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.

I was in my first year of university, living at home and studying full-time. I loved it. I’d gone with my best friend, was getting high marks, and felt genuinely excited about my future in policing and criminology.

The first signs

Looking back, I can see the early signs. My handwriting changed. My grades dropped. Lecturers became worried because I was handing in crumpled, handwritten work that “just didn’t sound like me”. I changed how I dressed and did my makeup. My personality shifted too, and I became angrier and more aggressive at home.

I also started “losing time”. I would almost wake up from a daydream and find myself at work, in a lecture, or sitting in a car with no idea how I got there. A tiny part of me knew it wasn’t right, but my brain was wrapped in fog. I just thought, “oh well, carry on”.

Things got worse

One of my last clear memories was sitting in a lecture with my best friend. I suddenly “came to” mid-class, talking but not really understanding myself. I couldn’t retain anything the lecturer said. All I could manage was, “my head hurts, my head hurts, it hurts so much.” Someone gave me an aspirin, and my best friend told me I needed to go home.

She walked me to the train station and sat with me on the train. That’s when the panic kicked in. I couldn’t stay awake, not from tiredness but from something else. My head was pounding and I could hear a horrible fizzing in my ears. The next thing I knew I was in my mum’s car, with no memory of leaving my friend or getting off the train.

The last thing I remember clearly before hospital is sitting in my bedroom, on the phone to the doctor, begging to be seen because, “my brain feels like it’s going to melt out of my ears.” I was terrified, but it felt like only little fragments of “me” were getting through.

At the doctor’s appointment I was told I had tonsillitis, given antibiotics and sent home. I knew something was really wrong, but I couldn’t hold onto that thought long enough to fight for myself. My family later told me my behaviour kept getting worse – I became extremely angry, trashed my room, and seemed like a different person.

One moment really shocked me. Just before my friend took me home from university, 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. Then I lost time again: one moment in the bathroom, the next on the train.

Getting help

A few days after the GP visit, my mum noticed that even our cat, Darcy, was behaving strangely. Darcy is my little shadow and follows me everywhere. She was meowing at my mum in a way that made her think, “something is really wrong.”

My mum came into my bedroom and found me in bed convulsing. I had blood coming from my nose and ears, foam and blood at my mouth, and I was unresponsive. She and her partner called an ambulance.

I have no memory of this, but my mum told me the paramedics arrived quickly and were fantastic. They tried to put in a cannula, but my temperature was dangerously high. My immune system had gone into overdrive and was attacking my brain – it basically thought my brain was the enemy.

In hospital

I don’t remember arriving at hospital. I was taken for scans, lumbar punctures and blood tests. At first there was confusion; different possibilities were mentioned – sepsis, gynaecological issues, even drugs. My mum was adamant that wasn’t right: I don’t drink, I don’t use drugs, and I had been unwell for days.

She stopped a passing doctor in the corridor – who turned out to be a senior neurologist – and begged him to look at me. He took over my care, sent me for a lumbar puncture and other tests, and that’s when meningitis with autoimmune encephalitis (meningoencephalitis) was diagnosed. Treatment started immediately.

I was moved to intensive care, placed on life support and put into a coma. I was on multiple antibiotics, anti-seizure medication and other drugs around the clock. My veins eventually collapsed from the treatment, so I had a PICC line inserted. Ice packs were used to bring my temperature down. At one point my family were told that if it didn’t come down that night, I was unlikely to survive.

I remained in a coma and on life support for a couple of weeks, then drifted in and out of a semi-conscious state for weeks after that.

Waking up

When I finally came round I remember I was paralysed from the neck down. My right arm came back first, numb and heavy like I’d slept on it. My legs didn’t work at all. My family were told I might never walk again and would probably need a wheelchair for life.

I had brain scans, seizure tests, and endless cognitive and memory tests. Because I’m dyslexic, many standard tests didn’t fit how my brain already worked, so the team had to adapt how they assessed me.

The day I count as “waking up”, I was utterly confused but surprisingly calm. I was convinced I was on a photoshoot in the Sahara Desert with Hugh Jackman and Gordon Ramsay, and that my brother needed to take me home. I grabbed my phone with my half-working arm and called him. He gently told me I was in hospital and needed to go back to sleep – it was the middle of the night.

I don’t remember feeling scared for myself; I think I was on enough medication to feel strangely relaxed. I couldn’t grasp how serious things had been. I mostly felt confused about why everyone looked so worried. Doctors kept telling me I’d been very poorly, but I couldn’t connect that to myself.

Understanding what happened

It wasn’t until I overheard my consultant explaining my case to medical students that I realised how close to dying I’d come. I got hold of my iPad and searched “encephalitis”. That’s when I first found Encephalitis International. Their website and YouTube videos explained, clearly and simply, what had happened to me.

Those resources were a lifeline. For the first time, I understood my diagnosis. They gave me language for what I’d been through. A few days later I showed my family the same videos, because they were terrified and overwhelmed too. It helped all of us.

Recovery and rehabilitation

Rehabilitation was hard. I had intensive physio to relearn how to sit, stand and walk. I did memory tests and cognitive exercises every day. I was exhausted, but determined, and surrounded by family, friends and staff who rooted for me at every tiny milestone.

Life afterwards

It’s been several years now, though it doesn’t always feel that long. Encephalitis has left its mark in lots of ways.

I have large gaps in my memory. There are chunks of my life that are simply gone. Sometimes people stop me in the street and say we went to school together, and I have no idea who they are. That can be distressing, and it’s why I always tell people: please don’t keep asking someone with a brain injury, “Do you remember?” If we don’t, we genuinely can’t, and it’s not from a lack of trying.

I live with chronic migraines and cluster headaches, muscle weakness and numbness, especially in my left leg, and severe fatigue. Sometimes I use a walking stick – and because I’m in my 20s, I made sure it’s a very stylish one. Disability aids can be fabulous.

My immune system had to be heavily suppressed, so ordinary infections can now make me very ill. A simple cold or flu can knock me out for weeks. I also have lingering neurological quirks: when my brain is very tired, cold water tastes like chocolate milk, and pork tastes like pennies – that’s been true ever since I woke up from the coma.

Day to day, I manage fatigue by pacing, planning rest and leaning on the people around me. I use resources from Encephalitis International to help my employer understand my needs and why I might sometimes act or appear a bit different. My workplace has been brilliant with reasonable adjustments.

What I carry with me

There is grief, of course. I don’t remember the worst bits, but my family does, and in many ways I feel worse for them than for myself. There are no photos of me on life support or at my worst; I only know what I looked like from their expressions and the way they speak about it. My mum, brother, partner and friends were the ones washing my hair, bringing soft pyjamas, finding food that tasted normal and sitting by my bed when I couldn’t respond. They are the brave ones.

At the same time, I choose to focus on what encephalitis has given me as well as what it’s taken. I slowed my life down and changed direction a little, but every cloud has a silver lining.

Where I am now

Today, I am the youngest operational policing lecturer in the UK. I teach future police officers about criminology, vulnerability and empathy, drawing on my lived experience as someone with a brain injury and hidden disabilities. I’m studying criminology at master’s level and working towards a PhD. I still have big ambitions – they just look a bit different now.

I have a wonderful fiancé who understands me and supports Encephalitis International. My friends carry my oxygen tank on day trips and know the signs that I’m getting too tired. My hero cat, Darcy, still has daily naps with me and was, in many ways, the first to sense something was terribly wrong. I live life more slowly now – although some would say still too fast – but it is full, important and happy.

If my story helps even one person feel less alone, or helps one family push for answers sooner, then sharing it will have been worth it.

 

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Story published June 2026