Behind The Spoonie Society

Living With Encephalitis

Living With Encephalitis

At just 22 years old, Olivia Miles was diagnosed with a rare form of the autoimmune disease Encephalitis (Anti-NMDA Receptor Encephalitis).

“One day my mum found me on the floor of a bathroom in our home with a purple face, making strange movements and noises and unconscious,” shares Olivia.

She was then admitted into the Neurology Ward at The Alfred Hospital where neurologists determined she’d experienced a tonic-clonic seizure.

“Whilst I was briefly aware of what a seizure was, I'd never heard of an autoimmune disease and I truly didn't understand what was occurring within my body,” Olivia explains.

Countless immunosuppressive treatments eliminated the encephalitis, however five years after her initial diagnosis, it returned, along with ongoing epilepsy.

The past eight years has been a journey of ups and downs for Olivia, who says she’s changed the way she views the world.

 “Whilst the chronic illnesses, destructive side effects and altered mental states have negatively impacted my life across, it’s also resulted in what I felt was an unimaginable change in my life that I previously resented, I currently feel as though I have experienced an unknown number of highlights due to this,” she says.

“This began with the countless memories that wouldn’t have been made without creating friendships with many individuals experiencing similar medical situations and joining several Foundations surrounding these illnesses.

“I now see the world I currently live in and the way I experience my life with these illnesses differently.”


What is Encephalitis?

Encephalitis is a rare condition resulting in inflammation of the brain. There are multiple causes, including viral infection, autoimmune inflammation, bacterial infection, and insect bites, however sometimes the cause can’t be identified.

Though it isn’t always, encephalitis can be life-threatening. Therefore, diagnosis and treatment are critical, as it's difficult to predict how encephalitis will affect each person.

Common symptoms?

Symptoms can vary from none at all, to flu-like symptoms such as fever, stiff neck, headaches, aches or fatigue. In some cases, Encephalitis can cause more severe symptoms too, such as confusion, seizures, speech issues or loss of body sensations.


Depending on severity, treatment usually includes bed rest, hydration, and anti-inflammatory medication. Heat packs can also help with headaches and muscle pain. Anti-viral medications are common, and in more serious cases, hospital treatment may be necessary. Some people may need help with speech therapy, occupational therapy or physiotherapy to manage longer lasting symptoms.

The future?

Olivia says while her current world may not have been the one she thought she’d build for herself, she couldn’t be more grateful for the support from those around her.

“It’s changed the way I see the world around me today as a result of these experiences and understanding that we can never expect any minute, hour or day to be exactly what we predicted it to be.

“This has truly assisted me throughout the countless unpredicted situations in this life.

“Today I’ve chosen to accept and take control of whatever I can in any way, shape, or form despite all that may be presented to me. Whilst my future is unknown, I’m no longer afraid to live in this life despite what may arise.”

Sep 08, 2022

Wow Liv. You are such a loving and brave soul.

Leanne Sheil

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