The lived body as a medical topic: an argument for an ethically informed epistemology

Abstract

In this article, we want to explore two interrelated topics concerning human health and current biomedical, clinical practice. Firstly, we reflect upon how people are affected, with regard to their health, when their personal integrity is violated: when their boundaries are transgressed against their will or without their consent. This part of our argument is anchored in documentation from the recently established cross-disciplinary field psycho-neuro-endocrino-immunology, including the neurosciences, genetics and epigenetics. Secondly, we elaborate how people who suffer from bad health and bodily ailments induced by integrity violation are met and understood by doctors and other health care providers. This part of our argument is grounded in a critical approach to the ontological and epistemological underpinnings of dominant biomedical notions that (implicitly or explicitly) define the human body as a biological object devoid of history and experience 1. Finally, we argue that the evidence for adverse impact on health of violation experience makes obvious that current biomedical theory is inappropriate and calls for the phenomenological concept of the lived body. This concept denotes embodied time, space, social relations, and socio-culturally constituted systems of value and meaning. We suggest that framing human bodies as lived bodies in this way does justice to the nature of humans, implying that medicine needs to abandon the ideal of a value-free, objectifying knowledge production in favour of an epistemology appraising the values and meanings of the human life world: in other words, an ethically informed epistemology. Ever more solid epidemiological evidence bespeaks a strong relationship between experienced pain, fear and powerlessness induced by interpersonal and structural integrity violations – and expressed pain, anxiety and helplessness in terms of complex patterns of disorders 2-9. At the same time, this knowledge points to its own methodologically based limitations, unidentifiable within the same framework since it can only say that experience and expression are related, but not how and why. The fact as such has generated the question concerning ‘How adversity gets under the skin’ 10. In attempting to answer the questions of how, in general, experiences are incorporated, and why, in particular, adverse childhood experiences are inscribed on all bodily levels (organs, tissues, cells and genes), clinicians and researchers are faced with the challenges to generate knowledge about conditions and processes that can throw light on the established, documented correlations 2, 9-11. This task requires, however, analytical tools and perspectives extrinsic to medicine. We lean heavily on the phenomenological tradition and draw inspiration from the social sciences 12-14. Of particular importance are the contributions from phenomenology linking subjectivity to the human body, a fundamental premise for superseding the traditional dichotomies between matter/mind, nature/culture and other dichotomies in their wake 15-25. The knowledge that experiences of violation and sickness are related can be regarded as an invitation to clinicians and researchers to scrutinize their conceptualizations and classificatory schemes 26. Likewise, they are urged to reflect on a necessary reorientation of traditional habits of mind 27. If the scientific community, however, chooses to ignore these challenges, it risks contributing to veiling burdening experiences and socio-cultural injustice by diagnosing violated persons as if they were diseased from ‘natural’ origins 28. The ability to demarcate what is self from what is the endangering other is salient for all being. Evolution, humankind's common history, has secured this by means of elaborated systems for identification of and reaction to patterns that denote danger. Ontogenesis, the biographical process of development and learning, serves the same purpose with the same principles. By means of these principles, humankind's history and individual biography are strongly interwoven and embedded within life-enhancing, biological structures such as the immune, hormone and central nervous system, allowing flexible adaptation while preserving stability 29. Thus, an ability to differentiate between self and endangering other is manifest on all existential levels, from the cellular to that of personhood. A wide range of phenomena, from typically or apparently external to internalized, and to internal, can create the personal experience of danger. The typical and pure external ones represent brief or constant physical, thermal and chemical influences or strains, that is, phenomena that have direct influence on the body, while socio-cultural and political influences are of a dissimilar nature. Short- or long-term burdens due to humiliation and scorn inflicted by societal structures or by significant others, can be regarded as internalized norms and views with both direct and indirect bodily effects. Internalized disregard is expressed in the persons' behaviour and imprinted in their bodies in more or less detrimental ways with respect to their health. The internal phenomena, finally, are the consequences of experienced powerlessness, social shame and self-hate that initiate or permit, fuel and maintain destructive and self-destructive processes and actions. The results can express in multiple ways: (1) in behaviours which, as seen from outside, seem to testify to a person's carelessness linked to use of intoxicants and addictive substances, to lack of protection against contamination, or to either overt or convoluted self-neglect and self-destruction 4; (2) in signs indicating sickness, which testify to a breakdown of the innate and adaptive immune systems, expressed in clinical pictures of serial or different infections, in ‘composed’ or coinciding infectious states, or in unusual effects of presumed banal infections 30, 31; (3) in local or systemic inflammations in all kinds of body tissues including autoimmunity, the latter indicating an attack on what is self as if this were ‘other’ 32; (4) lack of proper protection against cellular damage and against the growth of deviant cells due to suppression of the natural killer cells, a cellular part of the immune system 30, 33. In other words, all categories of perceived, experienced or reactivated danger may initiate or fuel three types of processes, all of which, in a certain sense, are responses: infection, inflammation and invasion in the sense of tumour growth. By means of a chronic overtaxation of the systems safeguarding human adaptability and vitality, namely the flexible interplay of the immune, hormone and central nervous system, health is threatened in multiple ways. Typically, this appears as complex chronic disease exemplified by heart and lung diseases, diabetes II, obesity, depression, metabolic syndrome etc. and, even more typical, as patterns or combinations of these, commonly termed co- or multi-morbidity. In conclusion, we may say that people who suffer express – in their suffering – that their existence is threatened. Their very being is informed by efforts to maintain or restore a demarcation between themselves, which is the threatening or dangerous other. This is why they are disturbed in their everyday life and usual tasks, and these disturbances are the reasons why they seek professional assistance. Integrity and vitality are phenomena that constitute human being-in-the-world on all levels, again: from the cellular to that of personhood. Instead of maintaining a model and a terminology of three separate systems, it seems more appropriate to consider these as aspects of human integrity on cellular, hormonal and neural levels, which is strongly supported by the increasing and converging insight in precisely the fields of knowledge the domains of which, until now, are the three aforementioned systems. Given the fact that these specialties increasingly ‘talk together’, the following common message has been engendered: ‘The disparity between physical and psychological stressors is only an illusion. Host defence mechanisms respond in adaptive and meaningful ways to both’ (34, p. 114). Consequently, the researchers are confronted with a challenge to their professional demarcation lines: so-called psychosocial phenomena have an impact on basic objects of their research – cells, hormones and nervous structures – which has been articulated as follows: ‘Fortunately, the initial controversies about whether psychological processes could really impinge upon and modify immune responses have now receded into the pages of history under the weight of the empirical evidence’ (35, p. 1000). Thus, the books of history concerning the dogma of the non-influence of mind on matter have apparently been closed exactly due to the undisputable evidence that mind informs matter, or even shorter: mind matters. This implies that the traditional biomedical framework, grounded in a dualistic concept of mind and matter as both separate and different, with the latter providing a full explanation of the former, has been invalidated. But biomedical researchers keep referring to human experience in the traditional language, informed by both an epistemological and ontological dichotomy. The tendency to remain within a frame of reference that keeps subjectivity and the body apart can hardly be understood unless we take the hegemony of the Cartesian legacy into account. This legacy leaves us with disembodied subjects that communicate, on the one hand, and silent bodies ‘open’ for scrutiny and intervention, on the other. Thus, the prevailing correlation between patient – symptom – subjectivity and less valid information on the one hand, and clinicians – signs – objectivity and highly valid knowledge on the other, is retained 12, 13. In other words: biology is granted primacy, human subjectivity is regarded as an additional and secondary issue and the body remains a silent, depersonalized object. Although patients' experiences, social relationships and their life circumstances are increasingly coming in focus for scholarly attention, the very way these ‘psychosocial’ concerns are presented and discussed bears witness to a deep-seated view that does violence to the human condition – to the fact that human beings live as embodied, social beings in a world of meaning. The term ‘stressor’ and the way it is used is, but, one example 36. ‘Stressors’ – be it a divorce or living with constant fear of a violent father – are conceived of as if they were solely external forces that hit the victim as roofing tiles. In addition to this physicalistic legacy, research and professional discussions are characterized by an oversimplification and decontextualization of human and social affairs. A social event such as a divorce is supposed to mean the same for all people, but what immediately appears as the ‘same’ may be proven to be very different when – if – one gains insight into the particular case. Concordant with the simplified use of ‘stressors’, it is often claimed that the brain is the autonomous interpreter 37, and that human suffering can be objectified with brain-imaging techniques 38, 39. This confusion, reducing the mind to the brain, illustrates clearly the fallacy of biologism, sometimes called the ‘mereological fallacy’ because properties more properly ascribed to the whole person (such as suffering or action) are ascribed to a part of that person – such as the essential organ that is the brain 40. Despite attention to interplay and complexity within the body and despite the recognition – and evidence – that life circumstances have impact on health, most publications from medical and natural scientific quarters give support to the understanding of biological processes as prior, thus remaining, as pointed to by critics from various fields, with a focus on the micro; they ‘prefer to look inward, finding a kernel of in biological objects and as it p. 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