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Small Research Project

Discussion in 'Lupus News, Awareness and Research' started by jenna.tamminga, Jul 1, 2009.

  1. I am heading a research project at the University of Kent, in Canterbury (UK), and am looking for participants for my research, if you can help at all, or want to offer any feedback at all, I would greatly appreciate it.

    Title: The Conceptualization of the Body and the Anthropology of Autoimmune disorders

    Summary: The aim of this research is to look into how illness, and the experience of sickness (specifically autoimmune disorders, where it is the body attacking itself) can offer insight into understanding the “mindful body” (Scheper-Hughes & Lock 1987). What sorts of symptoms are experienced, and how are they articulated? The body can be seen as a natural symbol in the western society, it provides us with our richest sources of metaphors when dealing with health (including that of a healthy society). ‘Body image’ as the communal and personal representations about the body is in direct relation to the environment, including both internal and external perceptions.

    Statement of Problem:
    One Latin proverb pronounces that “illness shows us what we are”, this can be seen in ethno-anatomical perceptions, which give rich ethnographic material on the social and cultural aspects of being human, on health and ill health, and on the social experiences that we are believed to have. Combining medical anthropology and current anthropological research Scheper-Hughes and Lock (1987) offer a brief prolegomenon to the three perspectives from which the body can be viewed; the individual body, the social body, and the body politic. The “assumption of the body as simultaneously a physical and symbolic artifact, as both naturally and culturally produced, and as securely anchored in a particular historical moment” (Scheper-Hughes & Lock 1987:7) must be taken into account when analyzing the anthropology of illness. There has been anthropological work on the relationship between patients’ choice of symptoms and the conceptions of body image, where an examination of social dimensions and collective representations of body imagery are important aspects in the illness experience (Kleinman 1980, Fisher & Cleveland 1958, & Scheper-Hughes 1984).
    Merriam-Webster’s Medical dictionary cites autoimmune disorders as conditions in which the immune system mistakenly attacks and destroys healthy body tissue (2002). “The ways in which the body is received and experienced in health and sickness are, of course, highly variable” (Scheper-Hughes & Lock 1987:7), especially in regards to autoimmune disorders where the body is perceived to be attacking itself, it is a highly personalized experience. In light of what has been noted above, I would like to explore illness as a social and biological fact, highlight how symptoms can be seen as a language of distress, and attempt to show that illness meanings can be unstable, negotiated as well as contested. This shall be explored in context of Scheper-Hughes and Lock’s (1987) three bodily perspectives: the individual body (the phenomenological sense of the lived experience), the social body (the representational uses of the body as a symbol), and the body politic (the regulation, surveillance, and control).

    Key Analytical Aspects:
    • What are the relationships between the patients’ choice of symptoms and their conceptions of body image?
    • Examine the social aspects and communal depictions of body imagery.
    • How does the individual cope with the illness?
    o Are they involved in support groups?
    o What sorts of medical treatment are they seeking?
    • Examine the “somatization” of the personal, public, and cultural complaints and disorders of the disease.

    “The I in illness is isolation, and the crucial letters in wellness are we” (Author Unknown).
    Typically, the immune system can discern between “self” and “not self” and attacks only those tissues that it recognizes as “not self”. This is frequently the preferred reaction, but not always. Autoimmune disorders are diseases produced by the body making an inappropriate immune reaction hostile to its own tissues (American Association for Clinical Chemistry 2009). The immune system will stop identifying one or more of the body’s normal parts as “self” and will create ‘autoantibodies’, which attack its own cells and systems. Systematic lupus erythematosus (SLE) is an inflammatory autoimmune disease of unspecified etiology, and is characterized by a broad variety of symptoms (Herrmann, Voll & Kalden 2000, Rudich & Zerman 2008, Olowu 2007, Hansen, Heipe, & Dorner 2007). SLE can be triggered by numerous means and can present itself in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis or multiple sclerosis. Although SLE affects many organs some of the more common symptoms are extreme fatigue, joint pain, the destruction of vital organs, as well as muscle aches (The Lupus Site 2009). Symptoms of SLE can appear and wane with time, and they vary from person to person. Symptoms of SLE can intensify with flare-ups, but these can clear up. Flare-ups may be triggered by changes in the patient’s health status, such as physical or emotional stressors and/or by outside stimulants.
    SLE is not a commonly discussed disease, although it has been said that it is more common that leukemia, muscular dystrophy, and multiple sclerosis. It is estimated that 30,000-50,000 people in the United Kingdom have SLE, of which 90% of its sufferers are female (Lupus UK 2005).

    Literature Review:
    The foundations of medical anthropology are numerous, but some of the most influential sources are the physical anthropologist’s research in evolution, adaptation and other spheres, the ethnographic curiosity in witchcraft and magic, the partnership of anthropologists and psychologists during the wartime period, and finally the international public health movement that occurred after World War II (Foster & Anderson 1978). Following from World War II, the study of ‘popular and modern medicine’ became an important area of research, with comparisons between modern biomedicine used in the western world and the ethno-medicine beginning to dominate the medical anthropology sphere (Bendix 1967, Foster & Anderson 1978, Press 1978, & Simmons 1955). History, time, and processes within societies have often been combined into one overarching category; however writings from Evans-Pritchard have drawn attention to the unity of anthropology and history when discussing social orders, and these social orders cannot be analyzed without knowledge concerning its ‘internal dynamics’ (Comaroff & Comaroff 1992). Put simply all societies are involved in processes with multiple components, elements which create a social environment, and these components engage human actors and different agencies in a dialectical relationship (Comaroff & Comaroff 1992). Ethno-medicine and disease etiologies acknowledge and incorporate input from various sources, including “economic, familial, ritual, moral and other institutional sectors” (Press 1978:71), whereas the modern (biomedicine) can be seen as a “closed system, ‘based on precisely defined knowledge, technique and procedures, all of which are discontinuous from ordinary social process’”(Press 1978:71).
    “Human life cannot be studied without taking into account both how individuals are situated within and constrained by social structures and how those individuals construct an understanding of and impose meaning on the world around them” (Dressler 2001:455). Explanatory models of illness (EM) are a set of beliefs which provide people with ways of thinking about modes of and models for reality, they create order and meaning; this set of beliefs is constructed not by a culture, but by individuals (Young 1982). Sickness can be seen as a process through which disease is given socially identifiable meanings (Crandon 1983, Young 1982, Foulks 1978).
    The way in which people describe their social world through medicine is a reflection of political and economic realities of the time; it shows the meaning of ethnic relations (Crandon 1986). Cultural identity can affect directly the type of illness believed to have (Crandon 1983 , Last 1990, Press 1978, Simmons 1955 and others), and thus affects the type of treatment that people are seeking. The medicinal system utilized can become a cultural domain from which people negotiate their identity, “medical ideology is a particularly powerful instrument through which certain kinds of negotiation take place; specifically those pertaining to cultural identity, how people define themselves and others and their own relationships to others” (Crandon 1983 [A]:79).
    There are three main ways that someone seeks treatment: “self-treatment, treatment by a curer, or treatment by medical doctors” (Reeve 2000:102), and these choices are made based upon the gravity of the illness as well as the type of treatment that is required (for either social reasons, or the cause of the illness). Within these methods of treatment, there are areas of overlap and intermingling. Medical systems, while important indicators of political and economic situations, and a dialogue of ethnic relations, should be grappled with not only as systems of thought, but as thought-in-use (Worsley 1982). In short, medical beliefs play an important role in the day-to-day lives; they have historical meaning, influence behaviour, shape ethnic identity, and constitute a dialectical relationship with a vast range of agents.
    The pain that is experienced by individuals is influenced heavily by their personality, social and cultural background, as well as the doctor-patient interaction (Rudich et. al 2008). The way in which the body, illness, and pain are understood is under direct influence of emotions, which is shown in images of the functioning body politic and social body (Lock 1993, Scheper-Hughes & Lock 1987). It has been argued that it is virtually “impossible to rid powerful human experiences of metaphor, of cultural representation (although it is, of course, both possible and in many cases necessary to change the images and meanings of sickness, pain, and suffering)…that the reification of illness (as disease alone) is a form of self-alienation, of false consciousness” (Scheper-Hughes & Lock 1986:138).

    • I hope to attend support groups for individuals with SLE
    • I hope to attain life histories of several individuals with SLE
    • Participant observation will be the primary method, in the support groups
    • Informal and semi structured interviews will be utilized with other individuals
    • With protection of identity of people suffering from these ailments, means that need to be taken (such as aliases, and concealment of location) shall be taken.
    • There will be a provision of a consent form explain the aims and implications of the study to the patients.

    The use of critical ethnography for this project is key in building a better understanding of explore illness as a social and biological fact. Methods used during fieldwork will include a wide variety of anthropological techniques. One of the main methods that will be used is participant observation during support group meetings for people affected with this disorder. Working with these groups I hope to attain more contacts in the Kent and South East England area, in order gauge how individuals in the United Kingdom cope when faced with a chronic illness.
    I have established a few contacts already; mainly friends and family that have been affected with this disease (I plan to increase this network via attending these support group) I hope to conduct a few life history interviews with those previously established contacts. On top of the life histories that I will be conducting I would also like to interview different individuals and possibly groups. With the individual interviews I would like to set up brief meetings so that I can get accustomed to the language and terms that people use and the main issues that they raise, which will then be followed-up on in more in-depth, narrow interviews. For those more in-depth interviews I shall use both semi-structured and other various informal methods. Hopefully, I will be able to interview both individuals affected with SLE, as well as family and friends of people affected with this particular disorder, as they are another insight into the ways in which things are experienced.
    Questions in regards to life histories their limitations, (Crapanzano 1984), prior informal consent from participants and implications that arise (Alexiades and Peluso 2002) methodological question in regards to field notes (Bernard 2005), as well as general fieldwork techniques (Robben and Sluka 2006) will closely taken into account.

    Training and Preparation for Research:
    I have been a student of anthropology for six years, and I hope to draw upon the competence of completing two classes at University level (one Post-grad and one Undergrad) in anthropological methods I hope to draw upon the toolbox given to me. In addition to the methods class that I have completed, I have had training in the field of medical anthropology, which has given me experience in working in the field, in both situations involving health and ideas of health, and in general anthropological knowledge. The completion of a project entitled “I’m lovin’ it” was done in correspondence with the medical anthropology course in 2006, which involved the choices that people in North America make in regards to the food that is being consumed, and how that is affected by the illness and health beliefs prevalent in the society. Drawing upon both field observations in restaurants (McDonalds) as well as using interviews from various informants my study enabled me to look more closely at what it means to eat healthy in the realm of the fast food culture. I also hope to draw upon an experience I had with fieldwork in Pacasmayo, Peru. Completing three months in the field working as both an anthropologist and an archaeologist allowed me to further practice becoming a participant observer whist carrying out structured observations, conducting interviews, constructing the community using archival research, and analytically analyzing narrative data.
    In addition to this I have been building upon my previous training in participant observation and interviews. I have completed several projects involving participant observation as well as interviews, both life history interviews as well as shorter semi-structured interviews. A more thorough grasp of contemporary issues has been explored through coursework at the University of Kent by engaging in various debates in a Contemporary Issues class; as well as by looking at the contemporary issues with research happening in the field by attending a weekly seminar led by other researchers in the field at the moment.

    Contribution to Anthropological Theory and Discipline:
    • The research aims to develop upon previous anthropological works on people’s narratives/interpretations of the illness and experiences of illness.
    • It will further build on Scheper-Hughes & Lock’s concept of ‘The Mindful Body’ by sharing narratives of people suffering from SLE, at a particular place and time in history, which will show both how health care is planned and delivered, as well as the interpretations of the heath care given by the recipients.
    • This research will further contribute information about a topic with very little ethnographic material, and attempts to include narratives of patients into ethnographic data.

    The aim of this research is to further explore the prolegomenon that was put forward by Scheper-Hughes and Lock (1987) as well as Kirmayer’s (1992) work on metaphors presentation and representation in illness experience. The manner in which semantics of symbol can explain the tensions between the supposed senselessness of illness experience and the biomedical assumption of rationality shall be explored in the context of long term chronic illness, whilst taking into account current anthropological debate on perceived concepts of the body.

    Link to survey
  2. Marshmellow

    Marshmellow Registered


    this post has caught my attention as am very interested in your research project although I am not very familiar with Anthropology nor Scheper-Hughes & Lock “mindful body” (although I have read Evans-Pritchard Witchcraft among the Azande)
    I am a research student of English and my area is the use of metaphor to conceptualise illness and the ideology metaphor usage reflects. Maybe we could be of use to each other????????

  3. Lily

    Lily Registered


    Could you elaborate on what you mean by:

  4. BigSis

    BigSis Registered

    Can I echo Lily's could you explain the phrase 'choice of symptoms?'
  5. Lily

    Lily Registered

    ?? Still waiting for clarification..............
  6. Sorry for the delay in clarification on these items. But I will try my best to explain what I am talking about here.

    One of the premises that has been guiding clinical medicine and most science is a commitment to fundamental oppositions (for example between spirit and matter, or even the "real and unreal"). The Cartesian legacy has left a mechanistic conception of the body and its functions, but it has also failed to conceptualize a 'mindful' causation of somatic [of or relating to the body] states. What has happened with this, is human afflictions are either in the mind or in the body. For example, pain (in a case of chronic pain) is always either mental or physical, biological or psycho-social, but never ever is it both, and its never something in between.

    I am, at this point, attempting to view humans and the experience of illness and suffering from an integrative perspective, but find that the current vocabulary that is available for me to use limiting, as there is nothing there at the moment to express various mind-body-society interactions.

    To clarify • Examine the “somatization” of the personal, public, and cultural complaints and disorders of the disease.
    Somatization is the production of recurrent and multiple medical symptoms with no discernible cause. I put somatization in quotations because these are symptoms that are felt, and are sometimes known what to be on the personal level (they have a cause). What I would like to do, is take the three different view points (personal, public, and cultural) and compare them. As what an individual feels, what a person outside the situation, and what a doctor (my cultural perspective) might be three very different perspectives, and at times they might cross interject.

    What I meant by "choice of symptoms" is what you feel like you can express in the vocabulary that is prescribed in the medical terms. This is not something that is going to be easy to get through, as I am not sure how I want to approach this point. I am referring heavily on Scheper-Hughes and Lock's idea on this one, which is best explained
    "We are forced to resort to such fragmented concepts as the bio-social, the psycho-somatic, the somato-social as altogether feeble ways of expressing the myriad ways in which the mind speaks through the body..." p. 10

    I hope this manages to clear some of the issues up, again, if I am not making much sense in this reply, just let me know. :)
  7. BigSis

    BigSis Registered

    This may come across as a bit of a ramble but I am truly interested in what I think you are trying to express though again I wonder if your premise is a bit muddled.

    Most lupies' hackles will rise at the disease being described as somataform or psychsomatic. This is because many of us have spent years of being passed off by doctors as being anxious or hypochondriacal before diagnosis.
    I don't believe this is because we have an illness with no discernable
    cause, but because we have an illness were medical ignorance is rife. Also I feel because the vast majority of sufferers are female there is a tendancy for the medics to write us of as hysterical. This incidentally, would make a good subject for a feminological inquiry in case someone else is looking for a research project.:)
    By choice of symptoms do you mean the ones we choose to verbalise or the ones we feel able to verbalise in existing vocabulary?

    I am really interested to see what others feel here.
  8. Jencg

    Jencg Registered


    I was just going to post a reply to Jenna and I am so glad I read your response first. You have verbalised exactly what I was thinking.

    It has taken years for me and many other sufferers to reach diagnosis stage and I think it is understandable to feel the hackles rise.

    I agree totally with your post.

  9. Lily

    Lily Registered


    Your aim is still not very clear I'm afraid.

    We rely heavily on our doctors (hence the need for good ones who are very knowledgeable on the subject and have years of experience dealing with Lupus patients, i.e. able to relate to them. ) A consultation is usually a matter of relating what we feel (i.e. our symptoms) and their expertise in working out exactly what that means as far as how well our disease is controlled, which organ/mechanism might be at play and what they can do about it to relieve our suffering. They also have to have a good pharmacological knowledge and experience to establish whether a symptom is the Lupus or one of our meds causing a problem. That's it in a nutshell really.

    There's never any mention of somatization from those doctors who know the disease well. There's always a physical cause, even the so called 'pyschological' ones have a physical cause, i.e. Lupus attacking the central nervous system. This is clearly demonstrated with modern screening tests and pathology.
  10. Merle

    Merle Registered

    Hi Jenna

    It is true that the way a patient perceives his/her symptoms may influence diagnosis outcome - but not necessarily in the ways you suggest. Where an illness consists of multiple symptoms - one generally has to concentrate on those that are most prominent/acute at the time and that can be directly seen/observed by a doctor. The reasoning here is simple to avoid being dismissed by the doctor. Doctors tend to assume that all patients are weak/pathetic individuals who just make a fuss about nothing. Thus, it is useless to go to a gp saying that you are always tired and always seem to be run down and achy.

    Two years ago I appreciated my current symptoms as being essential neurological - vertigo, co-ordination problems, loss of muscle mass etc.. As usual, GPs simply dismissed these clearly visible symptoms as viral/normal although. In view of this, I arranged (without referral) consultations with neurologists. After a succession of highly qualified consultants told me to stop imagining that I was ill - I found one that took the fact that I am a lawyer seriously enough to do an MRI brain scan. He found multiple MS type lesions and eventually diagnosed me first with ADEM and then MS.

    A year later, these same symptoms (together with joint pain, rashes, vascular bruits, polycystic ovaries, swollen glands, preeclampsia, pleurisy, Raynauds Syndrome and fatigue - all of which were known to and ignored by the neurologist) led me via a endocrinologist to a rheumatologist and a diagnosis of lupus and probable Hughes Syndrome.

    Thus, my correct diagnosis was down (a) to my self belief and scientific background, and (b) persistence and a chance consultation with the correct specialist - a rheumatologist.

    it is now clear that I have probably had lupus at least since I was 4 years old when I was in hospital for suspected rheumatic fever and that my life of over the next 50 years is a catalogue of misdiagnosis / lack of diagnosis - despite plenty evidence. In my 20's - when a gland biopsy failed to detect the suspected Hodgkin's lymphoma - I was told by the medical consultant that he thought my hugely swollen glands must be psychosomatic and that he would refer me to a psychiatrist. Idiot!

    So it is not all a one way street. At no point did my description of my symptoms alter although I accept that I did experience some new ones as time went on.

    ...And the great sadness is that just about everyone on this forum has had either similar or worse experiences - and most of us are the lucky ones who have managed to find help through a diagnosis!

  11. Merle

    Merle Registered

    I think the entry for "Somatization disorder" in Wikipedia just about sums up much that has to be recognized by doctors -

    "Somatization disorder (also Briquet's disorder or, in antiquity, hysteria) is a psychiatric diagnosis applied to patients who chronically and persistently complain of varied physical symptoms that have no identifiable physical origin. One common general etiological explanation is that internal psychological conflicts are unconsciously expressed as physical signs. Patients with Somatization Disorder will typically visit many doctors trying to get the treatment they think they need. However, it must be remembered that this behaviour would also occur if the patient has a genuine physical condition that previous physicians have failed to diagnose. The first step for a physician must be to take the patient's claims seriously and consider if their symptoms match any known condition. Somatization disorder not only affects the patient physically; if not treated properly it could escalate enough to affect the patient socially as well. They become very antisocial and it may eventually even go as far as shutting themselves out of society."

    At the end of 1950's I was diagnosed with asthma and told that its cause was psychosomatic and therefore entirely under my control. For the next 20 years I coughed and wheezed every night till I spat blood. It was only when (weighing 8st 3lbs - height 5ft 10ins) I saw a doctor in France who had no preconceptions about my background that I was tested and told that I was severely allergic to feathers and house dust mite. After replacing my feather pillows, I never again had asthma at night.

    So who exactly had the difficulty with illness perception - the patient or the doctor? I know to whom I would alway give the benefit of the doubt - and it's not the doctor!

  12. This discussion on here has been useful as well, in that what people are saying is quite revealing to experiences to each person. From BigSis talking about how since the majority of sufferers are women there is a fear (probably legitimized) that doctors are just brushing many sufferers off as being hysterical.
    Reliance on doctors is something that is to be expected with diseases that surface in such a variety of ways such as Lupus, but what else are people relying on? Word of mouth, friends, family, support sites such as this, support groups where you are meeting in real life, religious support groups? All these things are important to know.
    What sort of symptoms people are experiencing are very individualistic, and how one chooses to voice them is also something up to the individual. Of course the things that can be seen by the doctors, those are the symptoms that are going to be voiced, but the way in which people are doing these things is what I am interested in.
    I know that people are very aware of what is happening in their bodies, and things that are wrong with them. From fatigue, to bone aches, to other things, and on a few occasion I have been on the recieving end of no one believing me that I have been ill, its a terrible experience that I would wish no one to have, though I am fully aware, that it does happen on a fairly regular basis to people with Lupus. I am curious to know how people are dealing with these issues.
    I know there are forums, and I hope to read through a lot of the posts on this website, as they are amazingly helpful. But further thoughts, suggestions or experiences are really helpful.
    I am also interested on doing a few life histories with people, the experiences that they have had. Post or Pre lupus diagnosis.
    Again, all this help is so greatly appreciated. Everyones questions, insights and comments have been extremely helpful, and I cannot express my thanks enough.
  13. I have created an online survey for people to fill out, if they can. It would greatly appreciate it. I cannot post links as of yet, as I have not posted enough on the site, hopefully I can post it soon, so that you can just link to the survey.

    Thanks all for your time
  14. Joanne

    Joanne Administrator

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