Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia

Abstract

Encountering patients with chronic fatigue syndrome (CFS) or fibromyalgia can cause dilemmas for physicians due to the uncertainty inherent in these illnesses. The aim of this study was to investigate: (1) How physicians in a Swedish sample describe and categorise patients with CFS and fibromyalgia; (2) What the character of CFS and fibromyalgia, with regard to diagnosing, treatment and medical knowledge/aetiology, mean to the physicians in encounters with patients; and (3) Which strategies physicians describe that they use in the encounter with these patients. Semi-structured interviews were carried out with 26 physicians, specialists in various fields who all had some experience of either CFS or fibromyalgia. The results suggest that there is a discrepancy between the ideal role of the physician and reality in the everyday work in interaction with these patients. This may lead to the professional role being questioned. Different strategies are developed to handle the encounters with these patients. The results also illuminate the physician's interpretations of patients in moralising terms. Conditions given the status of illness were regarded, for example, as less serious by the physicians than those with disease status. Scepticism was expressed regarding especially CFS, but also fibromyalgia. Moreover, it is shown how the patients are characterised by the physicians as ambitious, active, illness focused, demanding and medicalising. The patient groups in question do not always gain full access to the sick-role, in part as a consequence of the conditions not being defined as diseases.

Introduction

The aim of the article is to discuss three interrelated issues on the basis of an empirical study of physicians’ descriptions of two chronic illnesses, chronic fatigue syndrome (CFS) and fibromyalgia, and their encounters with patients suffering from these conditions. The issues are: (1) How do physicians describe and categorise patients with CFS and fibromyalgia? (2) What does the character of CFS and fibromyalgia, with regard to diagnosing, treatment and medical knowledge/aetiology, mean to the physicians in encounters with patients? (3) Which strategies do physicians describe that they use?

CFS and fibromyalgia are distinguished by great uncertainty regarding aetiology, diagnostics, treatment and prognosis. Women are in the majority among the patients, in particular those diagnosed with fibromyalgia. Both illnesses are criteria diagnoses (Wolfe et al., 1990; Fukuda et al., 1994), fibromyalgia since 1981 (Yunnus, Masi, Calabro, Miller, & Feigenbaum, 1981) and CFS since 1988 (Holmes et al., 1988). There is a partly overlapping symptomatology between the illnesses, which is why they both were included in the study. The diagnosis CFS is connected with symptoms like fatigue and exhaustibility, muscle pain, sore throat, headache, impaired memory, concentration difficulties and sleep disorder (Fukuda et al., 1994) and the fibromyalgia diagnosis with symptoms such as aches, pain, stiffness and feebleness in the muscles, fatigue, headache, swelling, bowel problems, and sleeping difficulties (Wolfe et al., 1990). However, even though both CFS and fibromyalgia are established as criteria diagnoses they have been subject to various interpretations that have shifted during the years. In particular, there is an ongoing debate as to whether the illnesses are organic, sociocultural phenomena or psychiatric disorders. The illnesses are therefore not always regarded as distinct by physicians, and the patients meet a profession that is divided about aetiology (Fitzgibbon, Murphy, O'Shea, & Kelleher, 1997).

Hence, CFS and fibromyalgia can mean ambivalence both in relation to the ideal role of the physician and the ideals of medical science. A discrepancy might thus be created between theory and practice (Becher, 1990). Medical science may also be said to have ideals that may be attributed to the positive scientific approach that is its foundation. Only observable phenomena are then regarded as valid knowledge. Subjective assessments can hinder the adoption of an objective stance (Bryman, 1997). The objective ‘truths’ can therefore be given precedence. A number of researchers (e.g. Toombs, 1993) have claimed that this approach characterises physicians both throughout their training and professional life. They have argued that the professional identity of physicians is created in interaction with others who have this approach and that it is often this that influences physicians’ thoughts and actions in their encounter with the patient. From this perspective it would appear that conditions that can be defined as diseases, i.e. those that are objectively measurable, are legitimate as distinct from those defined as illnesses which are based on the subjective experiences of the patient. Disease may thus be described as a health problem that has its roots in an objectively measurable physiological function disturbance (Eisenberg, 1977; Conrad, 1987). Illness, on the other hand, is a subjective health condition. Knowledge about such a condition can only derive from the patient's statements regarding the body's functioning as opposed to a disease, which can be identified independent of the individual's statements (Eisenberg, 1977; Conrad, 1987).

CFS and fibromyalgia may, thus, primarily be regarded as illnesses as they are characterised by being possible to verify only from the patient's descriptions of his/her problem. Fibromyalgia can be verified ‘objectively’ to a certain extent since the establishing of the diagnosis encompasses identifying tender trigger-points on the patient's body. Of interest in the present study is whether physicians classify CFS and fibromyalgia in terms of disease or illness and what the significance of the classification is in the encounter with patients. On the other hand, it is argued that these types of knowledge are now blurred and indistinct (Banks & Prior, 2001). Of interest here, therefore, is which consequences these classifications have for the physician's assessment of the patient and whether or not the condition is regarded as legitimate. Physicians’ notions about various conditions and descriptions of the sick-role appear to be an area that needs further research, in particular in relation to groups of specific diagnoses and conditions. Therefore, we also discuss physicians’ notions about how sick people behave and ought to behave. According to earlier research there is a risk that patients who do not fit in with physicians’ expectations are typified in negative terms (cf. Najman, Klein, & Munro, 1982; Becker, Geer, Hughes, & Strauss, 1961; Schneider & Conrad, 1981; Conrad & Schneider, 1992). Also, Album (1991) has shown that physicians ascribe fibromyalgia, in relation to other diseases, a relatively low prestige.

There is a body of research on which patient characteristics physicians regard as problematic and about their ways of coping with medical uncertainty in the encounter with the patient. However, these studies do not focus, as does the present one, on any particular diagnostic group, but on problem patients in general (Groves, 1978; Calnan, 1984; Lazare, 1987; Schwenk, 1989; Arborelius, Bremberg, & Timpka, 1991; Gerrity, Earp, & DeVellis, 1992; Sharpe et al., 1994). Uncertainty and those demands that the patient makes on the physician, such as knowledge and understanding, can elicit feelings of insufficiency, helplessness, guilt and frustration (Crutcher & Bass, 1980; Gorlin & Zucker, 1983). These feelings may arise as a consequence of the physician's ideal picture, for example, of being able to solve medical problems and help people, not corresponding with the reality with which they are confronted. This constitutes a challenge to their professional identity.

Intellectualisation, denial, depersonalisation, repression, warding off, avoidance, moralisation, projection and distancing/cutting-off have been described in earlier studies as different psychological defences which physicians can develop in order to master their work (Holm, 1995; Andræ, 1996). Hardesty and Geist (1990) have in a study shown that physicians manage the uncertainties they encounter by portraying themselves in an advantageous way and referring to themselves in the communication with the patient. There are, however, still relatively few studies addressing how physicians perceive and describe their work in relation to CFS (Fitzgibbon et al., 1997; Ho-Yen & McNamara, 1991; Scott, Deary, & Pelosi, 1995; Woodward, Broom, & Legge, 1995) and fibromyalgia (Hellström, Bullington, Karlsson, Lindqvist, & Mattsson, 1998; Tamm & Söderlund, 1994). Scott et al. (1995) found that patients with CFS were seen as being likely to cause the physicians difficult management problems and to take up a lot of time. Fitzgibbon et al. (1997) found that the physicians differed greatly in their management of the patients since they did not have a ‘protocol of care’ to follow and were dissatisfied with the care that they delivered. In addition, Woodward et al. (1995) showed that physicians were restrictive in making the diagnosis CFS due, amongst other things, to medical uncertainty about the condition. In relation to fibromyalgia Hellström et al. (1998) have shown that physicians dislike clinical situations in which they do not feel that they are in control, which according to the authors, is frequently the case with patients with fibromyalgia, as they were governed by biomedical knowledge and looked for biomedical symptoms. On the other hand, a recent study shows that even though biomedical knowledge is primarily used by physicians in defining a condition, this does not necessarily mean that they focus only on biomedical symptoms in the clinical encounter (Banks & Prior, 2001).