PART I – WHAT’S IN A NAME?

“The World Health Organization and national surveys report that there is no single consensus on the definition of mental disorder/illness, and that the phrasing used depends on the social, cultural, economic and legal context in different contexts and in different societies”[1]

Introduction

This article is intended to help people with experiences of mental illness take back some power over defining and creating the stories of their lives.  It is written for people who have had an experience or diagnosis of a mental illness and those who care for or support these people; such as family, friends and professionals working in the social services.  It comes as a personal response to working in the mental health system and speaking to many people who have been treated within it.

The Medical Model

The term “mental illness” can be used to describe a broad range of experiences and symptoms.  It is commonly used when someone has been given a particular psychiatric diagnosis such as depression, bipolar disorder or schizophrenia.  The term covers a vast variety of symptoms and experiences.

In our society the dominant paradigm which determines how we think about and respond to people having intensely difficult or unusual mental and emotional experiences is the medical model.  The medical model has the culturally powerful force of science behind it. There is a kind of authority that we give to psychiatrists and psychologists, assuming that in their scientific expertise they can tell us not only how these experiences come about, but also what they mean.  If a psychiatrist tells us we have schizophrenia we believe them – what’s more is that we tend to take on their understanding of what schizophrenia is and what it means to have it.

It is worth exploring the solidity of the perspectives which can have such a powerful influence over people’s lives.

What is a diagnosis?

A mental illness diagnosis is basically taking the symptoms a person presents with and trying to match them with groupings of symptoms called “mental illnesses” or “disorders”.  The current “official” mental illnesses are those listed in the DSM – The Diagnostic and Statistical Manual of Mental Disorders, or the ICD – International Classification of Diseases.  These manuals change over time; categories of mental illnesses are added, removed and altered with each new edition.  It is important to understand that these categories of mental illness are constructions and that these constructions are not static but alter over time.  The DSM itself states: “there is no assumption that each category of mental disorder is a completely discrete entity with absolute boundaries dividing it from other mental disorders or from no mental disorder.” [2]

As an outcome of the dominance of the medical model and also of efforts to reduce stigma about mental illness, an idea has taken hold that mental illness is just like any other physical illness.  The message which often gets communicated is that mental illness is a biologically based brain disorder.  Whilst relationships between some mental illnesses and differences in brain structure and chemistry have been shown, it is by no means clear that mental illness is caused by such differences.  It is not the same thing to show that there is a relationship between two things and saying that one is simply the cause of the other.  For example, take the relationship between happiness and the neurotransmitter serotonin.  It has been shown that a relationship between the two exists.  But is serotonin the cause of happiness?  What about sunshine, your team winning the footy or a good hug?  Doesn’t happiness also cause serotonin?  The relationship between the brain and the experience of mental illness is likely to be more subtle and complex than simply saying mental illness is the result of changes in the brain.  The experience of living and the events and circumstances of our lives need to be fundamentally included in any exploration of mental illness.

Certainly the presence of a mental illness cannot be decidedly measured and tested, like a virus, infection or fractured bone.  Even if it were the case that all mental illness has a biological cause, the fact is that this is not currently testable or even well understood.  Actually, at this time a diagnosis of a mental illness is a subjective assessment based on the professional opinion of a psychiatrist or psychologist.  What is not often realised is that two health professionals may diagnose the same person differently in a significant proportion of cases.  There are many factors involved in this.  The diagnosis is made based on the self-reported symptoms of the client, their appearance and behaviour, and sometimes the reporting of third parties.  Physicians may be presented with different information, and clients naturally present differently on different days.  It has been shown that there are differences in diagnostic trends over time, in different cultures and countries and it has also been suggested that it can be affected by events like the availability of new treatments.[3]

Diagnosis can be a useful tool; it can allow health professionals to gather together information about the results of treatment styles on particular symptoms and thus collect the wisdom of the community in learning how best to treat a person with these symptoms.  It can also be useful to collect information on what the likely outcomes or prognosis are of a particular set of symptoms.  The power of this shouldn’t be underestimated.  However what should be understood – especially by people who are given a diagnosis of a mental illness – is that a diagnosis is not a fact.  That the concept of mental illness, the categories of mental illness, and the diagnosis of a specific mental illness by a particular practitioner are all subjective.  There is space for the people having these experiences to be part of defining what they are, what they mean and the outcomes of having them.

 

PART II THE TRUTH AS TOLD

“the diagnostic manuals have led to an unintended decline in careful evaluation of each individual person’s experiences and social context.”[4]

The Effect of Diagnoisis

The mental health system holds such authority that when someone is diagnosed with a mental illness, that label then becomes true for the system, the community and even more importantly for the individual who has been given the diagnosis.  The person then HAS schizophrenia, depression, or borderline personality disorder.  What’s more is that they often “have it for life”.

The effects of this are many and varied.  It is important to note that for some people there can be positive outcomes to having a diagnosis.  It can allow them to link in with other people who have had similar experiences and receive support or information about them.  It can also help some people feel that what is happening to them is not their fault.

But there are downsides.  Once someone has entered the mental health system and has been given a label such as schizophrenia or borderline personality disorder, the natural tendency is for their behaviours to be interpreted according to their diagnosis.  A famous experiment was done in 1973 into the effects and validity of psychiatric diagnosis.  It is popularly known as “The Rosenhan Experiment” and consisted of two parts.

In the first part, “mentally healthy” people told psychiatrists that they had been hearing single word auditory hallucinations in order to gain admission into psychiatric hospitals.  Once inside the institutions, they were instructed to act normally and report that they felt fine and no longer heard voices, basically to be their normal healthy selves.  None of these people were identified as impostors by the hospital staff.  Their average stay in the psychiatric hospitals was 19 days.  In order to gain release, all of the “pseuodopatients” had to admit that they had a mental illness and begin to take antipsychotic medication.

In the follow up study, a hospital was told that one or more psuedopatients would attempt to gain admission over a three month period.  The role of the hospital was to identify them.  Out of 193 incoming patients, 41 were considered to be pseudopatients and another 42 were suspected of being so.  In fact there had been no pseudopatients sent, and all of the people identified had been ordinary patients.

These experiments suggest that the expectation of a person being either “normal” or “having a mental illness” strongly influences the way they are seen and treated within the mental health system.  Combine this with the authority that is attributed to mental health professionals and the vulnerability of people seeking help for mental and emotional disturbances.  What can occur is that people who are diagnosed with a mental illness take on the biased attitudes about their behaviours, what is happening to them and their own identity.

The Treatment of Mental Illness

Currently the frontline treatment for many mental illnesses is medication.  Whilst psychological and social supports can also be offered, increasingly medication is being seen as the primary treatment.

Some people do experience relief from difficult symptoms when using psychiatric medications.  However the efficacy of these medications is by no means clear or certain.  A 2009 systematic review and meta-analysis of trials in people diagnosed with schizophrenia found that less than half (41%) showed any therapeutic response to an antipsychotic, compared to 24% on placebo.[5]  These results suggest only 17% of people had any significant positive response to the drugs beyond the effect of placebo.

In 2002, an Article published in The Washington Post about the efficacy of antidepressants stated that “A new analysis has found that in the majority of trials conducted by drug companies in recent decades, sugar pills have done as well as – or better than – antidepressants. Companies have had to conduct numerous trials to get two that show a positive result, which is the Food and Drug Administration’s minimum for approval…What’s more, the sugar pills, or placebos, cause profound changes in the same areas of the brain affected by the medicines, according to research published last week… When Leuchter compared the brain changes in patients on placebos, he was amazed to find that many of them had changes in the same parts of the brain that are thought to control important facets of mood… Once the trial was over and the patients who had been given placebos were told as much, they quickly deteriorated. People’s belief in the power of antidepressants may explain why they do well on placebos…”[6]

Influence of Pharmaceutical Companies

The common perceptions from both health practitioners and patients of the high effectiveness of psychiatric medications may be strongly influenced by the drug companies which produce them.  A review of all antidepressant trials submitted to the U.S. Food and Drug Administration from 1987 to 2004 has shown that around half of the trials failed to show any benefit over placebo.  However, because the unsuccessful drug trials are generally not published or are presented in a misleadingly positive light, it appeared in the research literature that 94% of the trials had positive outcomes.[7]  The pharmaceutical companies are a powerful force in politics.  In the U.S., in the seven years between 1998 and 2005 they spent $900 million lobbying on legislation, more than any other industry.  In the same period they donated around $90 million to federal candidates and political parties.[8]  All of these efforts change the landscape of truth and belief around psychiatric medication.  The bias in funding research and politics makes it appear that these drugs are more effective than they are.

Unfortunately psychiatric medications often have side-effects.  Examples of common side effects are drowsiness, nausea, weight gain, sexual dysfunction, skin rashes, menstrual problems, dizziness, rapid heartbeat, rigidity, muscle spasms, blackouts, seizures, clouded thinking and reduced memory.  The choice to take a psychiatric medication is a process of weighing up the potential benefits against the potential costs.  People are generally well-informed about the possible side effects of their medications, however their impressions about the potential benefits are often highly skewed.

The flow-on effect of the pharmaceutical companies’ efforts to convince society of the effectiveness of these drugs is that it also serves to convince the public that mental illness is simply a biologically based brain disorder.

Is there another way?

What is clear is that there are factors other than chemicals which have influence on the healing process.  One is the power of belief and faith suggested by the placebo effect.  The level of attention and care shown to people undertaking drug trials may also be increasing the effectiveness of the “treatment”.  Who knows what outcomes would arise if the amount of money currently being spent on pharmaceutical research and lobbying was spent on exploring more deeply these side-effect free possibilities.

It feels important at this point to recognise that the mental health system is made up of many different institutions and individuals.  The vast majority have good intentions.  There is a significant variety of approaches to and perspectives on mental illness.  A great deal of benefit is provided every day to people who are going through difficult times in their lives.  This is not about labeling the entire system and the people in it as wrong or bad.  It is pointing to a story which underlies much of the way the system operates.  It is about recognising that this story which is often perceived as the hard truth is just one way of telling the tale.

 

PART III – THE FACTS AND THEIR MEANING

“If you want to change the world, you have to change the metaphor.”

 – Joseph Campbell

 

So what does this all mean for people having the kind of experiences commonly labeled as mental illness?  What happens when the edifice of medical certainty about the causes and treatment of mental illness begins to lose its solidity?

Possibility.  Whilst it may be terrifying for people to realise that they are not being soundly held by the mental health system and the perspectives which it is founded on, what then opens up is the possibility for them to create or discover their own perspectives about their experiences.  The frameworks we have about mental illness are not just descriptions of what is occurring, they are also creative.  Placebos can facilitate real healing because people believe that they will.  The way people understand and respond to mental illness affects its outcome.

Two Tales

There are the facts, but there is also the context we put them in.  Within the facts many stories are possible.  A simplified version of the story which is often received through the medical model is:

“Something has gone wrong with your brain.  You have a disease and will probably have it for the rest of your life.  In order to manage it you need to take medication which may reduce the symptoms and improve your quality of life, but they may also have adverse side-effects.”

Here is another story…

“The experiences you are having are a response from your being to your life.  It is an effort of your being to heal itself and create a better, more whole experience of living.  It is a challenge and a trial.  Through understanding more deeply what is happening to you and the underlying reasons why it is occurring, you can emerge a more whole and complete person.  By paying attention to the experience and aligning yourself with the deeper wisdom of it, you will learn what needs to change, what your spirit is truly calling for and what best serves you and those around you.”

This alternate story is based around a few core ideas.

• That the experiences of mental illness have a meaning and a purpose.  This is not to trivialise the intensity and difficulty that can be present.  It is giving that intensity and difficulty a place in the story of people’s lives, with an implicit positive outcome.
• That people have the power to influence the experiences they are having.  By using their own wisdom, knowledge and creativity and those of others, they have the capacity to directly positively affect their own experience.
• There is an inherent wisdom in the organism, the unconscious, which we can align ourselves to.

The vision for this framework is of people being invited and supported to explore their own experiences and potentials.  To learn and grow through them.  Their own understanding and knowledge about what is happening to them is respected and nurtured.  They are supported to create or discover a meaningful context for what is happening to them which makes sense.  This context fits their own stories of their lives.  This doesn’t mean that people have to deal with mental illness alone.  It gives back to them the power and responsibility to seek the kind of assistance which fits their own paradigm of what is happening to them.

People are also able to define for themselves what is problematic about their experiences.  They are not told that their experiences are false or wrong, but learn for themselves what is difficult or not working for them.  The positive sides to their unusual experiences are given attention and respect and not simply labeled as symptoms of an illness.

Those people having experiences of “mental illness” are the driving force of their own journey of healing and becoming.  The system is there to support and empower them, it is not an authority which defines them.  There is an available and accepted diversity of “treatment” styles to suit the diversity of people’s experiences and their frameworks about them.

People going through these experiences are empowered with a genuine hopefulness – not in a manner which is deceptive but in a way which recognises hope as a creative force.  This hope transcends the simple reduction or cessation of symptoms and points towards a life which can be deeper, richer and more meaningful than what came before the experience of mental illness.

So What’s Your Story?

The two perspectives on mental illness described above are not the only possibilities.  There are many stories or frameworks which can fit the facts.  What has been shown here is that what are often presented as facts about the medical model of mental illness are simply elements of a particular story.  The invitation is for people to seek the story which best fits the facts of their life and experiences.  To include within it what is most important to them.  The encouragement is to discover a story which gives these experiences a sense of deep meaning and engenders hope for the quality of these people’s lives.

So what’s your story?