Elsevier

Social Science & Medicine

Volume 57, Issue 8, October 2003, Pages 1409-1419
Social Science & Medicine

It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors

https://doi.org/10.1016/S0277-9536(02)00520-8Get rights and content

Abstract

In various studies during the last decade, women with medically unexplained disorders have reported negative experiences during medical encounters. Accounts of being met with scepticism and lack of comprehension, feeling rejected, ignored, and being belittled, blamed for their condition and assigned psychological explanation models are common. Women patients exerted themselves to attract the doctor's medical attention and interest, and were anxious to be considered as whiners or complainers. Here, we explore the nature of “work” done by the patients in order to be believed, understood, and taken seriously when consulting the doctor. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The main outcome measures were descriptions reflecting the patients’ activities or efforts invested in being perceived as a credible patient. We focused on the gendered dimensions of the experiences. The women patients’ accounts indicated hard work to make the symptoms socially visible, real, and physical when consulting a doctor. Their efforts reflect a subtle balance not to appear too strong or too weak, too healthy or too sick, or too smart or too disarranged. Attempting to fit in with normative, biomedical expectations of correctness, they tested strategies such as appropriate assertiveness, surrendering, and appearance. The most important activities or efforts varied. However, the informants were not only struggling for their credibility. Their stories illustrated a struggle for the maintenance of self-esteem or dignity as patients and as women. The material was interpreted within a feminist frame of reference, emphasising the relationship between dignity and shame, power and disempowerment for women patients’ with medically unexplained disorders.

Introduction

During a follow-up study of a group-based treatment programme offered to women with chronic muscular pain, we noticed that the participants often reported negative experiences from previous medical encounters. Studies from the last decade support these findings (Garro, 1992; Jackson, 1992; Johansson, Hamberg, Lindgren, & Westman, 1996; Lilleaas, 1995; Raymond & Brown, 2000; Söderberg, Lundman, & Norberg, 1999; Ware, 1992; Östlund, Cedersund, Alexanderson, & Hensing, 2001; Åsbring & Närvänen, 2002). Accounts of being met with scepticism and lack of comprehension, feeling rejected, ignored, and being belittled, blamed for their condition and assigned psychological explanation models are common. Research indicates that the women patients have exerted themselves to attract the doctor's medical attention and interest, to be believed and taken seriously, and not to be considered as whining and complaining (Garro, 1992; Jackson, 1992; Johansson et al., 1996; Lilleaas, 1995; Ware, 1992). We were interested in how these women manage these challenges in medical encounters.

Medically unexplained disorders, mostly occurring in women, are chronic and disabling conditions, presenting with extensive subjective symptoms, although objective findings or causal explanations are lacking (Malterud, 2000). These disorders challenge medical care and knowledge, because effective methods for diagnostic procedures, treatment, and prevention are lacking (Natvig, Nessiøy, Bruusgaard, & Rutle, 1995). Moreover, conditions classified as medically unexplained, including fibromyalgia, have been attributed low prestige in the cultural medical hierarchy of diseases (Album, 1991).

Doctors find consultations with medical uncertainty, interpersonal difficulties, chronic and so-called unexplained disorders difficult to manage (Hahn et al., 1996; Mathers, Jones, & Hannay, 1995; Reid, Whooley, Crayford, & Hotopf, 2001; Schwenk, Marquez, Lefever, & Cohen, 1989; Sharpe et al., 1994; Steinmetz & Tabenkin, 2001; Wileman, May, & Chew-Graham, 2002). They find it problematic to handle distrust, and to demonstrate their own shortcomings when carrying out medical consultations (Arborelius, Bremberg, & Timpka, 1991; Mathers & Gask, 1995; Hahn et al. (1995), Skelton, Murphy, Murphy, & O’Dowd (1996)).

Behaviour and communication often imply frustration and difficulties in the consultation. Women consult more frequently, they report a higher number of health problems, they often have long-lasting and/or mental symptoms as well as symptoms which are difficult to diagnose (Malterud, 2000). The difficult patient, mostly portrayed as a woman, fits neatly into a historical tradition (Hahn et al. (1996), Johannisson, 1996 (2001)).

The objective of the present study was to explore the nature of “work” done by the patients in order to be believed, understood, and taken seriously when consulting the doctor. We concentrated on the patients’ activities or efforts invested in appearing as a credible patient, and we focused the gendered dimensions of the women's experiences. We intended to explore how pain and illness is shaped in accordance with specific, normative expectations of disease, and how it is dealt with.

Section snippets

Theoretical framework

There is extensive literature on the relationship between doctor and patient. Many of these studies have focused on the doctors’ perspectives on features and management of “difficult consultations” or so-called ‘heartsink’ patients, aiming to help the doctor achieve a greater understanding of, and ability to cope with, these patients (Hahn et al., 1996; Mathers & Gask, 1995; Reid et al., 2001; Schwenk et al., 1989; Sharpe et al., 1994; Steinmetz & Tabenkin, 2001; Wileman et al., 2002). However,

Participants, data collection, and analysis

The empirical data consists of in-depth interviews of 10 women patients with chronic muscular pain. Four of the informants were recruited from a primary health care centre in Oslo, Norway. Six of the informants were recruited among participants from two treatment groups for women patients with chronic muscular pain (see also Steihaug et al. (in press), Steihaug, Ahlsen, & Malterud (2001)). The women had been referred to the treatment programme through local primary care providers. We applied a

Findings

The women patients’ accounts indicated that they had invested much work, time, and energy before or during the encounters in order to be perceived as a credible patient. By trying out various strategies such as appropriate assertiveness, surrendering, and appearance, they attempted to fit in with normative, biomedical expectations of what was “just right”. The most important activities or efforts varied. However, the informants were not only struggling to appear credible. Their stories

The medical encounter described as a legal court case

Lackoff and Johnson (1980) have written about the persuasiveness of metaphors in everyday life, not just in language, but in thought and action as well. The patients in our study use not only a war metaphor, but a legal metaphor as well, in their descriptions of the encounters. They use concepts from a legal court case to label their experiences, activities, and efforts in the consultation. In their reports, the doctor has the role of the enemy or protector of the welfare state rather than

A (heterosexualised) gendered work of dignity—then what?

Medical theory and practice has historically been developed by men and still reflects the hegemony of health disorders; mostly striking men. The women patients’ chronic pain and ill-health behaviour break with normative, biomedical expectations of what illness is and how it should be performed. This makes the medical encounter difficult for both patient and doctor, and these difficulties have gendered dimensions related to dignity and shame, power and disempowerment.

If access to health care and

Acknowledgements

Thanks to Sissel Steihaug, MD, the director of the treatment programme from which this study started. Additional thanks to Lise Widding Isaksen, Ph.D., sociologist who gave valuable advice and comments, and Merete Undeland, MD, who provided helpful suggestions later in the writing process.

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