I was unconscious – a stranger dumped me in an underground car park

Hayley Allen

Published March 19, 2025 1:50pm Updated March 20, 2025 3:59pm

I didn’t really have any friends throughout school. Having epilepsy meant people were scared of me.

They treated me like I was a ticking time bomb and at any moment, I could go off. The bullying was relentless. I missed a lot of school to deal with my condition so I wasn’t as switched on as some of the other kids in my year; I was called ‘r****d’ and all sorts, and told that I was ‘dumb’.

In fact, I’ve rarely had a good reaction to my epilepsy. As a baby, one relative said it would be God’s will if I died from a seizure. And I will never, ever forget the look of terror on my grandad’s face the first time he saw me seize.

Today, my parents and grandparents are amazing and incredibly supportive but there is still so much ignorance about epilepsy. People fear what they don’t understand. Rather than saying, ‘OK, this is scary’, it’s easier for them to just switch off and do nothing.

One of my life’s goals is to fight for people with epilepsy to be accepted, not shunned with the stigma dumped on them. Epilepsy is just one small part of who you are. It doesn’t define you.

For Sarah

Sarah Whiteley was a Metro columnist and much-loved member of the team (Picture: Sarah Whiteley)

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP - sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

Hayley Allen - epilepsy stigma — I’d like there to be more positive information about epilepsy out there (Picture: Hayley Allen)

I had my first seizure when I was nine months old but wasn’t diagnosed with epilepsy until I was 18 months. It was a long process with lots of tests and because I was so little, I had to be held down so that my neurologists could get clear scan images of my brain.

I became more aware of my condition as I got older. My parents tried to protect me from the nasty side of things, but I would listen to them speak to the doctors while I played with my toys, hearing them say things like, ‘If she makes it to five, she’ll be lucky’.

After that, I felt like I had to work hard to have any kind of life, and make sure I didn’t die and make my parents upset.

Glossary of terms

Tonic-clonic (formerly known as Grand Mal): the person stiffens, falls to the floor and starts to shake or jerk.

Absence seizures (formerly known as Petit Mal seizures): the person abandons what they are doing and appears to ‘switch off’; this usually lasts for a few seconds.

Myoclonic seizures (also referred to as ‘myoclonic jerks’): the person has sudden, short jerks that can affect some or all of their body. The jerking can range from very mild – like a twitch – to very forceful. They usually last a few seconds, but some people have them consecutively in clusters.

Focal seizures: a seizure that begins in one side of the brain. The person may stay fully aware, or may lose awareness. They may experience movements. Additional symptoms may also include things like changes in emotions, thinking and sensations.

Tonic seizures: if a tonic seizure starts in both sides of the brain, all the person’s muscles tighten and their body stiffens, and they may fall to the floor. If a tonic seizure starts in one side of the brain, their muscles tighten in just one area of the body.

Atonic seizures (also referred to as ‘drop attacks’): usually, the person’s muscles will go limp and they fall, sometimes resulting in injuries. Alternatively, their head may drop forward or they might sag at the knees. Atonic seizures are usually very short.

My seizures used to start in my hand then move up to my face, and you could watch it travel through my entire body. I also had cluster seizures; I could seize for 24 hours at a time for a week, and then I’d be good for a little while, and then start seizing again.

As an adult, I mostly have focal seizures, so I’m awake, but I have had tonic-clonic seizures, too.

At primary school, one teacher locked me in a storage cupboard while I was seizing so the other kids didn’t have to see it. I didn’t tell my parents, terrified the teacher would do worse to me, and too worried that I’d done something wrong.

Eventually my mum heard through the playground grapevine and asked me if there was any truth to it. I broke down crying.

When I was 26 or 27, I was out in town on my own – being independent is really important to me – and knew I was about to have a seizure. I took my rescue medication and tried to put myself in a safe place but I was too late. The meds didn’t kick in in time and I collapsed.

While I was unconscious, a member of the public carried me to an underground car park and dumped me there.

When I came around, I was soaked – maybe from rain, maybe just sweat from the panic of coming out of a seizure – and covered in bruises.

I’ve had people video me having a seizure when I can’t protect myself or make them stop. Then they put the ‘funny’ videos on the Internet.

Having epilepsy also means I’ve faced discrimination in my career. At college, I was obsessed with the idea of working with children and did my level one and level two childcare qualifications. Yet when I applied to the final year, I was told I couldn’t go any further because I wasn’t reliable, that I’d be a danger to the children.

I’m now 33 and have been trying to get employed ever since. At 18, the Jobcentre used to send me to jobs that weren’t safe – they once sent me to work in a kitchen in a bar. I applied to work as a community care assistant, went in and did my training, then had a seizure in the last hour – the company never phoned me again.

Epilepsy Action

Epilepsy Action supports the 630,000 people with epilepsy every day through their helpline, information, groups and services.

The charity’s ambition is to create a world without limits with people with epilepsy. By raising awareness of the condition, too often misunderstood and invisible. By changing the narrative around it, collaborating with healthcare professionals and campaigning for better services. By working to get everyone in the UK to know what epilepsy is and how they can support.

You can donate to Epilepsy Action here.

I am up front at interviews. I tell potential employers that I have epilepsy for everyone’s safety. Then I see the shift in their dynamic, their expressions. I’ve heard all the excuses as to why I can’t move further, or even be employed at all. I’m now in the process of applying to a company to become a care assistant.

I’m living independently but that means I spend a lot of time on my own, especially as my husband works away a lot.

I know that my epilepsy could kill me. When I first learned about sudden unexpected death in epilepsy (SUDEP), my mum tried to reassure me that it doesn’t happen often but it’s just knowing that it can; I find it odd when I hear people say they are terrified of heights or spiders when I’m living my biggest fear every day.

SUDEP Action

SUDEP Action provide key services for those who have been affected by epilepsy and SUDEP.

They offer free bereavement support to those who have lost a loved one to SUDEP, counselling and assist grieving families during the inquest process.

SUDEP Action is passionate about providing information about SUDEP to help reduce risk to those living with epilepsy, as well as driving research to prevent future deaths.

You can donate to SUDEP Action here

Yet my advice, especially for children, is not to let what the doctors say scare you. Otherwise you can miss out on so many magical moments, even just the little ones – and they matter just as much as the big ones. I have wanted so much more for myself and I know I’ve lost out on so much, not having had a typical childhood, but the fact I got to have any kind of childhood is lucky.

I’d like there to be more positive information about epilepsy out there, so that people don’t think, ‘Oh, God, no’ when they are diagnosed. Epilepsy charities do great work spreading awareness and information but it needs to come from the doctors, too.

What misconceptions about epilepsy do you wish people would let go of?Comment Now

I’ve always wanted to be known for doing something good, being something good. About 10 years ago I bumped into someone who’d been a few years below me in school, and all she remembered me as was the girl with epilepsy who had the seizure at the school disco.

There’s no chance I’ll stop fighting for more epilepsy awareness and acceptance, both for the little girl inside me and the people with epilepsy who are too embarrassed by their condition – or the things that people say – to talk about it.