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All families are different and no matter how well functioning your family is there will be major challenges ahead. Initially there may be elation that a loved one has survived the illness but the person themselves may have no recollection of the illness. There can be a conflict of feelings with relief and joy on one side and confusion, even anger on the other, as the person affected finds that they are unable to care for themselves or carry out their roles as they once did.

When encephalitis affects a family, its coping strategies will be severely tested. Spouses often feel isolated and trapped as the roles are reversed and relationships put under strain. Children and siblings can also have emotional problems and their needs overlooked. Extended family and friends often want to help but don’t know how. Accepting your situation can help, however this is not always easy and may be difficult to achieve. Inevitably not all families have good relationships and sometimes the sudden impact of encephalitis adds to already strained relations. Typically families will go through a process of coming to terms with the consequences of the illness then finding ways of coping. In many cases this looks something like the following 5 steps:

1. Why is s/he ill?
   The initial reaction of family and friends is usually a mixture of panic and disbelief as the difficulty in diagnosing the illness becomes apparent. “Why is s/he so ill, when all the tests are normal?” Some of the initial tests are to exclude other conditions, when they present as “normal” a diagnosis of encephalitis becomes more probable. Often encephalitis is diagnosed because all other possible conditions are excluded.


2. S/he’s getting better / What am I doing in hospital?
   As symptoms subside family and friends experience relief and elation. This moment can be a source of conflict between the person affected and friends and family. Family and friends have been through a very traumatic experience and may have been prepared to lose their loved one who in turn may remember nothing of the illness. Some individual’s may in fact not even feel ill and be confused, even angry at finding themselves in hospital.


3. S/he looks normal / I feel terrible
   A good physical recovery is usual after encephalitis but this outwardly good physical appearance can mislead family and friends into believing that the person affected has completely recovered. The person themselves, however, may be struggling with even the simplest tasks.


4. Why can’t s/he pull herself together / I think I’m going mad
   It is at this stage that a referral for a neuropsychological assessment is crucial. The assessment will identify affected brain functions providing an explanation of an individual’s emotions and why some tasks seem no longer possible. The assessment can form the basis of a programme of helpful coping mechanisms and strategies.


5. Life is different now / I am different now
   At this point there is a realisation and acceptance that some limitations are going to be permanent. There is a readjustment of expectations, relationships and roles are redefined.

Last modified: March 2008