EASA, 2006: EASA06: Europe and the world
Bristol, UK, 18/09/2006 – 21/09/2006
Towards an anthropology of medically unexplained symptoms
Location Royal Fort Drawing
Date and Start Time 20 Sep, 2006 at 11:30
Medically unexplained symptoms provide unique insight into how culture is embodied, and how distress is expressed. This leads to discussions of the process of suffering and the quest for meaning in the context of everyday lives of somatising patients.
Medically unexplained symptoms, somatisation or functional disorders are different descriptive terms of a common human condition of suffering known in biomedicine as: conditions where a patient complains of physical symptoms that cause excessive worry or discomfort or lead the patient to seek treatment but for which no adequate organ pathology or patho-physiological basis can be found. The condition has been known throughout history with different names and diagnoses but captures renewed attention today because of its increase in prevalence. The phenomenon and the specific illness condition as such appeal strongly to more than just biomedical scrutiny. Psychologists, sociologists and medical anthropologists have contributed to analyses of different aspects of somatisation. In this workshop we would like to focus on different anthropological aspects of somatisation, both empirical and theoretical, emphasising elements of process and change. Cultural norms and illness perceptions are raised showing important social constructions of identity and normality. Explanatory models and diagnoses influence the social construction of identity, sick role and illness behaviour in the interaction between health professionals and patients. Furthermore, somatisation points to basic cultural representations of the mind-body dualism and its relation to persistent risks of stigma. Sick absence and change in work situations change and create new social relations and strategies. Managing unexplained conditions and uncertainty might call for meaning, eg through enhanced religious activity, spiritual healing or other complementary therapies. Overall the workshop seeks to invoke anthropological research in general, addressing the above-mentioned approaches or others within the frames of process, change and continuity. From this starting point we wish to creatively discuss and develop analytical and theoretical core issues in relation to medically unexplained symptoms.
Violating the body suffering from medically unexplained symptoms: the power of family practice and the Danish social welfare system
Being ill and seeking treatment always involves a relationship between the patient and the doctor that is characterized by a certain degree of hierarchy, mostly leading to acknowledgement and recognition of a sick role. Patients with medically unexplained symptoms (MUS), however, experience marginality and lack of recognition when seeking treatment, because of their illness behavior as well as their actual sufferings, which are difficult to categorize and diagnose.
For almost two years I have followed and interviewed 10 informants who were sampled from family practice and who at the onset of the study had a recent symptom history of MUS. The focus of the study is the social construction of illness behavior as a social process. My results point to both different ways of understanding illness and to different processes of developing identities and strategies in life, but also to various experiences of being subordinated, delegitimized and marginalized as an individual person. This experience is most often presented as an unambiguous experience of an embodied illness but also refers strongly to the power of institutional authority.
In this paper I wish to argue that the patients with MUS endure sufferings of two different kinds, although interrelated. First their physical symptoms experience cause them pain, uneasiness and distress reaching into their family life, economy and psychological well-being. Second the practices, procedures and norms exhibited by and implemented through primary care and the system of social welfare contribute with sufferings which affect the construction of identity and body.
Enduring and containing: medical anthropology challenging anthropological theory
Anthropological research on symptoms without biomedical names has explored various ways and strategies that people create and use in their ambiguous situations. In addition to active help-seeking in the biomedical and/or alternative domains of care, some recent studies have highlighted a variety of peoples' ways of to cope in the everyday contexts.
Some studies in medical anthropology and in ethnographic research on fragile spheres of human life more generally, emphasize enduring or "containing" as an important but anthropologically neglected ground considering people's ways of acting. Enduring may constitute of small, minimal, often repetitive agency, occasionally of just dwelling, or lingering, embedded in the everyday. It implies that suffering in human life is not solely an experience but also a verb, something that constitutes genuinely agency. The notion of illness behavior does not grasp this kind of agency, neither does the vocabulary of agency that anthropology has in use more generally.
The notion of agency in social sciences in embedded profoundly in the Weberian and Parsonian heritage. Accordingly, agency is described in rational - and mental - terms either highlighting choice or normativity. The goal of action is constitutes of change, frequently defined as a social change or transformation. Maintenance or habituality are notions that are used dichotomously for action that does not fit the category of rational action. According to some pragmatist thinking in anthropology, enduring belongs not quite to the domain of these notions either because it is intentional and voluntary - but also something else.
In this paper my aim is to focus on enduring - or "containment" - as modalities of human agency. My arguments are based on recent research in this domain and my ethnography on people with chronic pain.
Negotiating the ambiguity: fibromyalgia in different clinical arenas
Background: Fibromyalgia is considered a borderline situation between normality and pathology. The aetiology, whether physical or psychological, and the diagnostic procedures of this condition are contested by biomedicine. The absence of any objective test or specific biological marker that allows diagnosis in an unequivocal form adds to the ambiguity of the condition. This study focuses on the process of negotiation of this diagnostic category and the problems arisen from the lack of objective tests for pain.
Methods: Fieldwork carried out over a six month period in two different outpatient settings in Spain, a rheumatology clinic and a psychiatric clinic. Participant-observation was used to explore doctor-patient interaction and the diagnostic process of fibromyalgia.
Results: Fibromyalgia diagnosis is usually carried out solely on the basis of the patient's narrative of symptoms (without physical exploration). Throughout the diagnosis process some psychological and social characteristics are automatically attributed to fibromyalgic patients and they are conceptualized as conflictive. On occasions this labelling masks the diagnosis or confuses it with other physical conditions.
Conclusions: Fibromyalgia, due to problems both in aetiology and diagnostic procedures, is used as a label to classify doctor-patient interaction and as a moral characterization of the sick person. In this paper I will argue that the diagnosis of fibromyalgia supposes a conflict between sufferers and physicians. Doctors seek to avoid this situation by the concealment of the diagnosis or diagnosing another disease more coherent with their medical speciality model.
Body, health care and state welfare systems: new perceptions of back pain and the social process of recovery
Within the new paradigm of back pain treatment there is less focus on pathology and specific diagnosis and more on psychosomatic elements and the social process of healing. This new paradigm does not work equally well with all patients. For some the treatment results in early recovery while for others the result is chronic back pain. This paper wants to explore the differential response to treatment among patients with back pain in Denmark. The differential response raises questions about the patient's perception of illness, experience of body and perceived identity. These perceptions develop on the basis of the relation between patient and health care system, including development of sick role, and the patient's relation to the labour market and society at large. Following from Alonzo's theory of illness as situational and Ware's analysis of the social processes of illness the paper explores recovery as a social process.
New social welfare laws in Denmark also stress the focus on the social process of recovery for back pain patients. According to new laws all persons should be given the chance so support him or herself through a job adapted to the person's abilities. Ill persons thus have to be tested in an actual work situation to clarify his or her abilities. Support from the social welfare system is thus no longer based on a biomedical diagnosis, but on a test of the abilities of the ill person.
Based on case stories the paper will show how new perceptions of illness are established that also affect the sick person's perception of his own body.
Experience, meaning and transformation: MUS patients' experience of Danish healing rituals
How is a ritual able to transform a sick person into a healthy person? This question is touching on an old anthropological issue, namely the working of ritual and is also the topic of this presentation. More specifically it deals with Danish MUS patients' experience and benefit of spiritual healing. MUS or medically unexplained symptoms is defined by biomedicine as: complaints of physical symptoms for which no adequate physiological basis can be found. Diagnosis is thus problematic and ambivalent. As a consequence the reality of patients' subjectively experienced symptoms is often misbelieved and unrecognized. Suffering is one way to challenge the order of a person's worldview and creates problems of meaning. MUS patients can be viewed as liminal persons, 'betwixt-and-between' social categories and as such their condition as a 'double disorder'.
One way of managing social liminality and uncertainty is a quest for meaning and MUS patients with their double disorder are in special need of meaning. Rituals are traditionally connected with uncertainty in all areas of life and also with suffering as a way to create a sense of certainty, order and meaning in a seemingly chaotic world. With a point of departure in MUS patients' experience of 'bodily-lived-meaning' I will try to develop an understanding of how bodily experienced images of body and self during a healing ritual work to transform the patient and how a bodily experienced meaning subsequently is negotiated and constructed by healer and patient in common and play an important role in the patients' transformation process.
Antipathy, intolerance and ritual prohibitions
The Brazilian Candomblé, an initiation cult of African origin, was the empirical context in which I carried out my research, the fundamental goal being to understand the role played by ritual prohibitions known
as 'quizilas' in relation to the cult's 'mythical ancestors', the orixàs. My fieldwork led to the following hypothesis: on the one hand, there exists a system of prophylactic prohibitions designed to protect against 'negative energies', described as a sensation of weakness or irritability, and including other psychosomatic symptoms; on the other hand, there is a system of negative hypersensitivities or 'antipathies' which feed on allergic reactions (see Smith: 1979), especially in the realm of nutrition. Elements such as animals, food, drink, colours, and so on, linked to incidents concerned with the orixàs during their mythical existence justify the feelings of repulsion and the symptoms of intolerance. At the same time, new allergic reactions that follow the ingestion of certain types of food or drink and new symptoms of intolerance (diarrhea, vomiting) may be the indication of an unknown individual connection to some orixà. It is through divination that connections between physical symptoms, ingested products and the orixàs are constructed. Allergic reactions may be construed as an ongoing process of production of antipathies in the therapeutic relation. Avoidance of subtances may be assumed to be a specific ritual norm for the intiate, a condition to be respected for a general 'energetic' well-being.
The symptom language of Gulf War Syndrome
This paper argues that biomedicine's view of somatisation is unhelpful in understanding medically unexplained syndromes, by looking specifically at Gulf War Syndrome. I argue that attention needs to be paid to the more collective aspect of symptom and symptom language. Central to this is the way that, as an anthropologist, I look at and interpret individual symptom reporting differently than researchers from other disciplines. Illness symptoms are not only 'biological entities', but can also be conceptualised as a form of communication whereby the individual, having troubles in various areas of life, conveys these in bodily terms. Whereas for other disciplines, the 'reality' of the symptoms is key, for an anthropological interpretation, the most important issue is the fact that people talk about them. Of central importance is what symptom reporting is conveying, rather than focusing on uncovering the objective truth of them. For example, the symptoms Burning Semen Syndrome, impotence and infertility, have all become entwined with GWS narratives and become powerful markers of it and, thus, are clearly communicating something meaningful, yet these symptoms are unlikely to be picked up by epidemiological and medical inquiry. The body is a site of angst and resistance. I argue that GWS can be interpreted as the expression of a collective social angst and is a kind of shared bodily language, an expression of social distress as well as a form of commentary. It is both personal and social.
Tamil refugee's illnesses: somatization or 'expressive signs' of social experiences?
Studies on refugees' illness tend to focus on the dramas of war, losses and trauma. This paper aims to shed light on questions of health and well-being among Tamil refugees who have resettled in a fishing village along the arctic coast of Norway. Many of the Tamils tend to visit the local health care center with what the physicians refers to as "diffuse aches and pains", and which they find difficult to diagnose and treat. As biomedical approaches seem insufficient in explaining these pains, this study introduces perspectives that include an understanding of health as embedded in social relations and cultural values. Rather than looking at illness as somatization and symptoms of physiological or psychological malfunctions, this paper suggests an understanding that allow an active, perceptive body and view the self as an orienting point of "being in the world". Tamils illnesses are proposed rather as "expressive signs" that refer to a challenge and collapse in habituated patterns for constituting meaning and social practices. Data was generated during two different fieldwork periods: between 1996 and 1999 the author did shorter field visits in the region and conducted in-depth interviews and participant observation amongst Tamils and local health care workers, including observing health care consultations; between Sept 1999-Sept 2000 intensive fieldwork was undertaken amongst Tamil refugees in a small fishing village.
Anne Sigfrid Grønseth
Dept. of Social Anthropology, NTNU, Dragvoll
7491 Trondheim, Norway