Stigma in Schizophrenia
In media reporting and in public opinion schizophrenia probably has more negative associations that any other public health issue in the UK today. Inevitably the negative beliefs and ideas that the public, the press, employers and health workers have around this condition impacts on the lives of those suffering from it. We call this effect stigma and some working in mental health particularly the mainstream mental health charities have suggested that stigma is one of the biggest problems facing people living with mental illness and with some even claiming that the stigma can be worse than the symptoms of the illness itself.
There are few people who have experienced schizophrenia from the inside who would agree that the stigma faced by people with schizophrenia in society is somehow comparable with a constant assault on the psyche by persecutory voices and terrifying paranoid delusions. However the notion that this is so has gained some popularity in recent years.
Nevertheless stigma is very real and will have adverse effects on people’s psychological health, increasing feelings of isolation and leading to poor self esteem and feelings of hopelessness. It will also have very real practical effects by causing discrimination in employment, education and housing. Below we consider some of the arguments around stigma in a much larger debate that clearly has a long time yet to run.
Why Does Stigma Exist?
It has been a traditional role of the British news media to both lead and reflect public opinion and without a doubt what the public thinks and believes about schizophrenia is very much conditioned by what they read and hear in the news. There is no doubt that in sections of the British news media there is at best a poor understanding of schizophrenia and at worst a deliberate attempt to smear those people by the use of inflammatory and rancorous reporting.
Sometimes the headlines are seen by the public to be outrageous as in the case of The Sun’s infamous September 2003 front page headline “Bonkers Bruno Locked Up”, a story about the boxer Frank Bruno’s mental illness.5
It is true that the Sun, in the face of clamorous public opposition to this, back-tracked very quickly and made a donation to a mental health charity in reparation but nevertheless I have personally heard editors of national newspapers quite openly justify their use of terms like “psycho” to describe people with schizophrenia. I have also seen papers such as the Daily Mail describe a person with schizophrenia who had killed as “evil”. Such provocative language may help them to sell newspapers but it does nothing to help alleviate the very real problem of dangerous behaviour that people with schizophrenia face in the UK today.
And it is on this issue of reporting dangerous behaviour that real questions arise. Because whilst the press will report in great detail on every incidence of violence by people with schizophrenia only a tiny fraction of the thousand suicides by people with schizophrenia in the UK each year are reported at all and very few of them make it to the national press. This disparity in reporting is not accidental. It is important to some sections of the media to be able to demonise people with schizophrenia and the reality that people with schizophrenia are more often than not victims of their own dangerous behaviour is an inconvenient truth. In general press reports that focus on violence by people with serious mental illness outnumber sympathetic reports by about four to one.6
But where media reporting is concerned it is as much about what is left unsaid as the terms that the media use. It is rare to see a story about a violent incident involving schizophrenia that gives any background information about the condition to put the act into context. For instance what schizophrenia is, what causes it or who are affected. And there is rarely any discussion about the factors that exacerbate the condition and make dangerous behaviour more likely: factors like the desperate under-funding of the Mental Health Service: another inconvenient truth. Violent acts tend to be presented by the media as criminal in intent when clearly no crime can have been committed if the perpetrator lacked the mental capacity necessary to form any intent.
However we cannot lay all the blame for stigma at the door of the news media. There has been a long tradition of demonising the mentally ill in our society. For instance until only very recently it was forbidden for any person with a mental illness to become an MP or hold office as a company director. The belief that people with mental illness are at best permanently incapable of life in mainstream society and at worst a threat to it has endured over many centuries and it is only recently that it has started to be challenged.
Against this background of centuries of negative attitudes it is not surprising that they are so widespread today. And to be fair the press would argue that their role is not just to lead public opinion but also to reflect it and that the way that they report mental health stories in many cases only reflects what the public are thinking anyway.
What is Being Done About Stigma?
In 2007 the UK’s leading mental health charities Rethink and Mind established the biggest ever anti-stigma programme called Time to Change funded by money from the Lottery and the government. This has run a number of high profile campaigns to work on the problem of stigma including encouraging mental health awareness training for professionals and getting celebrities who have experience of mental illness to go public about their problems. The project has been supported by research by the Institute of Psychiatry in London which claims to be able to measure stigma and which has shown small but measurable improvements in stigma amongst the general population over the time of the campaign.
Whilst this is very encouraging it does little to address society’s attitudes to schizophrenia which have so far constituted a very small part of the work carried out. Before we can do that we need to confront the issues that are a unique feature of attitudes towards schizophrenia and which other mental illnesses do not suffer from to the same extent: issues such as dangerous behaviour. Unless we start to talk about these issues honestly we will not begin to address the stigma.
There has also been a movement in education to improve awareness of mental health issues by asking people with mental illness into schools and colleges to talk to the students about their lives. Some research has suggested that having direct contact with people with mental illness themselves is an effective way of reducing negative attitudes. In addition professionals whose work will bring them into contact with mental illness such as doctors and social workers are now required to have a basic level of mental health awareness training.
Is Stigma in Schizophrenia Inevitable?
The high degree of stigma surrounding schizophrenia is beyond argument. Driven by rancorous, inaccurate and biased media reporting, public perceptions of schizophrenia still centre on the risk of violence and deviancy. However the problem here lies not only with the stigma but also with the condition itself. There is nothing positive about schizophrenia. It is a severe and disabling condition often involving bizarrely disturbed behaviour and that at best will interrupt a promising career and at worst end it altogether.
Schizophrenia also has a devastatingly disruptive effect on the sufferer’s life and people with schizophrenia are disproportionately represented in our prisons and homeless hostels
The association with dangerous behaviour is also a very real one. People with schizophrenia are more at risk of violent behaviour including homicide and somewhere between 800 and 1,800 people with schizophrenia will die by their own hand each year in the UK. alone.1,2 Given that schizophrenia has all the negatives and none of the positives it is easy to see why it attracts so much stigma and indeed it may be argued that stigma is a natural and inevitable part of the schizophrenia condition.
Perhaps then the prevailing view in government that stigma can eventually be banished to history is flawed and that however much awareness-raising we do there will always be an element of stigma attached to this condition with which we, as people living with schizophrenia will have to contend.
Do We Need a Fresh to Take a Fresh View of Stigma?
Perhaps also to fully understand stigma we have to entertain a wider definition than currently exists. Perhaps when we talk about stigma we should consider not only the archaic beliefs of journalists and the public but also the overarching mindset that seems to exist amongst many mental health workers both in the NHS and the third sector organisations (the charities) that sees a diagnosis of schizophrenia as being a life sentence to low achievement and in which permanent unemployment is just the natural state.
And perhaps we should include in our definition of stigma the self view of people with schizophrenia themselves who, following years of the most brutal assaults by persecutory delusions and voices, have little sense of their own self worth and even less appreciation of their capabilities. This has little to do with the diagnosis and everything to do with the symptoms.
We should also consider that many of the secondary effects of the episode of schizophrenia also impart considerable stigma. For instance most employers will regard any period of unemployment longer than a few months with intense suspicion when considering applicants for employment. People who have spent ten years out of work because of recurring episodes of schizophrenia will clearly be disadvantaged by these attitudes irrespective of any harm that their diagnosis may do. Similarly damage to personal reputation, contact with the criminal justice system and break ups in close relationships will all feed into the stigma that people with schizophrenia face and are related to the illness and not simply to the diagnosis.
There are also those who now argue that stigma itself is not as deleterious as was once thought and that some stigma can actually be protective, that is in making the person aware of their condition they will be more aware of the need to combat it.3
What Can We Do About Stigma?
If we accept then that some stigma in schizophrenia is inevitable then perhaps in addition to our efforts to combat stigma we also need to provide people with schizophrenia with the support and guidance that they need to overcome the effects of stigma on their lives as part of an overall anti-stigma strategy. It is quite possible that whilst the stigma associated with schizophrenia may be inevitable it is not necessarily insurmountable and that there are specific measures that can be taken to mitigate its effects.
First of all by cultivating the self esteem of the person with schizophrenia, whose ability to believe in themselves has often been badly damaged, they can be provided with the foundations on which to rebuild their lives and that inner strength that they will need in the many struggles that lay ahead. 4
Secondly we must provide practical support so that the aspirations to study or to get back into work become more easily achievable. It is so often the case that when a person with schizophrenia sees their symptoms subside they are promptly cut off from any ongoing support from the Mental Health Service. However, although at this point their needs may have changed they are no less in need of support to help them access work or study in whatever capacity they may be able.
In the last 50 years we have made considerable progress in improving the medical outcomes of people with schizophrenia in the UK but during the same time we done very little to improve their social outcomes. As a result very few people with schizophrenia are in any kind of work in this country. This is largely a result of the very poor levels of practical support available for people with schizophrenia after their crisis has passed and they are beginning to think about taking their lives forward.
But whilst these practical measures are important it is also vitally necessary to conquer the mindset that affects so many of those living and working with this condition that sees a diagnosis of schizophrenia as being a life sentence to low achievement.
Stigma in schizophrenia is a fact of life that is rooted as much in the features of the illness itself as in the myths that surround it in media reporting and public opinion. Believing that we will ever be able to defeat stigma is probably flawed but whilst our efforts to reduce it should not abate we should also try to give people with schizophrenia themselves the skills that they will need to overcome stigma as it effects their daily lives.
References
1. Buchanan A, Fahy T, Walsh E, 2002, Violence and schizophrenia: examining the evidence, Published in the British Journal of Psychiatry.
2. Accurate figures of deaths by suicide amongst people with schizophrenia are difficult to derive. However by drawing on various UK and US sources a mortality rate due to suicide alone of 300 to 600 per 100,000 per year seems to be a good and close approximation.
3. Leff J, 1997, Care in the Community, John Wiley, p146
4. Watkins J, Living with Schizophrenia, p91
5, Sun on the Ropes Over Bonkers Bruno Story, reported in the Guardian, 23/09/2003.
6. Philo G, 1994, Media Images and Popular Beliefs, published in Psychiatric Bulletin
Copyright © January 2016 LWS (UK) CIC.