By Alina Ellerington and reviewed by Dr Ava Easton, Encephalitis Society and Dr Thomas Pollak, King’s College London

What is mental health?

We all have mental health, in the same way that everyone has physical health. As our physical health, our mental health often fluctuates or changes too. Mental health refers to our psychological, emotional and social wellbeing. When people experience a period of poor mental health, the way they feel, act and think can be affected.  Many people have mental health concerns from time to time, but when these are more frequent, or there all the time, and affect the way we function in our daily lives, then mental health concerns can become mental illnesses.

The types of mental health problems that can occur vary widely among people and different types of encephalitis. They can include mood changes, sleep problems, anxiety, unexpected crying or laughter, aggression, anger, paranoia, depression, hallucinations, personality changes, problems with alcohol or drugs, or eating problems. Some of the mental health problems can be even more severe with people exhibiting suicidal thoughts or even suicide attempts. Mental health problems can be confusing and overwhelming for both the individual and for their family and friends.

How does encephalitis affect mental health?

Depending on the type of encephalitis, some people may experience mental health problems as their initial symptom doing the acute phase. This can make establishing a diagnosis of encephalitis very challenging and can lead to a delay in diagnosis and treatment.

Encephalitis is also a risk factor in developing poor mental health and/or a mental illness after the acute disease. Firstly, encephalitis can affect mental health by disturbing the brain’s structure or its function (the way it works). This can change the way that someone perceives or understands the world or the people around them, or how they regulate their own emotions or behaviour. Secondly, after having had encephalitis people can face significant challenges which may also affect their mental health. The psychological impact of experiencing a life-threatening illness, the loss of abilities (cognitive, emotional and/or physical) because of the subsequent acquired brain injury, and the loss of an old way of life can sometimes be devastating.

Managing mental health problems/illnesses

During the acute phase of the illness, the treatment aimed at the cause of encephalitis (e.g., immunotherapies for autoimmune encephalitis) can help greatly managing the mental health symptoms. In addition, specific symptomatic treatment for those problems is often needed too, and this can include sedating medications to help calm anxiety, agitation or even psychosis.

People who are experiencing mental health problems/illness after the acute stage of encephalitis should speak to their family doctor, or their current neurologist. They can refer you to a neuropsychologist, neuropsychiatrist, mental health team, or another service or an organisation which can help.

There is lots of help available for mental health issues and it is important to remember that most mental health problems are highly treatable. Treatment for mental health illness can include therapies such as cognitive behavioural therapy, other psychotherapies, and neuropsychology therapies and/or medication.

It is very important that people seek help from family, friends and professionals. Talking to teachers, school nurses or a counsellor can also help.

Mental health problems cannot always be seen – and in fact many people experiencing mental health problems might feel like talking less than usual. Family members/friends/ school/employees should pay attention to signs of mental health issues such as changes in appetite and sleep patterns, changes in mood, withdrawal from activities and friends, problems with alcohol and drug use.

Looking after your mental health during recovery from encephalitis

Recovering from encephalitis can involve coming to terms with new ways of doing things, how that may change how you feel about yourself and the emotional impacts that may bring. It is important to learn about the types of changes that take place, why these happen, and ways to manage them.

People are different, and so are their journeys through encephalitis: some are smooth, others are more challenging.  There isn’t a pattern that fits everyone’s experience. People will want, or need, support at different times and in different ways. It is good to know that you are not alone on this journey. We are aware of amazing stories of encephalitis and many inspirational people who went through this experience. Whilst trying to make sense of what has happened to you, you need to surround yourself with people and things that can help and make you feel good. Sometimes when you are experiencing mental health problems it can feel that things will never get better, but we can assure you that with the right support things CAN get better.

Below are some suggestions of ways to support and maintain your wellbeing:

• Manage stress by learning to recognise stress triggers and taking preventative measures to minimise it (e.g., avoid doing two things at once).
• Manage fatigue by making sure you take regular breaks during the day and have a good quality sleep at night.
• Try to talk to others about your feelings – both the good and the bad.
• Do something to help you relax and bring about calmness every day (e.g., keep a diary, listen to music) – you could even schedule this in for a regular time each day.
• Connect with others with similar experiences to help feel understood, validate feelings and reduce isolation (e.g., find a support group).
• Find a hobby or become a volunteer.
• Be active (if possible), even if you do only a gentle exercise (e.g., walk).
• Spend time outside doing something you enjoy – the latest research shows that exposure to nature can have very positive effects on mental wellbeing.
• Eat healthy food that you enjoy and drink plenty of water.
• Tackle other difficulties left by encephalitis (e.g., finding ways to cope with memory problems).
• Practice relaxation techniques (e.g., mindfulness and/or meditation).

How can the Encephalitis Society help you?

The Encephalitis Society has a wealth of information and support to help people who have been affected by encephalitis worldwide. Below are some of the ways our support service can help you:

• Contact the support team - available on telephone, email and online chat
• Opportunities to connect with other people with similar experiences. Find out more
• Various information resources on our website or YouTube Channel 
• A comprehensive guide on After-effects, recovery and rehabilitation after encephalitis can be downloaded from our website or requested from our Support Service.

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FS037V1 Mental health and encephalitis

Date created: January 2023; Review date: January 2026

Disclaimer: We try to ensure that the information is easy to understand, accurate and up-to-date as possible. If you would like more information on the source material and references the author used to write this document please contact the Encephalitis Society. None of the authors of the above document has declared any conflict of interest, which may arise from being named as an author of this document.