After developing ADEM at the age of nine, Nicola’s story reflects on the long-term impact of encephalitis, including memory loss, fatigue, confidence, invisible disabilities and the ongoing nature of recovery.

Before I became unwell

When I was nine years old, my life changed in a way I could never have imagined. Before encephalitis, I was a creative, energetic child who loved art and swimming. Swimming was a huge part of my life, and I worked hard to improve. I was confident in the water and looked forward to every lesson.

Early warning signs

Looking back, there were signs that something wasn’t right. The day before my first seizure, I was unusually sluggish. I was exhausted, confused and lacked my usual confidence. I remember not being able to pass my swimming test, something that would normally have been well within my ability. At the time, none of us realised these subtle changes were warning signs of something much more serious. After the seizures, I was not able to swim for over 1 year.

Diagnosis and uncertainty

When I became unwell, my symptoms progressed rapidly. I experienced seizures, confusion and significant short-term memory loss. Initially, doctors believed I had a brain tumour, which was terrifying for both me and my family. After further investigations, I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM), a rare form of encephalitis. Although having a diagnosis brought some answers, it also marked the beginning of a long and uncertain journey.

Memory loss and recovery

One of the hardest parts of my illness was losing my memory and struggling to understand what was happening around me. As a child, I couldn’t fully comprehend the seriousness of my condition, but I could sense the fear and uncertainty around me. Recovery wasn’t simply about getting physically better; it meant rebuilding skills and confidence that had once come naturally as well as maintain social stability.

Living with invisible effects

The effects of encephalitis didn’t disappear when I left hospital. My short-term memory had been affected, and I had to adapt to challenges that other people couldn’t always see. Fatigue, confusion and a loss of confidence became part of everyday life. As a child, it was difficult to understand why I couldn’t do things in the same way as before, and it was even harder when other people assumed I had made a full recovery because I looked well.

What encephalitis has taught me

Despite these challenges, my experience has shaped who I am. Living with the long-term effects of encephalitis has taught me resilience, determination and compassion. It has shown me that recovery is rarely straightforward and that invisible disabilities deserve just as much understanding as visible ones.

What I wish people understood

I wish more people understood that recovery from encephalitis doesn’t end when someone leaves hospital. The cognitive and emotional effects can last for years, even decades, and they can have a profound impact on education, confidence, relationships and everyday life even if not immediately obvious.

If you would like to speak to our support team about encephalitis, please contact our helpline.

Story published September 2026