Emma-Louise’s childhood was shaped by epilepsy, exclusion and loss. Diagnosed after a traumatic accident at age seven, she faced bullying, misunderstanding and mental health struggles. But Emma-Louise has turned her experiences into something powerful - a book that offers support through the fictional character of Jo.
In her own words, Emma-Louise has “gone from life’s not worth living - to my purpose is to help others”. That sense of purpose has found a voice in her debut book. Jo’s Hidden Secrets follows Jo - a fictional character based on Emma-Louise - through childhood epilepsy, mental illness, domestic abuse and poverty. Its sale is raising funds - while the book itself raises awareness by including information on how to find support.
I felt like I wanted to share my experience. A lot of people with epilepsy have mental health problems and, you know, I just wanted to help them not feel alone
From accident to diagnosis
Emma-Louise’s life changed forever when she was just seven years old. A family walk along the Bristol and Bath railway path turned into a traumatic accident.
I tripped on the railway track and smashed my head on a sleeper. A week later, I was rushed to hospital with suspected meningitis. It turned out I was having a seizure.
That fall triggered the epilepsy that would shape her childhood and adolescence. Diagnosis came after a series of EEG tests, and she was put on medication.
My Mum said the first drug totally changed my personality. I went from a quiet, shy girl to aggressive and angry.
Back then, they only really knew about the big seizures - tonic-clonic. No one realised I was also having absence seizures.
Eventually, she was switched to sodium valproate, which helped control the seizures but brought other challenges.
I was constantly hungry. I put on weight and was bullied for it.
School and exclusion
Misunderstanding and isolation marked Emma-Louise’s school years. Teachers mistook her absence seizures for daydreaming.
They told me off for not paying attention. Some teachers got frustrated and just moved me down a level.
And bullying was relentless.
I felt really hurt, upset, and isolated. I didn’t have many friends. I felt the odd one out.
Comfort eating worsened her weight issues and deepened her sense of exclusion.
There was little support available.
I didn’t know anything about charities. My neurologist was nice but old-fashioned. I didn’t know who I could talk to.
Loss and trauma
At 13, Emma-Louise met her first boyfriend.
He was lovely, but he didn’t tell anyone he had epilepsy. He died having a seizure in his sleep. His brother found him wedged between the bed and the wardrobe.
She was a victim of violence in her second relationship and she felt trapped.
I needed a carer. I didn’t realise the stress of being with him was making my seizures worse. They went from one a year to five a day.
The trauma compounded her mental health struggles. She developed an eating disorder and began self-harming.
I felt really isolated and alone. I started dieting at 13, lost weight, then gained it back. Eventually it spiralled into anorexia.
Workplace discrimination
Emma-Louise’s epilepsy and mental health issues made holding down a job difficult. She lost her driving licence three times and was dismissed from several roles. One manager, she said, made her life a misery.
He couldn’t sack me, but he wanted me to leave. The stress made my seizures worse.
In one job, the pressure became unbearable.
He called me into the office and said I was a health risk. I snapped, grabbed scissors off his desk and slashed my wrists in front of him.
She was hospitalised for a month and signed off work for six.
Even after returning, the discrimination continued.
They moved me to what they called the lowest department. The manager said, ‘She’s got epilepsy - that’s all you need to know.’ I felt like passing the parcel - dumped here, dumped there.
Jo’s Hidden Secrets
In Jo’s Hidden Secrets, Emma-Louise has channelled her experiences into her book.
Jo is based on me. My book covers every challenge I’ve experienced - from the head injury that caused my epilepsy, to bullying, depression, anxiety, eating disorders, and being in a difficult relationship.
Inside the book, readers will find a list of charities that offer support for people facing similar difficulties.
Every pack contains my book, plus leaflets from about 10 different charities - epilepsy, mental health, domestic violence, young carers.
Emma-Louise has donated copies to local libraries and raises money to send support packs to schools.
Out of the £20,000 we've raised, most has gone to epilepsy charities. But it's also funded 1000 packs for schools.
A message of hope
Her message to young people is clear.
You are worth something. You’re not alone. There are charities out there to help you. It’s important to talk about how you feel and ask for help.
Through her writing, fundraising and advocacy, Emma-Louise is making sure that others don’t have to face what she faced alone.
That’s what keeps me going.
