It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors
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.
References (54)
- et al.
Patients’ and professionals’ understandings of the causes of chronic painBlame, responsibility and identity protection
Social Science & Medicine
(1997) Complaining about chronic pain
Social Science & Medicine
(1999)Qualitative researchStandards, challenges, and guidelines
Lancet
(2001)Medicine, superstructure and micropolitics
Social Science & Medicine
(1979)- Album, D. (1991). Sykdommers og medisinske spesialiteters prestisje. [The prestige of diseases and medical...
- et al.
What is going on when the general practitioner doesn’t grasp the situation?
Family Practice
(1991) - et al.
Women's narratives in primary care medical encounters
Women & Health
(1995) Reflections on gender, power and discourse
Claiming power in doctor–patient talk
Contemporary Sociology
(2000)- et al.
Doctor-patient negotiation of cultural assumptions
Sociology of Health and Illness
(1985)
Chronic illness and the construction of narratives
Sketch of a psychological phenomenological method
The difficult patientPrevalence, psychopathology, and functional impairment
Journal of General Internal Medicine
Morals also have two genders
Victims or culprits? Reflections on women's behaviour
‘Sex’ at ‘work’. the power and paradox of organisation sexuality
A theoretical model for caring for women with chronic non-malignant pain
Qualitative Health Research
Compliance and the patient's perspectiveControlling symptoms in everyday life
Culture, Medicine, and Psychiatry
Patients, physicians, and red parakeetsnarrative incommensurability
“After a while no one believes you”Real and unreal pain
Gender inequalities in healthAn historical and cultural perspective
“I’ve been crying my way”—qualitative analysis of a group of female patients’ consultation experiences
Family Practice
Heterosexuality as an organizing principle in women's sport
International Review for the Sociology of Sport
InterViews. an introduction to qualitative research interviewing
Metaphors we live by
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