I thought it was just the flu, but when I left for a summer holiday with my partner, things took a turn for the worse.

In September of 2025, I was about to go to Greece with my boyfriend, and I’d found out my passport had expired. We stayed with his grandparents near where you could get last minute passports, and within that time I had caught a cold. Usually, I never really got sick and even if I did it was never that bad. I narrowed it down to a very bad viral infection and it was gone within a couple of days after some medication and rest. On the 16th of September, we set out for Rhodes, and had a really lovely holiday- until everything started going wrong.

Holiday

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.

Getting to the airport to leave, this is when we knew something was off. I was very disorientated and confused by all the loud noises and the intercom of announcements. I sat on the plane for 3 hours just staring at the seat in front of me, completely out of it. When I arrived home, things seemed normal and I asked my boyfriend of the time to just keep it on the downlow as I didn’t want to concern my parents.

Back Home

About a week later, I returned to my job as a waitress at my local pub. My manager was doing a wine quiz for us to recap our memory. This is when I realised it wasn’t just my boyfriend that confused me. I couldn’t remember any of the knowledge I’d learned from wine training and could not get my head around what any of them were talking about. luckily, I worked with my partner, and he could see I was getting very stressed out about this. I went to serve a table and asked them the same questions multiple times and was talking to them about things they didn’t even ask about. I honestly thought I was going mad. Thankfully, I hadn’t been given that many shifts that week, so I didn’t have to worry about this being picked up on. I got home that night and was suffering quite badly from neck and back pain.

I went for a meal with my partner’s family and was practically falling asleep at the table. He had to speak for me and explain to them that I just wasn’t right. After we got home, I remember lying in bed while he sat with me and I honestly thought I was going to die. I’d researched my symptoms and because encephalitis is so unknown I thought I had aphasia. I was crying and coming to terms with the fact that I thought this was the end for me, and I fell asleep. All I wanted to do all the time was endlessly sleep. Thankfully, he had called my mum to come and get me from his house, and she kept a close eye over the next couple of weeks.

Every noise was louder to me than it was, I couldn’t count to 10 or recite my ABC’s, everything was completely alien to me now. I felt like a child unable to cope by themselves. My paranoia was out of control, and I heard voices in my head that kept me from sleeping at night. I finally had my first seizure. I was in a room of my house, and I said to my partner that I felt sick; from there everything went black. I woke up to being surrounded by first aiders and an ambulance downstairs, and I’d bitten and cut my tongue so hard during the seizure I couldn’t speak. I was extremely confused as I couldn’t understand what was happening. I was in the hospital for a couple of hours but then I was let go after some tests.

On the 12th October, I had a GP appointment. This was because I have an iron deficiency and I needed to get a test, unrelated to what was going on in my head. Before leaving, I took a knife and cut into the clothes I was wearing, completely out of my control. This was very terrifying because I didn’t want to harm myself or others. I got changed and headed to the doctor, where I sat down and passed out in her chair. Now I know, this was an absent seizure but to me felt like I just fell asleep. My GP advised my mum to take me straight to hospital.

The Hospital

We arrived at the hospital and as soon as I stepped in the emergency department, I started screaming uncontrollably and had another seizure. The nurses calmed me down and I had to wait hours to get a bed. They mistook my illness for psychosis and were going to send me to the psychiatric building instead. I told them I was hearing voices and my mum explained how I was acting like a child and couldn’t talk properly or process information. This night was the worst.

I was given a bed and after being questioned for hours, they just thought I was a moody teenager who was rude to everyone. It was like I had an alter ego where my brain was corrupted and an evil side came out. I thought I was on a reality show, or I was being pranked for some reason and that none of it was actually real. I went mad and started throwing things and becoming very violent to the point they had to sedate me. I have no recollection of this night at all. Thankfully, a nurse that worked there knew me from when I was younger and knew that this was not truly who I was and that there was something very wrong, beyond a mental disorder.

After being admitted into the hospital I was in 4 rooms over the course of my time there. The first room was quite loud, which was not helpful to someone with sound sensitivity. This is where I had my lumbar puncture. The neurologists started doing many tests on me and decided I shouldn’t be in a public room with other people as I was sensitive to everything around me. I got moved into a private room. I had an MRI and IV’s. I was on a 5-day drip into my arm which would reduce any inflammation in my brain. The doctors sort of had an idea of what was going on at this point but couldn’t find a cause as my test results were basically normal. They sent blood tests to Oxford but unfortunately these got lost so a diagnosis was delayed. The only night I actually remember being in this room was when I woke up at night and an impulse told me to rip the canula out of my arm and I just stood there bleeding, helpless. It is unfortunate that is all I remember, as my parents told me nice stories about playing games together and things. I like to hold onto that memory instead.

Diagnosis

In my final room, everything started making sense. I had an EEG, an ECG, more MRI’s, an ultrasound on my womb, and I was put onto steroids. I met with lots of doctors in different areas, of course I did not understand anything they were saying but they were a huge help. My neurologist diagnosed me with autoimmune encephalitis and deducted that my immune system had simply attacked itself and there’s nothing I could’ve done to cause it or prevent it. The only day I remember parts of from was this room when I had 3 seizures pretty much simultaneously and my heart rate was through the roof for hours following. Apart from that, my time there was a complete blur. I started being able to talk again, and after barely eating a thing for 2 weeks, I was being taught how to eat again. My mum had to teach me how to chew, how to dress myself, shower, how to walk again, how to write. Learning how to simply live again is something I wouldn’t wish on anyone. I was obsessed with watching the clock in my room and timings of when things were happening. I still did not understand what was happening to me. I was given 40mg of steroids and other various drugs to go alongside them every day, which I thought were memory loss drugs tricking me into staying in the hospital for what felt like months. The day I was discharged from the hospital I was given a final test. I was asked to do maths, games, drawing, memory challenges and other various things to make sure I was fit to leave. Finally, I was out and the swelling in my brain had gone down and they had found the cause to all of this. I was never insane, I never went mad, my brain was just on fire. Looking back to the moment in bed where I made peace with the fact I thought I was dying, I’ve never been so grateful to be ok.

Recovery

I’d battled with my mental health relating to eating disorders for a long time before this illness, and had been in the hospital for it prior, but lost a lot of weight in this time. This was obviously not good, because if anyone who has been on a high dose of steroids knows, you gain a lot of water retention back and feel very bloated all the time. I’ve been having a very big mental battle with myself about this, but I just tell myself that it’s not my fault and my body is simply protecting itself. I was quite disorientated at home with day-to-day life, feeling a lot of pressure to relax and not worry about everything. My parents work full time so creating a routine for myself was very important. Luckily, I had a great support system around me. I hadn’t properly processed what had happened to me yet, so I had a lot of questions. I got back in contact with my best friends which felt amazing, but sadly me and my boyfriend ended things. I struggle a lot now with feelings especially in a relationship, and I was emotionally very absent from this one as a lot had gone on and the drugs I was taking made me feel very different towards him. Recovery on my own though had been very eye opening. I haven’t had a proper night of sleep in months, and I still hallucinate sometimes as I’m falling asleep, also struggling with horrible nightmares as a side effect of steroids. I’ve returned to speaking normally and keeping up with my appearance, and now I’m set to finish my steroids at the end of May 2026. I am back at my job where I am supported, and going out with my friends like a normal 18-year-old girl. I struggle with my long-term memory and health anxiety now quite a lot, and it is sad that I can’t remember much about life before I got sick, but it is always nice when people tell me stories about my life and I can relive them as if they were new. There are days where I do feel depressed about the situation, but I have started relearning my favourite things again; guitar, painting, singing, and being creative. this really helps calm me down. I am not the same person as I was but am starting to get back to normality.

A piece of advice I’d give to anyone recovering from this illness; you’re not crazy, you are seen and supported. Even though it is a rare condition, there are so many people you can speak to and share your story with. If you look different coming out of it, you are still the amazing person you once were, you just have battle scars to prove you got through it. Keep working on things you struggle with, because I promise they get better in time- and finally, don’t be afraid to reach out or share if you think something is wrong with you or someone you know.

If you would like support for encephalitis please contact our helpline.

Story published June 2026