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.
Varicella-Zoster Virus (VZV) Encephalitis - Dita's Story
I was diagnosed with Varicella-Zoster Virus (VZV) Meningoencephalitis on the 4th of September 2025. Early symptoms My story begins one week prior the hospitalisation. Day 1-3 I felt mild headache and dizziness that I was able to control with painkillers. On the day 3 retuning from work I noticed red rash all over my upper […]
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Viral encephalitis - Adrien's Story
There Is Life After Encephalitis: My Journey of Adaptation and Independence I was six years old when I became seriously ill in 1974/75. My family were initially told I had glandular fever, although later medical records from the hospital referred to a post-infectious viral encephalitis, possibly associated with mumps. I became critically ill and spent […]
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Viral Encephalitis - Sharmila's Story
My experience of encephalitis showed me not only how suddenly serious illness can strike, but also how deeply it can affect every stage of life long after the initial crisis has passed. I contracted encephalitis, a viral brain fever, in June 1970 when I was five years old. Before that day I was an ordinary […]
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Meningoencephalitis - Tiffany's Story
One moment really shocked me. I looked in the bathroom mirror and jumped because I didn’t recognise my own reflection. I touched the mirror to check it was real. Before I became ill My name is Tiff, and I was in my early 20s when I became ill with meningitis and autoimmune encephalitis in 2018. […]
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Autoimmune Encephalitis - Jonathan and Elle's Story
Jonathan, my husband of 21 years, passed away from health complications following a diagnosis of autoimmune encephalitis in 2024. How it started My story begins in February 2023 when my husband started acting strangely and the “essential tremor” in his hands seemed to spread to his legs. He’d been diagnosed with an essential tremor a […]
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Herpes Simplex Virus Encephalitis - Daniel's Story
Daniel sadly passed away after a few years from a diagnosis of Herpes Simplex Virus (HSV) encephalitis. This is his story told by daughter, Natalie. Symptoms and diagnosis In September 2022 my father was showing odd symptoms like confusion and flu-like symptoms. My mother took him to the hospital and after performing several testing […]
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Autoimmune Encephalitis - Elise's Story
In the last couple of days of our trip, I couldn't really understand what he was saying to me, and I just thought this was my hearing after having blocked sinuses, and because we were in a foreign country and not really talking to anyone else, I didn't know that it was actually everyone that I couldn't understand; not just him. All I wanted to do was rest and sleep, and I was getting very angry with myself that whatever was said to me had to be repeated multiple times. I remember watching kids films before bed and being very entertained by them, like a 4-year-old would be. I did not feel in my right mind.
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Autoimmune Encephalitis - Stuart's Story
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.
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Anti-NMDAR Autoimmune Encephalitis - Zoe's Story
Zoe was once a bubbly, playful little girl — full of laughter, curiosity, and light. Then, almost without warning, that light began to flicker. She stopped sleeping. She cried without reason. The words she had learned disappeared. The tiny feet that once ran freely could no longer carry her. The sparkle in her eyes slowly faded.
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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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Herpes Simplex Virus Encephalitis - Aurora's Story
Emma shares her story of daughter, Aurora’s, encephalitis diagnosis. Our daughter was born at 34 weeks premature. I had bleeding and premature rupture of my waters, hence her early birth. Before labour, I had steroids, so she was ready for a premature birth. To this point, there were no concerns. Although she was born 6 […]
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Anti-NMDAR Autoimmune Encephalitis - Emily's story
My story with anti-NMDAR encephalitis begins in the summer of 2024. I had been fortunate enough to travel with my mom and my sister to visit family in England, when I started coming down with flu-like symptoms. At first, I thought very little of it. The constant go-go-go pace and lack of sleep combined with […]
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Infectious Encephalitis - George's Story
In early November 2024, I became unwell with what appeared to be gastro like symptoms. My immune system began fighting the virus but, in doing so, accidentally shut my brain down, causing it to inflame. How it started I battled this at home for a week – high temperatures, extreme fatigue, confusion, and a […]
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Tick-borne encephalitis - Bill's story
Alarming symptoms hit me over a couple of days, a horror show of unbearable headache, fatigue, vision difficulties and loss of balance that put me in hospital where I had multiple intravenous drug infusions, blood tests, scans and a cerebro spinal fluid (CSF) sampling. I somehow failed to absorb the messages about potential outcomes and relaxed in the feeling the hospital staff were doing everything possible to sort me out. I credit this ignorance and confidence with why I didn't express the post-traumatic stress disorder (PTSD) that is not unusual after TBE hospitalisation. That's not to deny this is an emotional journey and I went to some dark places under my own steam.
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Enterovirus Encephalitis - Erin's Story
I had a seizure while in the coma which made things worse. My mum recalls the doctors saying I was "extremely unwell" which she knew from watching medic shows on TV was code for "it's not looking good". When I woke up from my coma I recall saying "where's my husband, I want my husband". No-one else was that important at that moment. I was incredibly distressed and confused. I couldn't move. Couldn't sit up or even roll over in bed. When my husband came and visited me he handed me phone which I immediately dropped and was convinced he'd filled my phone case with bricks.
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Rhombencephalitis - Elis' Story
Eventually, doctors agreed further tests were needed. He underwent an MRI scan, a lumbar puncture, and numerous other investigations. On February 23rd, we finally received the diagnosis: Rhombencephalitis - inflammation of the brain. By that point, our son was critically unwell. He slept almost continuously for three days and had lost both speech and mobility. We were faced with enormous uncertainty and fear, not knowing what the outcome would be.
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Herpes Simplex Virus Encephalitis - Lucy's Story
I sat down and got hit with a horrid sickly feeling right at the pit of my stomach. Everything hit so suddenly when I was in the shower. I felt incredibly dizzy, I tried to shout for help, but nothing came out. My grandad heard heavy, laboured breathing, it was me. My younger sister found me seizing on the shower floor, gasping for air as my right lung had collapsed because my head was directly under the shower head. An ambulance was called, and I was taken to hospital.
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Meningoencephalitis - Cade's Story
In June 2024, Cade fell suddenly and severely ill. He had shown no signs of being unwell until one day, out of nowhere, he started vomiting, developed a headache and fever, and quickly became confused and disoriented. His parents rushed him to hospital, where doctors soon diagnosed him with meningitis. But this was only the beginning.
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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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Herpes Simplex Virus Encephalitis - Daniel's Story
In 2017, I was young, fit, and full of energy. I worked as a primary school teacher and performed on many stages as the singer of a reggae and ska band. Life felt wide open. I had no limitations, no serious illnesses, and creativity flowed easily—writing songs, playing piano, editing videos, building things. Everything seemed to be unfolding exactly as planned, with a lightness I still miss today.
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Autoimmune Anti-NMDAR Encephalitis - Ashley's Story
My battle with Anti-NMDAR encephalitis began in late June 2023, when I was 29. My memories from that time are blurry, something many people with this diagnosis can relate to. It started at work. I was unusually anxious about a presentation and hadn’t slept for nearly 48 hours. As the anxiety escalated over the next […]
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Acute Disseminated Encephalomyelitis (ADEM) - Vittoria's Story
Vittoria was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) in Italy in 2011. On August 5, 2011, aged 42, I felt a sharp pain in my lower right back, but I didn’t worry about it because I thought it was premenstrual pain. On August 7, I suddenly fell for no reason and felt dizzy. On August […]
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VZV Encephalitis - Siw-Iren's Story - English Translation
I was taken directly to the emergency department. I remember being frightened—I understood that this was very serious. I knew I had been right all week! I had meningitis, but no one except my manual therapist had taken me seriously. In the medical notes from the emergency department, it states that I was very confused and restless. Clearly cognitively affected, with expressive aphasia. I remember wanting to call my son, and I tried to ask the person looking after me if they could get my phone from my jacket. All I managed to say was “there, there, there” while pointing at my jacket, repeating my son’s name. It was horrific being unable to speak while partly understanding the seriousness of the situation.
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VZV Encephalitis - Siw-Iren's Story - Norwegian version
Mitt navn er Siw-Iren Høgås, jeg er 50 år og har en sønn på 24. Jeg er utdannet sykepleier fra 1999. I oktober 2017 ble jeg rammet av varicella encephalitt. Har jobbet som leder ved ulike kommunale sykehjem i ca 15 år og vært assisterende avdelingsleder ved medisinsk avdeling i sykehus i 5 år. Jeg […]
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