‘I am not the kind of woman who complains of everything’: Illness stories on self and shame in women with chronic pain

doi:10.1016/j.socscimed.2003.12.001

Social Science & Medicine

Volume 59, Issue 5, September 2004, Pages 1035-1045

https://doi.org/10.1016/j.socscimed.2003.12.001 Get rights and content

Abstract

In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. 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 women described themselves in various ways as ‘strong’, and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the scepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in ‘storied form’ according to a gendered work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.

Introduction

Chronic illness has been looked upon as biographical (Bury, 1982) or continual (Honkasalo, 2001) disruption of a person's ongoing life, touching the individual's sense of self or even causing a loss of self (Charmaz, 1983; Eccleston, Williams, & Rogers, 1997; Lillrank, 2003; Woodward, Broom, & Legge, 1995; Åsbring, 2001). They struggle to find identity and meaning; to reconstruct their personal life histories.

In various studies during the last decade, woman with chronic muscular pain such as fibromyalgia, and chronic fatigue syndrome have reported negative experiences during medical encounters: They repeatedly find themselves being questioned and judged either to be not ill, suffering from an imaginary illness or given a psychiatric label (Garro, 1992; Jackson, 1992; Johansson, Hamberg, Lindgren, & Westman, 1996; Lilleaas, 1995; Lillrank, 2003; Ware, 1992; Åsbring & Närvänen, 2002).

When we previously examined the nature of ‘work’ done by 10 women with chronic muscular pain in order to be believed, understood, and taken seriously in medical consultations, we found they were not only struggling for their credibility: Their stories illustrated how they struggled for self-esteem or dignity as patients and as women (Werner & Malterud, 2003). Several studies support that illness is experienced as a moral event, concerning shame and blame, responsibility and stigmatisation: The patients strive to legitimize their chronic illness and to achieve a sick role (Eccleston et al., 1997; Glenton, 2003; Good, 1994; Jackson, 1992; Lillrank, 2003; Kugelmann, 1999; Ware, 1992; Åsbring & Närvänen, 2002).

We were interested in how these women managed challenges to identity caused by disruptions of life and personal identity, and deligitimation of illness. The objective of the present study was to explore issues of self and shame in illness accounts from women with chronic pain, focusing on the impact of cultural discourses of gender and disease. We concentrated on which purposes the stories served for the narrators, and which larger structures organized their accounts.

Section snippets

From focus on the told/experience to the storytelling/narrative

‘Reality is not something out in the universe to be discovered, but rather is contingent upon people who construct it,’ Scheurich (2000, p. 461) writes. Thus, what is said in the interview or answered in surveys cannot be treated unproblematically as a direct expression of the true or private self (Miczo, 2003).

Initial studies of the illness experience explored the patients’ ‘subjectivity’ and the meanings that individuals gave to their illness experience through for example metaphors and

The constructed illness story and the participants

Linda's story, presented initially, is drawn from qualitative interviews with 10 women with chronic muscular pain. We applied a purposeful sampling of 10 women of varying ages, backgrounds, medical history, and experiences. They were 26–58 years (average age $4212$ years); one in her twenties and three from the next three decades of age (i.e. thirties, forties, and fifties). All except one, who was an Asian immigrant, were Norwegian. Five of the informants were living in marital relationships.

Findings: (Telling) stories about strength

A common feature of many of the illness stories of the women are descriptions of their own strength (both physical, mental, and emotional) and a negative attitude to the talk of illness as ‘whining and complaining’. Their presentation of strength in spite of illness seems to contrast with their accounts of disabilities, which often limited their ability to participate in social and work activities, and practical everyday life. Thus, there are some apparently paradoxical contradictions in the

Gendered plots, performances, and arguments on the cultures of complaint

In narrative research, the focus is on how people talk about past and present events, and not only on what is said. What characterizes the oral narrative is that both narrator and listener are active participants in the creation of an emplotment, i.e. the activity of a reader of a story who engages imaginatively in making sense of the story (Good, 1994; Mattingly, 1994): Both are looking for a way to understand and articulate the illness (events) as a meaningful whole. Frank (2000) has defended

Whispering voices

Let us finally move beyond the story levels of the idealized version or the continuing work of maintaining a positive self-image (Ochberg, 1994; Riessman, 1990); beyond psychological explanations of the assumed benefits of narrative constructions (Miczo, 2003). Then what can we learn from these and other stories in our material about the context of the matter under investigation? Which discourses of illness and gender do the women draw upon when presenting their illness?

Behind the informants’

Acknowledgements

Thanks to Hilde Bondevik, Ph.D. student, who provided helpful suggestions and inspiration, and Kari Nyheim Solbrække, Ph.D. student, and Åse Røthing, Ph.D., for valuable comments while working with the empirical material.

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‘I am not the kind of woman who complains of everything’: Illness stories on self and shame in women with chronic pain

Abstract

Introduction

Section snippets

From focus on the told/experience to the storytelling/narrative

The constructed illness story and the participants

Findings: (Telling) stories about strength

Gendered plots, performances, and arguments on the cultures of complaint

Whispering voices

Acknowledgements

Nære fremmede. Pasientkulturen i sykehus. [Close strangers. Patient culture in hospital.]

Chronic illness as biographical disruption

Sociology of Health and Illness

Loss of selfA fundamental form of suffering in the chronically ill

Sociology of Health and Illness

Implicit meanings. Selected essays in anthropology

Patients’ and professionals’ understandings of the causes of chronic painBlame, responsibility and identity protection

Social Science & Medicine

Somatization reconsideredIncorporating the patient's experiences of illness

Archives of Internal Medicine

Somatization and fashionable diagnosisIllness as a way of life

Scandinavian Journal of work, Environment & Health

The wounded storyteller. Body, illness, and ethics

The standpoint of storyteller

Qualitative Health Research

Chronic illness and the construction of narratives

Sketch of a psychological phenomenological method

Chronic back pain suffers—striving for the sick role

Social Science & Medicine

Medicine, rationality, and experienceAn anthropological perspective

Morals also have two genders

Vicissitudes of pain and sufferingChronic pain and liminality

Medical Anthroplology

Illness and narrative

Sociology of Health and Illness,

After a while no one believes youReal 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

Interviews. An introduction to qualitative research interviewing

Complaining about chronic pain

Social Science & Medicine