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Towards the Light

John Saunders

When the Sun Bursts: The Enigma of Schizophrenia, by Christopher Bollas, Yale University press, 266 pp, £18 99, ISBN: 978-030021473

Mental health is complicated  Responding to mental health problems is more complicated  Responding to those who have schizophrenia is even more problematic.

Despite all of the medical, psychological and social research that has been undertaken, we know little about how the brain (and mind) function and we have not yet developed sophisticated intervention strategies that are guaranteed to work. Our treatments in many cases can be seen as crude attempts to deal with behaviours that we don’t fully understand in terms of causality and underlying pathology. James Joyce, famously speaking of his daughter Lucia, who lived her adult life with a diagnosis of schizophrenia, said “it is one of the most elusive diseases known to man and unknown to medicine”. Little has changed since Joyce’s time.

In this work Christopher Bollas coherently describes his life’s work responding to people with schizophrenia. The book traces the development of his understanding of schizophrenia and he includes many accounts from other colleagues, supervisors, teachers and friends. It has three parts The first focuses on his own learning from his work as a clinician; part two considers theoretical concepts and part three examines psychotherapy in schizophrenia. Bollas’s account is a rigorous and highly intellectual analysis of his professional development  It is lucid, filled with comment and argument and peppered with vignettes from his clinical work.

The issue of schizophrenia over the last hundred years has caused vexatious debate,  primarily centred on questions such as what is the cause of schizophrenia? Is there a single schizophrenia state or a number of types of schizophrenia? Is it a medical or psychological condition or possibly both? Arising from those questions, other arguments present themselves, such as, for example, what type of interventions should we provide? Indeed, what type of interventions do we have and who should provide such interventions? Notwithstanding all of the above, it is also true to say that schizophrenia, more than most other human conditions, has become embroiled in the bigger question about individual wellbeing versus the wellbeing, safety and security of society. That is to say there is a generalised perception in most societies that schizophrenia poses not only threats to the individual but also to his or her wider family, circle of friends and community. This pervasive attitude is reflected in socially stigmatising and discriminatory behaviours, both informally and formally in our society.

When schizophrenia was first coined as a diagnostic term over a hundred years ago by Eugen Bleuler, (from the Greek schism = to split and phrens = the mind), it was described as a condition whereby a person’s mind was in some way split into two. Perversely, this label has encouraged the myth of the split personality as a descriptor of someone who has schizophrenia. The historical, theatrical and literary allusions, such as the Jekyll and Hyde story, have compounded the myths. In reality, the person with schizophrenia has disturbed cognitive processes, resulting in an inability to think logically, poor perception, loss of language and communication skills, and ultimately a loss of functional behaviour. The specific characteristics of schizophrenia include disordered thinking (delusions), false sensory perceptions (hallucinations), feelings of paranoia, fear and inadequacy and a generalised inability to perceive reality. The word schizophrenia has been described as one of the most sinister words in the English language. The use of the label can not only contribute to social stigma but is also an outcome of it and serves to cause further alienation. However, despite its dreadful history, we now know that with effective and multiple interventions people with even the most acute condition can make a significant recovery and contribute to their community as valued citizens.

One of the fundamental questions about schizophrenia is whether it has a genetic component or is caused by factors in the environment; the nature versus nurture debate There is a vast amount of research and anecdotal literature supporting one or the other argument, but by and large the perceived wisdom, even though we don’t have precise understanding, is that schizophrenia arises as a combination of genetic vulnerability and vulnerability towards environmental factors. So, in short, people who have some form of genetic predisposition and who experience poor environmental influences may be at risk of developing a psychosis and/or schizophrenia.

Bollas is firmly of the view that environment is a possible cause of schizophrenia and has devoted his entire working life to using a psycho-analytical approach to resolving it. His stance on medical intervention is fairly clear and I quote: “No doubt there are follow-up studies of formerly hospitalised schizophrenics, showing that long-term maintenance medications and repeated hospitalisations have proved effective. However, the community of doctors, psychiatrists, psychologists and others who ply the trade of the pharmaceutical companies, in the maintenance and control of schizophrenia, may fail to ask the question of ‘at what cost’?” Later on he says “people with schizophrenia may need to be in hospital or take some form of medication in order to help rediscover the useful parts of the mind. However, I am also aware of successful work with schizophrenics in which no medication has been administered and the person has never been in hospital.”

While the author gives extensive coverage to examples where he describes people who have made significant improvement as a result of psycho-therapeutic interventions, the book falls short of suggesting that recovery from schizophrenia is possible. Bollas fails in my view to acknowledge the significant body of opinion developed over the last twenty years which suggests that recovery is a real possibility in schizophrenia. Most mental health professionals now agree that there is a recovery process, which is characterised by multiple interventions from psychiatry, psychology and social work and which is person-centred and community-based and allows people to take control of the situation they find themselves in and to work in partnership to develop ways of dealing with the condition and improving the quality of their lives. Simply put, schizophrenia is a condition that one can recover from, but this requires support and help from professionals, family and friends and may take many years to achieve. Most developed countries now have mental health policies and practices which at least acknowledge the process of recovery, and at best have developed systems of delivering care which promote and encourage recovery. In Ireland the national mental health policy “Vision for Change” clearly sets out a recovery perspective. It says “there is a need to adopt a recovery perspective at all levels of service delivery and while recovery does not necessarily imply a cure, it does suggest that the individual can live a productive and meaningful life despite vulnerabilities that may persist, equipped with the necessary self-understanding and resources to minimise relapse.” Recovery is about multiple interventions being provided by a variety of professionals and involves the individual and his family in working out a detailed recovery plan which is person-centred, appropriate, timely and deliverable.

Notwithstanding the noble aspirations of mental health policy, Ireland still has much to do to fully embrace the concepts and practice of recovery-orientated mental health services. While in the last couple of years there have been overt attempts to embed recovery in mental health service delivery, services are by enlarge still controlled and delivered through a medical model which is hierarchical, linear and heavily reliant on pharmacological interventions. It will take many years for there to be a significant cultural shift away from a medical psychiatric approach towards what is termed a biopsychosocial one which engenders a recovery model. As always the problem is not ideas but implementation

Recovery has been the clarion call shepherding radical change in the paradigms that explain mental health and mental health services during the past twenty years. Largely representing the intellectual product and lived experience of consumers, survivors and ex-patients, recovery champions a totally different picture of what it means to be diagnosed with mental illness, especially a serious mental illness such as schizophrenia, major depression, or bi-polar disorder. People with serious psychiatric disorders learned that, despite the symptoms and disabilities, mental illness need not irrevocably impede their life goals. Hope is a reality, and psychological well-being is achievable

With these kinds of messages, recovery signalled a monumental revolution in mental health. Up to this point, people with mental health problems had to foster ideas of hope and recovery and well-being in a mental health system that viewed serious psychiatric disorders as harbingers of doom. According to the old school, people with serious mental illness needed to accept that normal life was impossible, that dreams of independence were unattainable and that long-term institutionalisation was inescapable. Schizophrenia, in particular, was known as the “kiss of death” diagnosis, with an essential treatment goal being the recognition of one’s limitations.  In the face of such gloomy prognoses, notions of recovery seemed to be pipe dreams at best and just another delusional product of the illness.

As a result of this heritage, most psychologists, psychiatrists, and other mental health professionals were late arrivals to the idea of recovery. Before 1990, students of the major mental health disciplines learned that the serious mental illnesses were defined as poor prognoses with progressively downhill courses. Treatment was limited to custodial options. Hence, it is with uncertainty and trepidation that mental health professionals are learning to replace old notions that serious mental illness results in unconquerable disabilities with new ideas that all people can recover from such illness.

Many people find the definition of recovery as outcome to be unsatisfactory. It suggests an evaluative component; the patient is only a person if he or she meets some arbitrary and externally imposed criterion. As an alternative, this group proposes recovery as a process, namely, people who are concerned about their psychological well-being, struggling with their symptoms and attempting to achieve their life goals are “in recovery” regardless of where they fail in terms of any outcome criteria. As a result, the process approach to recovery focuses less on measuring whether any change has occurred or end state has been achieved and instead concerns itself with indicators that suggest that the person is in recovery. Several important concepts in this area include the following:

Psychological well-being: experiencing the present with both its satisfactions and its limitations as a personally meaningful and acceptable condition;
Hope: looking toward the future with the promise of continued satisfaction and achievement despite the limitations that life may bring, and
Spirituality: looking beyond the exigencies of the immediate world for inspiration and guidance

Mental health professionals quickly realise that the concepts defining recovery as a process deal in ideas that are not grounded in typical theories of psychiatry and psychology.

Recovery from schizophrenia is not the same as a cure. Individuals can recover and live reasonably normal and full lives while continuing to experience the vulnerability to relapse and the protective effects of indefinite treatment. Parallels are obvious for recovery from myocardial infarctions, strokes, diabetes, and rheumatoid arthritis. The participation of the individual with schizophrenia in comprehensive, coordinated, competent and person-centred services will facilitate the control of symptoms and engagement in psychosocial activities.

Just as there are clear differences between people recovering from alcoholism or drug addiction and those who have made sustained recoveries with long-term abstinence and normal psychosocial functioning, the same holds for recovery from schizophrenia. Many individuals and professionals have confounded recovering with recovery by failing to grasp the distinction between processes and stages of preparation for recovery from a reliable, normative, outcome definition of recovery. Individuals can take any of numerous pathways en route to recoveries that involve many attributes at the level of personal qualities, social supports, therapies and subjective experience.

Examples of attributes and experiences that may be associated with individuals who are progressing toward but have not yet achieved recovery include hope, self-responsibility, de-stigmatisation, empowerment, self-acceptance, insight and awareness, collaboration with professionals, sense of autonomy and self-control, and participation in self-help and consumer-run programmes. Subjective experiences and attributes can be viewed as mediating the process leading to recovery, but also remaining present after recovery has been achieved. For example, a treatment or self-help programme may engender a feeling of empowerment in an individual that can be instrumental in motivating that person to sustain treatment and rehabilitation until criteria used to define recovery have been achieved. Once recovery has been achieved, empowerment may be even more firmly subjectively experienced, because more objective indicators of independence, employment, and freedom from psychosis would validate it.

Having hope for future improvements in quality of life may be reinforced by the enthusiasm and collaborative alliance embedded in a therapeutic relationship. Many consumers who have written first-person accounts of their recovery have pointed to the importance of a long-term relationship with a practitioner who refused to despair and reflected a beacon of hope for ultimate improvement and recovery. Hope, in turn, can serve to fuel motivation for change and active participation in clinical services or self-help actions that are stepping stones toward recovery. Once achieved, recovery can continue to reinforce a person’s hope for an improved quality of life, thus facilitating self-responsibility and an attitude of “getting on with life”.

Christopher Bollas’s book is a readable and practical account of his work with schizophrenia. It does not however, acknowledge the significant development in recovery theory and practice that has marked the last twenty years of mental health policy. While I accept the bona fides of his treatise, I would take issue with his own presentation: for example, throughout the book he makes reference to people with schizophrenia as “the schizophrenic”; this is a small quibble about language, but it makes an enormous contribution to how we view people. In other words to refer to “the schizophrenic” is to ignore and become blinded to the fact that there is a whole person behind that label. Indeed the whole recovery movement to a large extent shuns the idea that you are framed by a medical diagnosis and instead takes the view that such diagnoses are of limited use.

I do not want to decry Bollas’s life work but I do get a sense from reading his book that he views people with schizophrenia (my phrasing) as somewhat different from others and almost segregates them from society in his frame of reference. His book is a memoir of “us and them”, accentuating the classical ideas of normal/not normal. Such a perception, I suggest, is not helpful and only serves to perpetuate the myth of difference which can fuel, given the right conditions, an environment of intolerance, and ultimately hostility and rejection. Such a climate is not a recipe for recovery no matter how rigorous the intellectual analysis. For Bollas, “schizophrenia is another form of being human”.

Finally, one has to bear in mind that Bollas’s experiences are grounded in the delivery of psycho-therapeutic interventions in the United States over the last forty years, and are coloured by American societal attitudes, which predominantly focus on the need to protect society from people who may be perceived to present risks. This view of people with mental ill health and schizophrenia in particular is not conducive to individualised recovery, the provision of person-centred services and the re-integration and re-valuing of people into their own community.

1/4/2015

John Saunders is director of Shine (formerly Schizophrenia Ireland).

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