Epilepsy a hidden burden for Aussie women

Katelyn CatanzaritiAAP
Justine Knott: epilepsy can leave you isolated because people don't know what it's like to be you.
Camera IconJustine Knott: epilepsy can leave you isolated because people don't know what it's like to be you. Credit: AAP

Justine Knott woke in the middle of the night to a loud explosion and felt terror course through her body.

She grabbed her then nine-year-old from his bed, dragged him to the back of the house and locked him in the laundry before running back to confront whatever disaster awaited.

It took several minutes to realise there had been no blast - it was just another nocturnal epileptic seizure.

Knott, a psychologist from Melbourne, had been sleeping badly and having peculiar sensations when she was diagnosed at the age of 41.

"I had wet the bed a couple of times. I was waking up with my mouth chewed, terrible headaches, feeling groggy and confused," she told AAP.

"There were these terrible images, terrible dreams. I thought maybe there was something psychiatric going on."

Her son Jack, now 18, remembers being startled by her panicked cries.

"(She was) calling out confused with where she was, what was happening, who she was. She even forgot her name once," he said.

"She often saw an octopus on the ceiling of her bedroom."

Epilepsy is a neurological disorder associated with abnormal electrical brain activity which can cause seizures, loss of consciousness and sensory disturbance.

Australian Institute of Health and Welfare figures released ahead of Saturday's international awareness Purple Day show the condition affects about 151,000 Australians, with tens of thousands hospitalised each year.

It can lead to a higher prevalence of social isolation, mental health disorders, strained relationships and employment discrimination.

But women face additional challenges because of the impact hormones and medication can have during puberty, while on contraception, during pregnancy and breastfeeding.

This is compounded because at a time when they need the most support, many epilepsy sufferers often withdraw socially.

"You feel embarrassed ... that you're a burden," Knott said.

"You feel isolated because people don't know what it's like to be you."

These same feelings prompted fellow sufferer Ella Meredith to seek online support.

"My doctors have been really good but the focus isn't on peer support and the emotional support, it's on the treatment of the epilepsy," says Ms Meredith who was diagnosed a decade ago aged 22.

"I was never referred to a support group. Not once. And I've seen a lot of doctors."

Ms Meredith joined an online international group for women with epilepsy and she and a fellow Aussie soon decided to set up one locally.

A year later - in September 2021 - Australian Women with Epilepsy became a charity.

It already has 3000 members of like-minded women looking for advice, support or just somewhere to feel less alone in dealing with their invisible illness.

"We get messages from people saying they've never felt validated before," Ms Meredith said.

Women living with epilepsy can connect with AWE on Instagram and Facebook at @australianwomenwithepilepsy or via australianwomenwithepilepsy.org

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