Your Stories
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Here, our members and volunteers share their stories and experiences of encephalitis.
If you are in any way affected by these stories please do get in touch with our support team.
If you would like to share your own story, please visit our Submit Your Story page.
These stories are incredibly valuable for others to read. They can help people, directly or indirectly affected, to understand more about encephalitis and deal feelings such as loneliness and isolation.
We usually ask for written stories with sub-headings relating to things such as diagnosis, treatment and ongoing recovery.
We ask that you do not name individuals or medical centers without their consent. Please use generic terms such as friend, parent or doctor.
Many of the stories and videos below were filmed as part of the My Brain and Me project which is proudly supported by the National Lottery Community Fund. Funding has also been provided by GSK towards developing our My Brain and Me project. The videos can also be viewed on our YouTube channel.
If you have any questions please do get in touch.
Autoimmune Encephalitis -Keith's Story
My journey with Encephalitis began back in December 2024. I woke up in the middle of the night around 4am and started to go into a daze and felt out of it like I wasn’t right. I ended up making it to the bathroom and collapsing against the sink counter breaking 3 ribs and then […]
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Autoimmune Encephalitis - Maria's Story
The next morning, I woke up with a fever. The only thing that brought it down was paracetamol. Without it, it was constant torment: my head felt like it was on fire, I couldn’t walk properly, I was staggering. I wasn’t eating, I was dehydrating. Only IV saline and intravenous paracetamol helped. The relief lasted only as long as the medication’s effect. After a few days, I was taken to the hospital by ambulance: extremely high fever, difficulty speaking, unstable walking. Yet, after the tests, I was sent home. My vital signs were normal. They told me it was probably a bacterial infection and prescribed antibiotics.
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Autoimmune Encephalitis - Shiloh's Story
Before her illness, Shiloh loved driving, racing, fitness, nature, friends, and work. In 2022, her life changed dramatically as worsening symptoms including headaches, hallucinations, memory loss, seizures, and physical complications which led to a diagnosis of autoimmune encephalitis and a long, intensive hospital stay. Her recovery required ICU-level care at home and immense emotional, physical, and financial support from her family and community. Today, Shiloh continues to heal and has regained independence, with her family reflecting on the power of faith, resilience, love, and positivity throughout their ongoing journey.
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Autoimmune Encephalitis Lived Experience - A mother's story
On arrival he was quickly admitted with suspected meningitis and started on IV antibiotics. The next couple of days were a bit of a blur. He tested positive for Strep A and a virus, so was also started on antivirals too. His lumbar puncture was thankfully negative for meningitis so we were hopeful it was just a couple of nasty bugs which had wiped him out and he would start to improve. And in many ways, he did seem to improve, he was less agitated and even trying to eat, but at the same time he was growing weaker, he lost control of his bladder, and we couldn't get him to talk.
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Autoimmune Encephalitis Lived Experience - Philippa's Story
It was terrifying. The uncertainty, the not knowing what each day would bring, was one of the hardest parts. He spent six long months in hospital, followed by a further eight months in a rehabilitation centre. Those fourteen months were filled with fear, exhaustion, hope, and small victories that meant the world to us. Our story is still continuing and if I’m honest, it’s been nothing short of a rollercoaster.
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Autoimmune Limbic Encephalitis Lived Experience - Karla's Story
English translation - It all started in September 2022. That year, I was going out partying a lot. For Mexican Night, I went out to dinner and celebrate with some friends. Around that time, my work schedule changed to the night shift, since I am a nurse. I clearly remember spending a lot of time worrying about how those shifts would go. When I started them, my mum and sister later told me that I had mentioned suffering from insomnia and nightmares.
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Autoimmune Encephalitis Lived Experience - Pol's Story
It started on a Sunday, during a family lunch, when Pol our active, healthy 7-year-old developed a high fever. At first, we thought it was just a virus. But within days, his behavior became alarming - extreme lethargy, emotional outbursts, and sensory issues especially with his back. Then came the insomnia, strange gazes, mumbling, and isolation. As a mental health professional, I knew something was very wrong.
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Autoimmune Encephalitis Lived Experience - Diane's Story
Diane had auto-immune encephalitis in 2018, when she was 15 which encompassed months in a semi-coma state where she couldn’t talk, walk, eat or see due to complete vision loss from high intracranial pressure.
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Autoimmune Encephalitis Lived Experience - Bianca's Story
Out of fear, I wrote a letter to my daughter, who was almost 6 years old at the time. I wrote down everything she needs to know in order to be able to grow up self-loving and self-confident, in case I can't always be with her. My letter became a children's book. I have completely turned my life upside down. My everyday life is no longer the same (I often rest, divide the week differently and strengthen children in daycare centers and elementary schools.
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Acute Disseminated Encephalomyelitis (ADEM) Lived Experience - Ella's Story
My mum took me up to the hospital where they put me on a drip assuming it was just a really nasty bug, but I wasn’t getting better. Eventually, the doctors were able to diagnose me with autoimmune meningitis. I was flown in the royal flying doctors from my small town to Perth where I was admitted to a Children’s Hospital. I had a lumber puncture - which is a needle in your spine that draws fluid out that gets sent off for testing, and I was then diagnosed with Encephalitis. Encephalitis is inflammation of the brain and spinal cord.
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Autoimmune Encephalitis Lived Experience - Ana and Jesus' Story
I have been a volunteer with Encephalitis International ever since, sharing our story and information about encephalitis whenever I have the opportunity. By sharing our story at the My Brain : My Story : My Family conference, I hope to help others feel as understood and reassured as I did two years ago, when I first discovered Encephalitis International.
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Autoimmune Encephalitis Lived Experience — Kellie's Story
In late December 2022, Kellie's world was turned upside down when Arwen became seriously unwell. She was diagnosed in early January 2023 with Autoimmune Encephalitis, and thanks to the quick thinking of her paediatrician, she was transferred to a specialist hospital for the correct treatment.
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Autoimmune Encephalitis Lived Experience — Diane's Story
Diane had autoimmune encephalitis in 2018, she was 15; during the following months she was in a semi-coma state where she couldn’t talk, walk, eat or see due to complete vision loss from high intracranial pressure.
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Autoimmune Encephalitis Told by Wife, Gail — Dougie's story
Gail shares her husband, Dougie's, story of autoimmune encephalitis. Gail talks about how Dougie went from being very active - running and playing rugby - to battling through the effects of encephalitis. Dougie sadly passed away in April 2024.
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Anti-LGi1 Autoimmune Encephalitis Lived Experience — Gill's Story
In June 2023, our mum began complaining of dizziness/light-headedness that would wash over her throughout the day. During these spells, Mum was unable to speak, and she described it as a scared feeling in the pit of her stomach.
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LGi1 Autoimmune Encephalitis - Steve's Story
Steve, a vibrant, active and determined person whose love of life, sport and people shone through even in the face of a devastating illness. On this page, Lisa shares her tribute to her dear friend, Steve. Followed by Steve's own experience which he wrote before sadly passing away in 2025. The start Looking back, there were signs from as early as July 2018 (writes Lisa). After completing a half marathon, Steve described his calf muscles as constantly twitching, like “bags of snakes.” He had vivid dreams, poor sleep, and unusual stress about work.
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Autoimmune Encephalitis Lived Experience — Tony's Story
I came home from work, had a fever for a couple of days and then started having convulsions (glad I don’t remember biting my tongue) and was taken into hospital (having punched a paramedic on the way there!). From that point on, my family insisted my condition was worse than the doctors thought and finally they managed to get me in front of an expert who took my symptoms seriously.
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Autoimmune Encephalitis Lived Experience - Richard's Story
Richard, who was affected in his 20s, talks about life following encephalitis. He shares his experiences of the after-effects of his encephalitis, his interest in mindfulness, and living in the present.
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Autoimmune Encephalitis Lived Experience - Polly's Story
Polly describes her lived experience of autoimmune encephalitis including her symptoms, treatment and recovery.
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Anti-NMDAR Autoimmune Encephalitis - Macy's Story
Macy talks about her lived experience of NMDA Autoimmune Encephalitis and how she fought to maintain her joy of running.
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Autoimmune Limbic Encephalitis Lived Experience - Lorna's Story
Lorna talks about her lived experience and induced coma as a result of unknown autoimmune encephalitis and limbic encephalitis.
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Limbic Autoimmune Encephalitis Lived Experience - James' Story
Sue talks about her experience of James being diagnosed with limbic autoimmune encephalitis and how there were no warning signs. Read about his diagnosis and recovery.
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Autoimmune Encephalitis Lived Experience - Jackie's Story
This is the article that Jackie wrote about her experience of encephalitis for The Gavel, the quarterly magazine of the North Dakota State Bar Association. She talks about her diagnosis or autoimmune encephalitis.
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Autoimmune Encephalitis Lived Experience - George's Story
George was diagnosed with autoimmune encephalitis in April 2021 after 9 months of living with the condition. He writes about his illness, diagnosis, the impact of his encephalitis and his ongoing treatment.
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