This paper was prepared by  the Encephalitis Society with advice from Dr Huw Williams Clinical Neuropsychologist  Lecturer in Clinical Psychology  (University of Exeter)

Our emotions respond very quickly to circumstances and/or events around us.  We learn as teenagers, and continually as adults, to hold down our immediate strong emotional responses until our more logical understanding arises to determine our behaviour.  For some of us who have had encephalitis those logical thoughts take much longer to progress through the brain to influence our actions and so our emotions may influence our behaviour in a much stronger way than in an average person.  For others, though, emotions themselves may be slower to respond.

Emotions and the expression of emotion are not only affected directly by the brain injury.  Some of the changes in emotion that a person with encephalitis will experience are simply be normal response to the many losses that accompany the experience of having encephalitis.  For the individual, their family, friends and professionals working with them, it is not always easy to tease out which emotional changes are directly caused by damage to the emotion centres in the brain and which are the person's reaction to the situation they may find themselves in as a result of the illness.

Encephalitis, like other types of brain injury, can also affect the ability to accurately perceive emotions in others.  For example, some people have difficulty interpreting facial emotion in others, which can lead to person who has had encephalitis not appearing sensitive to emotional changes in others.  This may lead to others, e.g. spouse, family or friends, feeling that the individual is not sensitive to their emotional state.

Some common emotional reactions are outlined below.

Mood swings: Some people who have had encephalitis experience a loss of emotional control.  They may react strongly and unpredictably to events which would not previously have troubled them.  They are also often subject to rapid and marked swings in mood - being for example happy and jokey one minute and tearful the next.

Anxiety: Sometimes people who have had encephalitis feel considerable anxiety and a few become obsessional in their thoughts and actions especially if they are disturbed by their cognitive and personality changes.  For some this may be quite overwhelming. There is a fear that the person concerned feels that they are 'going mad'.  People are often afraid of repeating themselves and often apologise for speaking.

Frustration and Anger: Many people become frustrated by their failings and their slow rate of recovery.  Some are bitter about the illness and a few intensely angry.

Depression: Depression may not surface immediately, it can follow the realisation that life might not ever be as before and that recovering  former physical, psychological and social skills may not be possible.  This might be particularly evident losses or changes in the person’s social roles. In particular, a person may mourn the break up of a relationship and the inability to pursue a former active sporting and social life and chosen career, a mother may feel inadequate in not being able to care for children as before, whilst the father may feel guilt and loss of self­ esteem in not being able to provide for the family.

For some people who have experienced encephalitis rather than there being an increase in emotion the brain injury can cause there to be almost an absence of emotion.  The person might 'know' that something, that they see, say, hear or do is distressing, but they simply do not 'feel' the distress caused.

Changes in self-concept

After encephalitis  people may experience marked changes in their view of themselves,  they are not quite the person they were before. Severe memory problems may result in a disturbing lack of continuity and order to one's life, particularly for those with loss of memory for events before as well as after their illness.  Changes in personality, especially those involving loss of control over emotions, thoughts or actions, can be profoundly disturbing.  There can be perceptual or spatial disorders presenting a confusing and bewildering world within which it is difficult now to play one's full part.  For those with reasoning difficulties life may appear at times an insoluble puzzle.

Whilst frustrated by their current failings, people with who have had encephalitis  tend initially to view any changes as temporary, confident of a good, if not a complete, recovery.  This may be followed by a gradual and painful process of realisation of the full extent of their residual disabilities and an appreciation that they'II not after all recover their former skills and lifestyle.  This may result in a period of depression, characterised by confusion, frustration and uncertainty.  Such reactions are delayed for some people who understandably find it hard to accept their limitations and respond with renewed determination to make a full recovery.  They may set themselves unrealistic targets which may lead to repeated disappointment and despair.

Recovering from encephalitis can be extremely frustrating for everyone concerned.

Counselling from people professionally trained in the psychological effects of encephalitis can help people to come to terms with the overall effects of encephalitis. Such support is highly advisable if you are experiencing emotional problems.  Your GP should be able to refer you in order to assess your needs.

Tel: 1890 609090

Last modified – 15/11/2006