My experience with autoimmune encephalitis: a year of recovery

My time in the hospital

Upon checking into the hospital, I was severely confused and could not advocate for myself. Completing simple tasks, such as dressing myself in a hospital gown, remained a challenge. Despite COVID-19 restrictions, my mum was by my side and supported me through numerous medical tests, including an electroencephalogram, lumbar puncture (also known as a spinal tap), MRI and CT scans, and various blood and urine tests.

Within 48 hours, my doctor suspected AE and promptly put me on a high dose of intravenous corticosteroids. It’s difficult to fully describe the impact of the steroids, but I can summarise it as everything suddenly making sense to me again –  and my family were elated to see it.

Recovering from AE

The journey to recovery was not easy: I felt like I had been in a car crash and everything that had happened was an awful dream. I felt like a robot controlling my body for the first time – speech, thought and movement all under shaky manual control. I felt like my brain was being reacquainted with my body. I was delicate with myself during this time, treating myself as I would a close friend. I coined the term ‘patient imposter syndrome’, as I felt like this illness could not have actually happened to me.

I had to put my life on pause following my discharge from the hospital, and was told there was no concrete timeline for healing. Unlike a broken bone, it is very difficult to monitor how a brain is recovering.

The lack of AE research was frustrating. The first case was officially recognised in 2007, and the main thing that is known about the condition is using steroids as the first line of treatment. I would spend days reading every paper on AE that I could find, searching for answers to all my questions so I could unpause my life. I felt comfortable wading through the scientific literature, with reports becoming like bedtime stories. I clung to hopeful statistics and terms such as ‘monophasic illness’, and researched every medication I was prescribed.

I passed the time by going on long walks, listening to music, doing still-life drawings and exercising daily. I was rarely alone, with each member of my family feeling like a different burst of healing energy that I needed to make it through the day. I am eternally grateful to them.

There was a time when I thought I would never be able to process what had happened to me. I could not see this experience ever settling into the story of my life, nor my identity. Ten months on, however, I’ve found that being in the health and science space has been invaluable to moving forward.
 

Reflections on my experience

It can be difficult to see the mind as a ‘body part’, to recognise that the 86 billion neurons in our brains can malfunction just like any other cell in the body. Having studied neuroscience, it was slightly easier for me to understand this and place a healthy amount of distance between my identity and AE. The brain has tell-tale signs indicating that something is physiologically wrong, yet neurological conditions remain elusive when it comes to diagnosis and treatment. Despite the immense importance of brain health, the physical and cognitive symptoms of neurological diseases are often evaluated separately. This can delay treatment because physical symptoms may be prioritised over cognitive ones, and cognitive symptoms may be mistaken for psychiatric ones during diagnosis.

I feel extremely lucky that I was in the presence of my parents and doctors who listened to me and took my condition seriously, as many stories about people with AE are not as straightforward as mine. I hope to help end the stigma around neurological conditions and demonstrate that, unfortunately, cases like this can happen to anyone, completely out of the blue, and may look different for each person. AE is treatable with timely intervention. Sharing stories like mine can help raise awareness of the symptoms of AE and other neurological conditions, so people can access the treatment they need as soon as possible.

The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.