There were really no advanced warnings for me, that I recall. My partner was in hospital following an accident and I was home alone and working from home.

The alert to my severe symptoms were raised following a call to a friend in hospital at 4:00am in the morning for a chat (previously those closest to me had noticed some changes, however I did not want to bother the medical community as my symptoms were not impacting my functioning). On the day of my admission my closest friend who is a psychiatric nurse of some 30+ years decided to do a welfare check. Upon her arrival she found me rambling to myself and wandering around my home. She decided to ask me to get into her car, her only other option was the police intervening. I complied and she drove me to the closest hospital. Unable to diagnose or determine what was wrong I was transferred to one of the largest hospitals in the City and have vague memories of what took place.

I remember being admitted to the major hospital and bits and pieces only, but thankfully I remembered being told not to worry. After another transfer to my final hospital, which I do remember, the testing continued with my diagnosis of autoimmune encephalitis made about a week after my first admission. I have little recollection of the early days in hospital, however there was an overall sense of calmness, mainly due to me not know anyone, anything or why I was there. A friend, who I had known for a long time, was a regular visitor. They slowly reintroduced me to my life, my partner, and what had happened to me. She also slowly shared things that were going on in my world before the attack, using her qualifications in psychology to monitor my progress.

When I was introduced to my partner (of 30 years) I initially had no clue of who they were. Over the next two weeks I was able to get to a point where I would return home and slowly try and put the bits of my life back together. Bit by bit and very slowly my world became a little larger than feeling calm, with a sense of not worrying about things I had forgotten and focusing on those things I had control over.

Some 18 months later I am still with my partner, no longer working, and slowly putting my life together. Everyone says that I do not seem worried about my condition. But, it is not a worry as I have a medical team who looks and watches me very closely so I know that I am in good hands. My retirement plans have naturally changed, as has may believe of what is important to me.

So today I am getting better still. My new normal is very high functioning and progress remains steady. Planning for what it is next is easy to consider and discuss. I am lucky my disability is only regarding my short term memory. It means things come back at the most bizarre times. It is kind of like being a kid again exploring this world that I actively participated in prior to my condition emerging.

So am I lucky … I don’t think so. I have an amazing medical team who are with me every step of the way. Luckily for me each one of them has seen this condition and finds it interesting. They communicates what is going on fully and without sugar coating the downside. I also have two wonderful supporters who see me through think and thin on a daily basis. Long time friends that are also interested in the condition, but also take the time to educate themselves so we all work together to make sure life does not become too hard for anyone.

One thing I must say however is … it is a journey. Yes, people who don’t know can be cruel. People who do know can also be cruel. But that’s life. I think in a way encephalitis has helped me see that it is still a wonderful life to navigate full of laughter and fun.

Some observations made from people close to me:

‘I am far more patient’

‘For some reason I no longer suffer from boredom’

‘I am no longer worried by things outside my control’

‘My focus is on what I can do rather than what I used to do or can’t do … I suspect due to my memory issues :-)’.

Story published May 2026

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