This series of articles was inspired by our clinical work with people who have a diagnosis of schizophrenia and their families. Studies have indicated the important role that psychological and social interventions can have for people with a diagnosis of schizophrenia. People with this diagnosis can have an important role in the society and recovery is not based solely on the removal of symptoms but on the development of valued activities. Many people with this diagnosis, and their families, often have access to very little relevant information. They think that a diagnosis of schizophrenia might mena having no future at all. This is absolutley wrong. The intention of this series is to provide information that will be useful with respect to their own care, both medical and psychological. Finally, I would like to thank the many sufferers with whom we have worked over the years.
Studies indicate that schizophrenia is a common problem. On average, one in every hundred people would be expected to suffer from schizophrenia. There are also many people who may experience some, but not all, of the symptoms of schizophrenia. Therefore many more than one in a hundred people have had experiences relevant to this disorder. Schizophrenia can occur at any time but is usually diagnosed in late adolescence or early adulthood. It seems to occur when people are beginning to move towards adult life and living independently from their families. Generally people will come into contact with someone in their family or circle of friends who has had this diagnosis.
For a long time it was thought that people with this diagnosis do very poorly in life. In fact, Kraepelin, the psychiatrist who first observed the symptoms of schizophrenia believed that following diagnosis people did not recover and that the vast majority became more unwell as time went on. In contrast to this, Bleuler, another founding father of modern psychiatry, strongly held that people often experience remission and recovery from this disorder. Although he was an influential figure, his conclusions about recovery from schizophrenia held less influence for a long time. Kraepelin’s more pessimistic account was firmly held until the advent of modern medications and structured counseling. In the third world, it is still publicly reported as a devastating disease. In the absence of good treatment schizophrenia is still a term that can be frightening and embarrassing. It can still have very painful consequences.
Kraepelin was dead wrong!
Current evidence does not support Kraepelin’s approach that recovery is impossible and the course usually worsens over time. There have been numerous studies in recent years which indicated that more than fifty per cent of people with schizophrenia do well. They either experience one episode with no further recurrence or they have several episodes but are able to function normally in between these. Around one in three appear to experience repeated episodes with ongoing difficulties. Thus, most people cope well with this diagnosis through standard treatment. Those people who have ongoing difficulties still live valued lives and benefit from psychological and as well as pharmacological support.
Our intention is to provide people with information which is relevant and helpful, so that they can be active in influencing decisions about their care. This should help each individual to have a degree of control over their experiences and help them achieve their best outcome.
However, it is an earth quake with aftershocks!
The social and personal costs of schizophrenia vary widely.
- It is clear that for many people schizophrenia is associated with significant social and personal costs. The onset of schizophrenia can be associated with a shattering of important personal and family relationships.
- People can have careers or education disrupted or ended abruptly.
- Hospital admissions and the circumstances leading up to them can be experienced as traumatic.
- People can feel that their plans and hopes for the future have been ruined by the onset of schizophrenia.
Only the wearer knows where the shoe pinches!
There can be a great deal of variation in how people interpret their symptoms. Where one person will find their voices very distressing, someone else might regard their voices as benefit. Thus, some people apparently live relatively happily with the experience of voices. However, when voices are interpreted as powerful, hostile and frightening, such experiences are much harder to cope with. In these situations people will often become increasingly distressed.
Family and friends – there is a ripple effect.
Strangely enough some of the difficulties they experience result from their contact with mental health services. As no service is perfect, the vast majority of individuals working in mental health are blamed on account of medications and their side effects and because they ask the patients and families to do more.
As many people with this diagnosis experienced significant difficulties people more closer to them also experiencing difficulties. The experience of schizophrenia can impact beyond the individual into their immediate family and social circle. Relatives and friends may not understand what is happening to their partner, child or work colleague, or they may be very frightened by what the individual is going through. Family and friends arc important to all of us, even if we may currently see little of them. Some people with a diagnosis of schizophrenia can have very strong and supportive family relationships that are extremely beneficial. However, this is not always the case. If the illness is recurrent, there may be confusion or anger about why it is continuing and why apparent periods of recovery have not been sustained. Sometimes anger can then be directed at the individual with schizophrenia who is sometimes seen as lazy or self-centered for not getting well. A common source of tension can be the negative symptoms of apathy and low motivation. Equally, conflict can run in the other direction where service users perceive hostility where it is absent or where there are basic disagreements about the nature of the problem and the best approaches to this. This can lead to arguments and tension, which can at times make the initial symptoms worse.
Too many families feel isolated and lost, unsure of what the meaning or implications of this diagnosis are and unsure of how to help. Again it is important that families have access to structured counseling. Although this issue is increasingly being addressed, there, is still a long way to go.