Your Stories
Your Stories
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.
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. The videos can also be viewed on our YouTube channel.
Share your story
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.
If you have any questions please do get in touch.
Anti-NMDAR Encephalitis Lived Experience - Megan's Story
It started with neurological symptoms such as difficulty processing information (forgetting song lyrics and inability to write emails) as well as visual symptoms (losing colours and pixelated vision) and paranoia. I also could not feel emotions or pain. After admission to the hospital, these symptoms worsened (inability to understand or process anything, couldn’t eat or use bathroom). Things then progressed to constant seizures.
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Anti-NMDAR Encephalitis Lived Experience - Tina's Story
Did you ever think it was possible that you could fall pregnant and then lose your mind? Lose your mind to the extent that even to this day I still don’t remember ever being pregnant, I don’t remember my pregnancy, my growing bump, my feelings or even going through the life changing experience of giving birth.
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Anti-NMDAR Encephalitis Lived Experience - Camila's Story (English and Spanish)
When I first learned about anti-NMDAR encephalitis, it felt like I was destined to become a diagnosis, as if my life had already been defined by a disease. But it wasn't until I began fighting it back it that my life truly began a whole new journey.
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Anti-NMDAR Encephalitis Lived Experience - Tom's Story
May of 2022 I once again got COVID-19 but this time was mild, or so I thought. Slowly my fatigue got much worse and my speech started to be hard. Processing was becoming harder and I was having headaches and crazy nightmares that I would wake up sweating, confused and scared. I was attending speech therapy and was a regular at my primary and neurologist. Everyone close to me could see me getting worse.
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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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Anti-NMDAR Encephalitis Lived Experience - Tahla's Story
Tahla had autoimmune, Anti-NMDAR antibody encephalitis when she was 15. She spent 6 months in hospital, losing her ability to walk, talk, eat, drink, as well as experiencing psychosis and aggression.
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HSV Encephalitis Live Experience - Amanda's Story
The first couple of months at home were a period of extreme tiredness and I slept many hours at night and also had a great deal of rest time during the day. One of the difficulties besides memory was my loss of language, even English. I have learned many words again but have not been brave enough to start my foreign language classes. The difficulty speaking was obvious when I was taken down to visit my colleagues at my workplace. I found it very difficult to speak clearly and remember many everyday spoken words.
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HSV Encephalitis Lived Experience - Chris' Story
I was rushed into hospital in May 2021 after losing consciousness and spent 2 days in intensive care. The hospital struggled to identify the problem, misdiagnosing my condition twice. I was eventually diagnosed with HSV encephalitis on day 10 of my admission. Following treatment I was discharged after 5 weeks with limited knowledge of what had happened to me or what to expect and almost no support. It’s been a long and often traumatic 3 years since. However, I am now pleased to say that I have made a good recovery and have minimal physical residual symptoms.
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Meningoencephalitis Lived Experience - Amy's Story
The following weeks were a blur for me and were incredibly stressful for my family and my husband as doctors struggled to put a label on what was happening to me. Various diagnoses were ruled out and meningoencephalitis was eventually established. Eventually a specialist MRI interpretation diagnosed listeriosis and it was suggested that having a low immune system postpartum may have contributed to the severity of my illness. During this time I was in and out of consciousness, I suffered tremors, headaches, hallucinations and incredibly vivid dreams.
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HSV Encephalitis Lived Experience - Daniel's Story
Although I was very young and don’t remember actually having encephalitis, having navigated through life for 31 years following it, I know I have had it. It is a part of me. It’s with me wherever I go, but it doesn’t define me or who I am. I consider myself, unique. I have always been “different” from others. Always outlandish, always the first to speak and last to stop. As a survivor, I use the term survivor loosely because frankly, no one survives encephalitis as the after-effects never go away, but, as someone who has, through trial and error, through embarrassment, through humiliation, through anger and unadulterated hatred learned to live, cope and succumb to the effects of encephalitis, I am proud not only of my achievements, not only for having some incredible people in my life, but proud to have been able to be simply, me.
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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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Unknown Encephalitis Lived Experience - Steven's story of his mum
My journey took an unexpected turn when encephalitis struck my family, taking away my beloved mum. It was a devastating blow that changed my life in ways I never could have imagined. At the same time, I was learning my craft as a teacher, trying to support my students and navigate the complexities of the classroom, all while the world was in the grip of the Covid-19 pandemic.
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Seronegative Autoimmune Encephalitis Lived Experience — Matt's Story
Those two weeks were a blur I know only through stories from my family and doctors. I was tested for serious illnesses like EEE, West Nile, and Zika, all of which came back negative. Then things got even more frightening—I began losing vision and experiencing double vision, though I don’t remember this myself. My body was scanned for cancer, but thankfully, that came back clear too.
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Viral Encephalitis Lived Experience — Julian's Story
During the following 2 weeks, the doctors had spirited debates about the nature of my illness. At first, it was whether I had brain leukaemia or viral encephalitis. Then, when the evidence ruled out leukaemia, it was which type of viral encephalitis; they never found out, with all the tests coming back inconclusive. All the same, there were no known treatments for most types of viral encephalitis. I was given herpes antivirals as a Hail Mary. All anyone could do was wait and see. My body and my brain were the deciding factors now.
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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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VZV Encephalitis Lived Experience — Tim H's Story
Tim, a father of two young children, felt like he was suffering from flu after a short holiday with his family. He began to feel worse and started to hallucinate. The doctors diagnosed him VZV encephalitis. Here he shares his story.
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Viral Encephalitis Lived Experience — Graham and Sandra's story
During the My Brain: My Story event at the Liverpool Medical Institution, Graham delivers a presentation on the effects of viral encephalitis on him and his wife Sandra 22 years ago and how their family continue to manage its outcomes together.
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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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Lived Experience of Encephalitis — Eduarda's Story
"After the three days I only got worse, so my mum took me to the hospital again. She later told me that on the way to the hospital I started saying things that didn’t make sense. I asked her several times where we were going and why. Within one hour of arriving at hospital, I had two seizures and was sent to the ICU. I don’t have any memory of this, as a matter of fact, I don’t have any memory of most of 2022..."
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Herpes Simplex Virus Encephalitis Lived Experience — Jim's Story
Jim's career included 20+ years with the Port Authority of NY & NJ; however, as a result of his herpes simplex virus encephalitis diagnosis, he retired last February.
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Viral Meningoencephalitis Lived Experience - John's Story
Before developing encephalitis, John worked as principal teacher in a large school for children with complex learning needs in the center of Dublin. He was actively involved both locally and nationally on Education Boards and worked part-time in three of the teacher training colleges. He has been playing piano since he was a child and is convinced that his passion for music was a fundamental part of his recovery.
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Encephalitis and Bereavement Shared by Parents, Louise and Richard — Henry's Story
Henry's parents, Louise and Richard, share the trauma they endured when Henry died. Henry spent one week in hospital after his parents recognized that something wasn't right. After many tests, and eventually surgery, Henry sadly passed away from encephalitis a few days before his 9th birthday.
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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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