Amy tells her lived experience of meningoencephalitis which started in 2018.

In October 2018, when my second daughter was 6 months old, I started experiencing severe food poisoning symptoms – dizziness, extreme fatigue, vomiting and headaches. Over the next couple of days these symptoms became worse and I could not seem to stop vomiting, I couldn’t care for myself or my kids properly. I ended up being driven to A&E by my husband with an extreme headache and aversion to light. The doctor who saw me that day said “I think you think you’ve got meningitis, this is probably just flu” – these words have stuck with me ever since. As a result of this diagnosis, I was sent home and advised to rest and hydrate but this became impossible with the amount of vomiting that ensued. I went back to A&E the next day to be seen by a different doctor. Being admitted this time around is one of the last clear things that I remember and the sense of relief at finally being under the care of doctors washed over me. After that, my memories are scattered – I remember the first lumbar puncture, various family members being at my bedside, and I remember lying upside down on a trolley when the lights of the ward were too bright to have facing me, even with my eyes closed.

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.

I was in hospital for a month and was discharged just before my eldest daughter’s 3rd birthday having made a “full recovery” . I was given no information about long-term side effects and no follow-up appointments were scheduled. I dove head-first back into life as a mum and teacher.

Over the next few years, as the world dealt with the Covid-19 pandemic, I left my teaching job due to stress and I experienced significant anxiety, depression and sensory differences, which I mainly attributed to the unprecedented times through which we were all living. When I returned to work in 2021 I realised it was more – I suffered from fatigue and mood swings, a lack of executive function, and none of the other symptoms had gone away. I googled the after-effects of meningoencephalitis and was shocked to see everything I was experiencing listed in front of me. I felt an enormous sense of anger and loss – especially because I had never been told this could happen when I left the hospital. One GP at my local practice was amazingly supportive and put in a referral to neurology to try and get some answers – it still took 6 years from discharge from hospital to finally get a diagnosis of  acquired brain injury (ABI).

The post-hospital journey has been incredibly emotional and frustrating. I was required to self-fund cognitive behavioural therapy. To satisfy that I had ‘been down the mental health pathway’, I waited months for a psychiatry evaluation. I had to repeatedly advocate for myself, sometimes against staff at my own GP’s practice that this was more than just a need for antidepressants. I now experience significant medical anxiety, which links directly back to the experience of being turned away from A&E in the first place. My personal relationships have also suffered – I feel like family members have found it difficult to navigate my changes in personality and I have been told that I am ‘cold’ and ‘different’ since my illness. I find it very hard to ask for help and I know I am not alone in feeling the frustrations of having an invisible disability – it can seem like nobody acknowledges the difficulties of brain injury unless I explicitly raise the subject. It can feel very isolating.

Moving forward, I am so grateful to be in the position I am in as a survivor of meningoencephalitis with very few physical side effects; I have returned to work in education four days a week (as a teaching assistant rather than a teacher) and I absolutely love my job. My workplace are very supportive of my needs, and I am working on routines and strategies to help me with day to day life – especially the challenges of parenting two small children. Encephalitis International have helped so much – Jon on the helpline was one of the first people who validated my experiences and encouraged me to seek a neurology appointment. The night before I saw the neurologist he stayed on the phone with me and helped me to write down my thoughts and concerns and I am so grateful for his support. I have found the online group chats to be fantastically supportive and an amazing place to connect with other people about our shared experiences. I feel so lucky that there are so many resources out there which make me feel less alone and which help me to move forward with an ABI – the Encephalitis Podcast has some amazing episodes (especially the one about mental health) and I listen to the Brain or Shine podcast regularly.

If I could offer any advice to other people in the same situation, I would say keep going – you are entitled to information from specialists and you are entitled to ask for the help you need. If you can, spend as much time as possible outside – walking, wide swimming and simple activities outdoors do so much for my mental health and emotional regulation. To family members, friends and caregivers I would say ask your loved one about their experiences – when people ignore it or pretend it never happened, it can feel very invalidating.

 

Story published March 2025

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