We asked our volunteers for their tips on looking after your mental health following encephalitis. Watch and read what they said:

Hannah

Encephalitis has hugely affected my mental health and that’s ok. Because I was initially misdiagnosed with a mental health condition before being correctly diagnosed with AE, I found it hard to reach out to mental health services as a result of the trauma the misdiagnosis caused me. However, I recognised I needed support and that’s completely ok. It took me awhile to accept help but I’m so glad I did. 

There’s some simple yet sometimes hard things I do that help me feel better such as showering, making my bed or treating myself to my favourite food. Something I’ve invested in the past two years is therapy which I’ve found incredibly helpful. I see a therapist who has experience with people who have brain injuries. I found my therapist through headway. 

My advice would be to take one day at a time, if that’s too much then one hour at a time and congratulate yourself for getting through each task and each day. Even the difficult days, it’s important to recognise you faced it! Reach out to the encephalitis society for support and join the virtual gatherings, it helped me feel less alone and supported by everyone there; like I had a team cheering me on! 

Elizabeth

My mental health has been affected by encephalitis. At first, when I was seriously ill in hospital, I believed I’d been captured by terrorists disguised as nurses. So my main feelings were fear, and increasing distress as I realised that I had been mistaken in that belief - but was still unable to remember even the names of my grandchildren. So in a funny, mixed-up way, the clearer my mind has become, the more I have realised the severity of the illness and the more frustrated I have become about memory loss, poor physical balance, difficulty with reading, inability to drive etc.

One simple trick I have developed that definitely makes me feel better on a day-to-day basis: as my confidence and mobility has improved so I can bus into town alone, I treat myself to a coffee (and sometimes cake!) in a cafe, watching other people’s lives around me (and sometimes enjoying snatches of conversation, nothing to do with me but fun to earwig!). 

A second trick: as I have begun to read again, is learning that I no longer need to read deep or distressing literature if I don’t feel up to it. So, I’ve joined a book group but don’t read every book; I have a house full of ‘decent’ books but my brain sometimes enjoys light-hearted, happy-endings, easy-to-read stories- so I spend time in pleasure not duty! 

There are advantages in having survived a serious illness and coping with brain injuries, and feeling entitled to occasional cafe and book treats are definitely important ways of me getting through the tough times. My tip for others would be neither cafe nor book treats - but simply to find a few things that bring fun into your life. 

Juliana

My mental health was greatly affected after encephalitis. I was 14 years old when I returned home from the hospital and was still learning to adapt to this new life and the long road to recovery. Once I started my second year of high school at 15, I started feeling very unwell. I felt like there was no purpose in my life anymore and that nothing made sense. I skipped class almost every day to hide in bed, I lost touch with all my friends and I refused to leave home. My mom knew something was very wrong, so she took me to my Psychiatrist and a therapist. I was told I was depressed and very anxious, which tends to be very common after going through such a traumatic event like this one.

During my battle with depression, I was not aware that I was mentally unwell. I did not understand it, therefore, I did not seek help. Thankfully, I had my mom to force me to go to these doctor appointments so I would get well somehow. Our last resource was seeing a Neuropsychologist that was highly recommended by a family friend. I started seeing her twice a week for a couple of months and slowly but surely, I started noticing a real progression in my mental state. I learned all about Cognitive behavioral therapy and meditation. Once I finished all the sessions, I was a new person. I got into contact with friends, went back to school, and felt somewhat like myself again. Neuropsychology and the mindfulness practices that came with it taught me to accept what I had gone through and for that, I am forever grateful.

My biggest tip for coping with your battles with mental health is to be open to seeking help. It was very hard for me to do this, and if it weren't for my amazing support system, I don't know where I would be right now. Don't shame yourself for struggling, instead embrace the journey and seek help from others. I promise that we are all in this together and that there truly is a light at the end of the tunnel. It won't get better overnight, but if you truly put in the work, you will see positive changes. Self-acceptance and awareness lead to growth and a great outcome. Stay strong, you got this!

Aliya

My mental health was deeply affected by encephalitis. I remember coming out of the coma, seeing my friends and family truly for the first time, and realizing it wasn’t over yet. I remember moving out of the ICU and realizing that it wasn’t over yet. I remember how quickly my body was positively responding to certain treatments and realizing it wasn’t over yet. I remember realizing even when I do get to go home, it meant starting all over.

Luckily, with this diagnosis, what did return to me was my memory of being a psychology student and the passion that came with it (I know, the irony). The doctors showed me my MRIs and I would point out the different parts of the brain. They taught me and ignited that curiosity that I had before. They spoke to me as if I wasn’t sick, and for some time I would forget that I was. I can’t help but also point out the love I received from my friends and family as they surrounded me constantly. They made me laugh as much as I used to before, and helped dissipate any pain that lingered throughout the whole journey even to this day.

Rediscovering my passions and surrounding myself by the people I love greatly improved my mental health. I truly believe that these steps can help improve anyone’s state of mental health after a traumatic illness such as encephalitis. And one more thing: don’t stay quiet. I think being quiet is one of the easiest things to do after realizing what had happened, and speaking up about how you feel mentally is the hardest first step towards recovery. Start small. Talk to yourself.

As a psychology student, I knew talking is the first step to believing. I would repeat to myself in the hospital “you’re okay, you’re okay, you’re okay” or “it’ll be okay, it’ll be okay, it’ll be okay”. And once you find that courage, tell someone when you’re not okay. Asking for help is always the strongest thing you can do, whether it be for making your first step, saying your first word, swallowing your first solid piece of food, or finding that spark again. Make some sound. 

Yvonne

I was most depressed during my first two years of recovery, when I became well enough to realise how often I slept and how poor my memory was. Talking in a noisy  room full of people was an impossible ordeal,  and I felt I’d lost my independence.

The loving support and understanding  of my close family and friends was vital, especially in the humiliating moments when I flooded our house after forgetting to turn taps off, or when I broke down in tears in my friend’s house after going to the toilet, as I couldn’t remember  where I was. 

My consultant told us not to give up hope, as the brain takes at least 2 years to find new pathways around the damage caused by the encephalitis, and that it was possible for my memory to improve. He advised me to try and read and write every day to exercise my brain, so I began reading short  online newspaper articles and responding in the comment boxes.  Doing this lifted my spirits as I found I could do this by myself, and it made me feel like my opinion still mattered. 

Paula

My mental health has been extremely affected after encephalitis.

I have had a lot of CBT, in the past, I do a lot of deep breathing exercises, stop and think the situation through first before responding in a negative way.  I try to live in the moment and all those things work.

Identify what situation is causing you anxiety depression, obsessive or intrusive thoughts, or maybe try to find some sort of anger management. 

I still have absolutely no idea how to express it without being verbally and/or physically aggressive and it was only to my parents I used to hit them, throw things etc, but I have been known to be verbally aggressive and it's difficult trying to keep it to myself because that fuels the vicious cycle. I hope to learn new ways of expressing my anger because nobody ever mentioned it to me before.

I have learnt to leave the situation and return later when calmer but I'm never calmer later unless I sleep it off. I think that listening to relaxing music or singing can be therapeutic, or even as a distraction.

Helen

In my early days, after losing contact with friends, I searched 'how to meet people in London' online and found the MEETUP website...it was definitely a help.  There’s all sorts of events on there...sports, cinema trips, walks, coffees...loads! I went to various. I found my local Headway on there...people should search for their local one. It’s a good way to meet more people with brain injury in their local area. 😊