Viral Encephalitis Lived Experience – Paula’s Story

This is Paula’s Viral Encephalitis Lived Experience. She discusses how encephalitis affected her childhood and how she is doing now.

Childhood

My dad has informed me that it was just after my first birthday party when I became ill. I was shaking, vomiting, I wasn’t taking my bottle and had a high temperature and flu-like symptoms, so my mum called the doctor and I was rushed to hospital. I was hospitalised for about 6 weeks while I underwent various tests and I was diagnosed with viral encephalitis and status epilepticus at the same time – I was put on antibiotics and 3 anti-epilepsy medications.

My parents had never heard of encephalitis before, until after my diagnosis. The doctors informed my parents that it might leave a scar on my brain, but there was no mention of any long-term effects, after-effects or brain injury etc. I didn’t know about any of this, my earliest memories are from when I was two or three like the average person.

Encephalitis was never mentioned again, so my parents thought it was another childhood illness at the time, all they were told was “she has got encephalitis, she will get over it” and that was it!

When I was discharged with my anti-epilepsy medications I carried on like a normal toddler, except that anytime I picked up a virus or infection it triggered my epilepsy. I was always rushed to hospital, this went on until I was ten. Meanwhile I started mainstream school. When I was five, I fell off a climbing frame, hit my head and was rushed into hospital and hospitalised for a fortnight. During this time, I was having repeated convulsive seizures for well over a week. The paediatrician diagnosed me with a head injury. My mum informed me that the paediatrician recommended I go to a special school, so I changed schools. I enjoyed both schools and was able to do mainstream work. The third school I went to was for special needs, they had a nurse there, and the other children had behavioural problems and various disabilities. I was put in the same class as them, I had to do the same work as them which to me felt like work I had been given when I was in nursery. I absolutely hated it there, I used to dread going in and I would sooner stay off than be bullied daily but, it was the law. I couldn’t wait to get away from that school quick enough, but apparently the education authorities said that I had to stay there.

I was a naturally very quiet, paranoid person from the age of about three, just after I first started talking. My paranoid thoughts stemmed from there, I hated what I then thought was my horrible voice and automatically feared that everyone else would hate it, and that I would get bullied as a result of avoiding speaking – because at the time this was my worst fear. I always dreaded speaking to anyone apart from my parents and my Nan, nobody else. It was absolutely horrible and I was never taken seriously because nobody knew why, or even bothered to ask me what my intrusive thoughts were. My OCD may have stemmed from there. I appeared shy, though I wasn’t, it was more paranoia.

I remember from the age of five I couldn’t stand the feel of tissues/kitchen roll and if anyone came near me with one, I used to escape – I felt compelled to wash that horrible sensation away and nobody could make me out, so that became my earliest obsession.

Teenage years

After changing my anti-seizure medication, for which I had to go in hospital again, I went one year seizure free, then two years later I had one seizure at age 13. Finally, after another four years free, I had my last seizure at age 18 – but I was only in overnight that time, and that was it! We expected more to come, but after ten years, we knew that was “freedom at last” and now I’m 28 years free from them.

This was a very worrying time for my parents. It had a bad effect on my mum when I first became an adult.  I never thought about predicting the foreseeable future, because all I wanted to do was “carry on where I left off and look forward to that”. I knew that thinking the other way would get me nowhere. The only help my mum had was from my dad, and she used to say to me “your dad is more laid back than me, he doesn’t worry like me”. My dad said he was worried. His motto was “he had to keep his head above water” to help my mum.

Meanwhile, I went to a private special needs boarding school. They had separate classes there for different groups of needs, and I was in the mainstream classes (that’s what I liked about this school). I used to finish my work after everyone else and took it home to finish it off “in my own time”. I made some friends there.

I was diagnosed with anxiety when I was 13, as I was having panic attacks. This was when my Obsessive-Compulsive Disorder (OCD) started to become noticeable to my parents, and I was suffering undiagnosed depression. I wasn’t diagnosed with Clinical Depression until later, in my adulthood.

This was why I didn’t feel like speaking on top of my paranoid thoughts. I used to be singled out a lot, and when I did speak, I sometimes couldn’t form a full sentence, nobody knew why but it used to come out in bits, here and there. Trying to get my words out, they just wouldn’t come to me, or something impulsive used to come out instead. People used to say “stop acting as though you are deaf and dumb when you are not”. I was so infuriated by such comments and their lack of knowledge/understanding about what I was “suffering from”. I told my mum how I felt. My dad was unaware that I was living in fear. Consequently, I always feared people thinking I was stupid because they didn’t understand my slow processing speed. My slow information processing speed has always been a major problem for me. I have had so many people say I had a big lack of understanding (though this wasn’t true).

I took longer to read and always struggled to follow a plot on TV. It would take me much longer to pick up the characters in a TV show, so we used to record them and I would watch them alone. I’m now aware that I couldn’t remember the characters, I wish I’d have known this at the time.

All I needed was a bit of quiet to concentrate because I always had a “poor attention span” too. Nobody could make me out or knew what my problems were, these were never discussed with any professionals.

I have never been able to keep up with people who talk too fast. I have always required “extra thinking time” in conversations – something I never had until a couple of years ago. I have to ask more or less everyone I speak to, to “slow down” for me, I will say “sorry I can’t keep up with you” and/or “wait a minute”.

Most people don’t in daily life, they often speak faster and that causes me anxiety/panic attacks.

Adulthood and present day

When I left school, I went to a special needs college. It was quite difficult mixing with others who had behavioural problems and various disabilities. I have never been judgemental, but others always judged me negatively. I couldn’t wait to leave there because I was bullied terribly daily, but I did pass some exams there.

I was 18 when I was diagnosed with profound OCD and it deteriorated from there to the point where I was bedridden with an eye mask on when I was 20. I was then referred to an OCD unit in London as an inpatient. I was eventually admitted when I was 21. It was them who gave me “graduated” CBT tailored to OCD called Exposure and Response Prevention and OT together, including role plays I found really helpful, and assertiveness training which wasn’t easy but very beneficial in the long run.

Graduated CBT was remarkable, but there have never been follow-ups, I relapsed four out of five times I was discharged. I was also diagnosed with clinical depression and Intermittent Explosive Disorder.

Over the last 20 years I have had problems with multi-tasking, anger and aggression although the latter has improved a lot now. During this time I have lived with profound OCD, and I’m still struggling to live with it.

My insight and reflection are much better than they used to be. I can read facial expressions and recognise social cues better now, but this takes a few extra minutes rather than instantly. I also understand jokes much better, but again it takes about 10 minutes or a couple of guesses and after that I usually get it right. It takes “that long to register” with me which is why I sometimes ask people to “please wait a minute” during conversations, and if people interrupt, I will lose what I was going to say which is very frustrating and overwhelming.

I used to say things that there were “out of character” or things that were “uncharacteristic of me” more often in the past. I’m still working on “stopping to think twice as hard” before I speak to this day. I’m making slow but steady progress. I have always been very patient with myself, no matter how long it takes to do things to improve further. It’s knowing I need to allow myself that extra time and ensure I space my time out. I sometimes say things that don’t make sense or back to front. I sometimes find social situations very overwhelming, especially if there are people talking over me, or about several different topics at once. I stop and take deep breaths these days, that along with asking people to slow down for me because it would otherwise cause me to have panic attacks. I often have to rephrase/reword something three or four different times to get my message across to people and stick to the topic because my mind does wander off so I try to “pay attention” if there’s too much on my mind. I’m still trying and persevering with lots of things, and others I already have dealt with (some aspects of language, but not all). I’m still training myself to think more often first and document what I’m going to say, how to say it, what to anticipate, when, where etc. I have been able to form a full sentence for about 20 years.

Because I had encephalitis when I was so young, I have lived with an undiagnosed brain injury ever since. However, I was officially diagnosed with a brain injury in 2021, and that was with the help of Encephalitis International. I first contacted the Encephalitis International helpline in 2018 because I wanted to know if my profound OCD had anything to do with encephalitis and nobody ever knew why I was prone to relapse, because my OCD has been diagnosed as refractory – peone to relapse.

My worst fears are bins/litter and I avoid anything/anyone who comes into contact with them. Nobody except one family member is allowed in my home and he has to shower, change his clothes before he comes (and whenever I stay with him) he does this, plus disinfecting everywhere and everything he has used outside before he touches any of my belongings. He also has to take my coat and handbag to the dry cleaners. I would have to do the same if it was urgent for me to go somewhere, and it takes up the full day and into the next day – I end up having meals late evening. I go to bed when most people are getting up, so I get up around lunch time and have breakfast when most people have had lunch.

I’m able to live alone. I’m housebound and a family member does my shopping (that gets disinfected before I receive it), and I can’t use a bin.

I joined Encephalitis International in 2019 and later I became a volunteer for them in 2020, and I enjoyed every aspect of it. It was the closest I have ever come to having a job.

I’ve found music a good motivator – it picks me up whenever I’m depressed, and helping my dad with the gardening does the same.

My advice to anyone who has had encephalitis:

• Be patient with yourself
• Try to live in the present
• Make the most of what you have got
• Stay positive
• Find yourself a hobby
• Recovery is far from easy, and it is different for everyone
• Give yourself extra time for things
• Go at your own pace.

For more viral encephalitis lived experience stories, please click here.

For more information on viral encephalitis, please click here.