year 12. It was already a period marked by high stress and growing pressure to succeed academically, socially, and athletically. My life shifted overnight. Olympic sporting dreams were paused. Parties disappeared. Sleep became my medicine. 

Hospital visits, medication changes, brain scans and tests, psychologists, and ICU stays replaced a normal teenage rhythm. I went from an energetic, sport-obsessed teenager to a stranger in my own body; exhausted, foggy, and trying to make sense of a condition with no rulebook. 

Epilepsy is terrifying because it offers no predictability. You learn your triggers and limits while simultaneously grieving the person you were before the diagnosis. It isn't just a medical adjustment; it's an identity fracture. 

What carried me through was people. A fiercely supportive family. Friends who made space for humour because normalising it felt better than tiptoeing around it. Not because it's funny, but because laughter made it survivable. 

As I got older, I learnt to hide it. Not out of shame, but because I didn't want to be treated differently. I didn't want pity, assumptions, or special handling. I wanted to live quietly and competently. I don't want to be defined by a medical condition.

Chronic medical conditions are isolating in ways that are hard to explain. You carry fears that others don't have to consider. You learn how carefully you must trust people with your vulnerability. You absorb judgments, often from those who don't try to understand. 

Maybe one of the hardest parts of living with a chronic condition is that most people don't really understand it, and maybe that's because we're too scared or too ashamed to talk about it, or because it really is invisible. 

I face challenges most people never have to think about. I'm advised not to carry my babies down the stairs by myself or change their nappies on a raised change mat. I can't swim by myself or ride a bike alone.

I have to plan around seizures. No late nights, no baths alone, careful showers, constant medication check-ins, blood tests, and medical reviews. I live with the fear of leaving loved ones too soon due to SUDEP (Sudden Unexpected Death in Epilepsy). I navigate restrictions that affect everyday freedoms, such as driving.

Every choice, even the small ones, carries extra weight most people can't imagine. 

Friends and family care, but they can't fully grasp it, because so much of it is invisible. And a lot of the time, we keep it hidden not to burden anyone, but because it feels too heavy to explain. I want to change that. I want to create space for honest conversations, ones we don't have to whisper, because sharing even a little of what it's really like can make the unknown a bit easier to understand. 

I remember one morning on the train to school. I was alone. Somewhere between stations, I had a seizure. I don't remember it happening, only waking up disoriented at a stop I didn't recognise. My mouth tasted metallic, and drool was slipping down my face. One arm was paralysed and wouldn't move as it stiffened to the side of my body; my muscles ached. And my head felt like it had been split open.

People stood around me, eyes forward, silent. No one asked if I was okay. No one checked in. 

Looking back now, I honestly don't think anyone knew what to do. There is little awareness about chronic medical conditions now, let alone over ten years ago. 

I remember the overwhelming shame before the fear, the instinct to disappear, to be invisible. I assumed they thought I was on drugs. I stumbled off the train and cried on the platform, exhausted, humiliated, shaken, and painfully aware of how alone I felt in that moment. 

Then, I crossed platforms, got back on the train, wiped my tears, reassured myself, and had some Panadol (which did nothing). I went to school. I sat in class. I carried on. Not because it didn't matter. Not because it wasn't traumatic. But because I refused to let epilepsy take more from me than it already had. And I didn't tell my loved ones because I didn't want to have to manage their concerns as well.

That day didn't break me; it quietly proved how strong I already was. 

Epilepsy brings out a range of challenges in our everyday lives. Dating was awkward at first. Some partners knew me before my diagnosis and walked beside me through it. Others tried to understand. But the truth is, unless you live with epilepsy, it's hard to fully grasp it. I don't have family or close friends with the condition (thank God for that), but that loneliness can linger, usually when you least expect it. 

My husband has been a constant source of strength for our family and me. Together, we manage stress carefully. Pregnancy was high-risk. Motherhood became intentional and structured so I can show up as the best version of myself for my son and my family.

He also taught me that saying 'no' is not a weakness but a form of self-respect and self-preservation. Something I'm still learning to practise without guilt. 

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For years, epilepsy made me feel inadequate, as though there were a better version of me out there, the non-epileptic one. But after 15 years, I've learnt this: epilepsy has taught me more than it has taken from me, and for that I am thankful. 

It taught me patience, compassion, and the resolve to keep going. It taught me early that life is fragile and precious. People often say, "You just live with it," but that barely scratches the surface. 

I'm fortunate. My epilepsy is now well-managed. Many aren't. Some experience seizures daily or have heartbreakingly lost loved ones to epilepsy and so many other chronic conditions.

That's why awareness matters. Silence helps no one. 

Until we understand epilepsy or any chronic condition better, silence only isolates. Speaking up doesn't make us weak. It doesn't make us a burden. It makes us human. It creates space for empathy, for understanding, and for connection. 

When I was first diagnosed, I wish there had been more open, inclusive conversations, so this is my attempt to be that voice. 

I'm done whispering. I say it out loud, not with pride or shame, but with acceptance: I have epilepsy. I live with uncertainty. I live with fear. And I live with strength I didn't choose, but learnt to carry. 

For anyone who has been surviving in silence, know this: you don't have to anymore. 

Epilepsy, like so many other chronic conditions, deserves understanding, not discomfort. If one honest conversation can make someone's hard day feel a little lighter, a little less lonely, then this is worth saying out loud. 

This is me owning my story. And it's an invitation for all of us to do the same.

Feature Image. Supplied.