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Meaning-Full Disease

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The book is grounded upon Brian Broom's extensive professional involvement with physical diseases that are a powerful expression of the patients' emotional themes and life-stories. They are meaning-full diseases. They occur commonly, and are the most compelling argument for an urgent acknowledgment of the role of meanings in the healing process. Following the pattern of his first book, Somatic Illness and the Patient's Other Story, Broom shows in case after case that listening and responding to the "story" of patients suffering from persistent physical diseases frequently leads to major reversal of the disease processes. This present book takes a crucial second step. There must be an understandable basis for meaning-full diseases. Resistance to them relates in part to the inability of current Western scientific and biomedical theories to explain them. Broom sets out to construct conceptual frameworks, within which clinicians and patients can see that a close relationship between life experience and the appearance of physical disease really does make sense. His unapologetic grappling with the intellectual challenges comes with depth, breadth, and clarity, and appeals to a wide audience, including clinicians of all kinds - from doctors to psychotherapists - scientists, and serious lay-readers.

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13 Chapters

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1. The phenomena

ePub

We begin with stories, laying out in full view some of the raw, vivid associations that we see between personal experience and physical disease. The common phenomena of meaning-full diseases constitute powerful evidence that the nature of persons, and the diseases of real persons, involve much more than that which is implied by the ordinary practice of Western medicine and science. No matter how we twist and turn, trying to make sense of these phenomena, the truth is that our current biomedical assumptions cannot account for the expression of highly specific and personal meanings in bodily disease, at times with extraordinarily obvious symbolic features. These phenomena communicate as stories, speaking powerfully for a much more holistic way of ‘seeing’ ourselves as patients, and demanding a radical re-thinking of clinical practice by Western biomedical clinicians.

The stories are extremely varied. In some, the meaning is so obvious that the observer is stopped in his tracks. In others, the meaning is at first invisible or obscure; the observer must peek and pry a little, lift up this stone, and then another, and the meaning becomes obvious. Throughout the book I refer to many different kinds of story, but I will start with one that is middle-of-the-road, at the less spectacular end of the meaning-full disease spectrum. The detail of this story suggests that there is a strong connection between the clinical activity or severity of the patient's rheumatoid arthritis and the problems she experiences in close relationship:

 

2. Colliding mind-sets

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It is important to emphasize that in the notion of meaning-full disease I am not focusing upon the numerous meanings that illnesses have for sufferers after they become established. Those kinds of meanings are understood by everybody and are commonly expressed by patients in such questions as “why me?” or “what have I done to deserve this?” or, for example, in the deep disappointment of having to give up, because of injury, a sport around which an athlete has constructed his identity and self-esteem. All illnesses have powerful or significant meanings, in the sense of having emotional impact and consequences.

The meanings of meaning-full disease are those that actually predispose us to illness, that contribute powerfully to the onset of illness, and that play an important role in keeping illness going. They are both personal and shared meanings and stories that play a pivotal role in the emergence of physical disease. They are not just those meanings that emerge for us when we are afflicted with some inexplicable change for the worse in our biological machinery.

 

3. Somatic metaphors

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The phenomenon of somatic metaphor is the most striking example of the many ways in which meanings and other emotional and subjective elements may be demonstrated in physical disease processes. To begin I offer two examples, the first of which is a very obvious somatic metaphor. The second, while reasonably obvious, does require the observer to work a little harder to access the relationships between the patient's meanings and disease manifestation.

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Eunice, a 71-year-old woman, had an 18-month history of generalized thickening of the skin, and tissues under the skin, causing uncomfortable splinting of the chest, and tightness of the arms and upper legs. This thickening was very obvious. Despite her age it was impossible to pinch her skin into folds. Despite intensive investigation a firm diagnosis had not been made. I will not emphasise the medical detail but though the appearances were not classical she was told she had “connective tissue disease” and was accordingly treated with steroids and other potent drugs.

 

4. Language-making and disease

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Somatic metaphors raise many questions as to the nature of personhood, and whether, within the Western cultural and scientific traditions, we have got an adequate framework for understanding persons and their diseases. Because we actually discover somatic metaphors through the correlations of the manifestations of physical diseases with patients’ meanings conveyed through speech and language, an exploration of language-making in relation to meaning-full disease is crucial to an examination of the nature of personhood. Let's begin with a short story:

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A woman, aged thirty four, complains of eight years of nasal congestion, facial soreness, and puffy eyes, all beginning when her mother was diagnosed with scleroderma, a very serious disease that causes both skin and internal organ damage. I could not find an allergic cause for the daughter's symptoms. Discussing her mother, the woman says: “I will always grieve.”

 

5. Meaning-fulldisease explorers

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The assumptions of biomedicine dominate the provision of healthcare in the Western world. These assumptions can be summarized fairly succinctly without much risk of contention. The body is a biological ‘machine.’ Body and mind are separate entities; although there is a connection between them, it is appropriate to consider the body as separate to the mind, and it is appropriate to deliver healthcare by focusing solely on the body. ‘Real’ disease will usually be adequately and completely explained by physical mechanisms; thus, mind, soul, or spirit aspects are peripheral or even irrelevant. Disease occurs in an individual's ‘machine-body’; thus, disease is more or less an individual's bad luck and/or responsibility. These, then, are the basic assumptions, and they have many consequences. For instance, concepts of relationship, family, cultural, societal or other non-physical forces causing individual illness are hard for clinicians to integrate into their thinking. And the so-called ‘psychosomatic’ illnesses must be seen as a special and separate category because for most physical illnesses there is no really relevant role for the mind.

 

6. Disease as communication

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At times, the matching of meanings and disease is so vivid that the disease appears to be communicating the meaning. In chapter three I presented the stories of Eunice and Katrina as examples of somatic metaphor. In Eunice's case we saw the direct communicative impact upon me, as the observing clinician, of the symbolic image of ‘shell’ in both Eunice's language and her body. The potential for the communication of meanings increases because of the manifestations in both the linguistic and the physical dimensions. This leads us to consider disease as a form of communication.

Within the context of physicomaterialist Western biomedicine such an idea must be considered bizarre. But I will risk derision and seriously consider the issue, because the category we call meaning is so closely linked to the symbol-making categories of thought, language, and communication that a discussion of disease as communication becomes an inevitable aspect of a wider discussion of meaning-full disease.

 

7. Who ‘sees’ meaning-full disease?

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The visibility of meaning-full disease is ultimately dependent on the paradigmatic assumptions of the observer, but beyond these more fundamental elements there are a multitude of influences steering us towards one model of illness or another. Ascertaining a relationship between meaning and illness assumes both a willingness to look for such relationships, and an ability to be with the patient in such a way that the meanings and disease correlations can be rendered visible.

Our question, ‘Who ‘sees’ meaning-full disease?,'will be considered in the context of the fact that the general idea that ‘mind,’ or better, human subjective experience, plays a role in health and disease is now commonplace, even if it enjoys only marginal consideration in medical school curricula, or in the health plans and budgets of Western nations.

Throughout the twentieth century hundreds of medical and nonmedical researchers and writers have pointed to clinical phenomena and research studies supporting the effects of the brain or mind on both animal and human immune and endocrine systems as well as disease states. The evidence for these effects, and the general subject of mind/body medicine, has been discussed and argued in many different popular, scientific, and academic forums.

 

8. Meaning-full disease and the lebenswelt

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Many of us take for granted that the way we ‘see’ the world is the way to see the world, or that our peculiar kind of seeing is entirely adequate to the way the world really is. This stance has some advantages. It can enable us to achieve a sense of coherence in our world-view, and a degree of equilibrium with a sense of control over our lives. Therefore, if opening our eyes to other ways of seeing the world causes us difficulty, why on earth would we do it? But the reality of meaning-full disease suggests that opening our eyes may lead to unforeseen benefits well worth transient discomforts and disequilibrium.

I will address the category of the visible and the activities of seeing in more detail, and in different ways, in the next two chapters, but they must be introduced here, too, because of their relevance to our subject, the lebenswelt.

The twentieth century phenomenologists, beginning with Edmund Husserl (1859-1938), had a lot to say about how we apprehend reality. Husserl spoke of a natural attitude, which is the state in which we ‘simply accept the world as a background or horizon for all our more particular experiences and beliefs’ (Sokolowski 1999). In other words it is natural for us to take our seeing for granted, and to squeeze the phenomena of the world through the sieve of prior beliefs, which are thus imposed upon, and shape, the phenomena.

 

9. Meaning-fulldisease and the ‘visible’

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Much is said in this book about that which is seen, and that which is not seen. It was Maurice Merleau-Ponty (1908-61), the eminent French psychologist and philosopher, and another major figure in the development of twentieth-century phenomenology, who really emphasized the notion of ‘visibility,’ in his manuscript The Visible and the Invisible (1968), which was published after his death. He has much to say about the body, but readers accustomed to thinking in terms of a body separated from the mind, or the body as an object separated from its capacity for subjectivity, may find some of Merleau-Ponty's language rather strange. He focused on the lived body, or the body subject, or the bodily nature of the human subject. This emphasis on the conjunction of body and the human capacity for subjectivity is captured in the idea that the body is a chiasm, a crossing-over place that combines subjective experience and objective existence.

In an attempt to find a categorisation that captures these two aspects he employed the word flesh. It seems that he was trying to transcend the limitations of our Western notions of the body. He says, for example, that when we touch one hand with the other, the ‘flesh’ (in the way he uses the word), is both a form of subjective experience (the experience of touch) and an object that can be touched. These two aspects are actually indivisible, but we know them or reflect on them, even construct them, as separate categories. I both feel my hand, and have a hand that feels. My hands, and by extension my body, have, therefore, an ambiguous status as both subject and object. Let's analyse this distinction from the vantage point of visibility. At one moment my hand is ‘visible’ as subject, and then, at another moment, my hand is ‘visible’ as a thing or object. It is the peculiar nature of our bodily existence that it allows this double aspect. We are subject and object at the same time.

 

10. Shifting awareness and different kinds of body

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When it comes to illness most Western patients do assume a separation of mind and body, a stance that frequently blocks opportunities for healing. In many instances this is simply a culturally-derived lack of awareness of the possibilities of a holistic perspective. But, in some, it is much more than that. In the first case described below the patient insists on a physical approach to his symptoms. In his responses we can discern a desperate search for a cure, but also very limited physicalist assumptions of disease causation, and a determination to confine the illness within physical parameters. There is a rigidity in his stance that cannot be easily penetrated. We have already discussed in chapter two the rather similar rigidities seen amongst biomedical clinicians. These rigidities have quite varied origins but, in the patient below, the rigidity seems to be rooted in the patient's underlying terrors of psychological vulnerability. Fortunately many patients are much more flexible in their thinking than either this patient or many clinicians. With relatively little encouragement they allow an expansion of their awareness.

 

11. The scheming body

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Many patients present to doctors with symptoms that cannot be categorized within conventional diagnostic classifications, and, very frequently, patients feel rejected and devalued because the clinician, out of a constrained perspective and sense of powerlessness, reacts by pushing the patient away. The problem is that many symptoms do not ‘map’ clearly onto the usual ways clinicians have of seeing the body. The patient's disorder cannot be explained according to the doctor's ordinary understanding of anatomy or disease processes. Here is a typical example:

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John is aged thirty-nine, and was a valued administrator in a financial services business where growth had been phenomenal, and staffing had not kept up with the work-load increases. He took on more and more responsibility and became progressively exhausted. His wife said of him that ‘he can never say “no!”’ Apparently this was a long-standing pattern, seen in all aspects of his life. Eventually an unexplained episode of deafness in one ear took him to his doctor, who was unable to provide a satisfactory explanation. He returned to work, and suddenly collapsed. He described the sensation as an ‘incredible heaviness’; and ‘it was like my spine was collapsing, shrinking down until it was only two inches long.’ He was conscious during this first event, but unable to move his limbs, which he described as ‘paralysed and heavy’ When he recovered from the paralysis the deafness had gone. He had intensive neurological investigations but no definitive diagnosis was made, and three years later, at the time of consultation with me, was chronically fatigued, unable to work, and was having three to four collapse episodes a day, all rather similar to the original collapse. He hesitated to leave the house and frequently got collapse episodes when left alone. He was confined to home doing gardening, which he enjoyed greatly. He was very angry that the medical profession was dismissive of his symptoms, because he did not fit into their usual diagnostic classification systems and because they were powerless to help him.

 

12. Experience as a ‘fundamental’

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Disease is both a disturbance of the physical and an expression of ‘experience.’ If we have ‘eyes’ to see and ‘ears’ to hear, experience, and its associated meanings, can be discerned simultaneously in both the speech and the physical diseases of patients. The congruence can be vivid.

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At age 44 Valerie had a hysterectomy for fibroids, and about the same time she developed a condition called lichen sclerosus, an unpleasant inflammatory condition of the genitals, which leads to scarring and discomfort (amongst other symptoms). Again about the same time as the lichen sclerosus began, she stopped having a sexual relationship with her husband because her sexual relationship with him was emotionally aversive, and because sex ‘no longer had any meaning’ for her. Later she developed bladder inflammation (cystitis) as well. It became very clear that the marriage had long been unsatisfactory, and much of her anger and frustration stemmed from unresolved emotions relating to her husband's affair 18 years before, to his emotional inaccessibility, and to her inability to mobilize other options like marital counseling or leaving the marriage. I saw the inflammation of the genital and bladder areas as metaphorically expressing her anger, and her need to distance herself from her husband whilst keeping the relationship overtly stable and satisfactory.

 

13. Meaning-full disease and spirit

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For millennia, the peoples of the world have honoured the role of spirit in life, but during the last few hundred years Western culture has increasingly operated out of a physico-materialist world-view. It is interesting then to see that some philosophers are edging towards what some have called the ‘re-enchantment’ of nature, by emphasizing a fundamental role for ‘experience.’ There are, of course, many people taking much more daring steps than this, towards rediscovering the role of spirit in life.

I recall starting training in psychiatry in 1981, and feeling the pervasive professional restraints, at least in New Zealand, upon any discussion of spirit or spiritual values, and, indeed, the lingering and very prevalent twentieth-century hostility amongst mental health professionals towards religion. By the early 1990s, it was increasingly acceptable amongst New Zealanders of European origin to talk (albeit cautiously) about spirit, especially if it concerned the spirituality of our indigenous people, the Maori. It seemed that, for a while at least, it was ‘safe’ to own the existence of spirituality ‘over there,’ to not let it get too close. Now, in 2005, the term spirituality is used widely, and with increasing ease in many forums, though it actually means very different things to different people.

 

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