Evie shares her story of recovery, resilience, and finding hope after Anti-NMDA receptor encephalitis

When everything changed

Ten years ago, after initially becoming ill with what seemed like the flu, my life changed completely. I began experiencing severe personality changes, including paranoia, before suffering seizures that led to me being placed into a 48-hour induced coma. After a week in hospital, I was discharged because doctors still did not know what was wrong.

Getting a diagnosis

Shortly after returning home, my condition rapidly worsened. I became psychotic, experienced hallucinations, and suffered further seizures. I was admitted back into hospital and after countless lumbar punctures and blood tests, they finally found an antibody that led to my diagnosis and treatment for Anti-NMDA receptor encephalitis.

Relationship breakdown

During my 10 weeks in hospital, the relationship I was in ended after my then partner was unsupportive and told me that he missed “the old Evie.”

That heartbreak deeply affected my recovery at an already traumatic time. I moved back into my family home, where my family cared for and supported me through the hardest period of my life.

Treatment and early recovery

I remember feeling a lot better after having the IVIG treatment in hospital and then continued on anti-seizure medication, steroids, anti-psychotic medication at home.

The long road back

Looking back, I believe it took me 2 to 2.5 years to recover, I felt impatient during this time and struggled with the lasting effects of my illness and often found it impossible to explain how I felt. The overwhelming feeling of being “different” has never truly left me.

At that time, I struggled with the effects of medication, lost confidence in my appearance, and desperately wanted to return to work. At my core, it felt like I was unable to function independently, no longer able to look after myself and meet my own needs.

Living with lasting effects

Even ten years on from my diagnosis, I still live with many of the lasting effects of Anti-NMDAR encephalitis. I continue to have to work at my mental health, memory, concentration, fatigue, and feelings of dissociation, often finding it difficult to explain how I feel to others. Encephalitis seems to pose so many “silent struggles.” Ultimately, I am thankful to have the chance to face these challenges and work through them each day.

Finding gratitude and healing

Being faced with the reality that my life could have ended at just 20 years old taught me to be grateful for every moment. I now feel incredibly lucky to be a mother to two beautiful children, and I have found a sense of peace and healing in motherhood that has helped me profoundly throughout my recovery.

Sharing my story

Having recovered from encephalitis I feel a responsibility in sharing my story and volunteering with Encephalitis International, I hope to honour everyone whose lives have been forever changed or sadly lost to encephalitis, while helping to raise awareness of this devastating illness.

Evie has also recorded a podcast episode with us which can be seen on our YouTube channel

Story published September 2026