Elsevier

Social Science & Medicine

Volume 57, Issue 6, September 2003, Pages 1045-1054
Social Science & Medicine

Back pain and the resolution of diagnostic uncertainty in illness narratives

https://doi.org/10.1016/S0277-9536(02)00479-3Get rights and content

Abstract

In this paper I consider 30 Finnish women's written narratives about the process of getting back pain diagnosed. From the beginning of the early discomfort of back pain, the women were sure of its bodily and subjective reality. They struggled repeatedly to be taken seriously, and only after years of medical disparagement did they encounter medical professionals who were able solve the riddle and give it a name, a diagnosis. Since back pain is a baffling problem and challenges the central biomedical epistemology—objective knowledge and measurable findings separate from subjective experience—it allowed the doctors to show a disrespectful attitude toward back pain sufferers.

The moral essence of the women's common story was the stigmatizing experience when doctors did not take subjective pain seriously. Instead, doctors’ neglectful attitudes became part of the prolonged problem. During the long-lasting uncertainty, women tried multiple coping strategies to ease their lives and developed mental attitudes to endure the pain. Since the protagonists did not give up the lived certainty of back pain they were gradually able to challenge medical uncertainty and to demand a thorough medical examination, and/or through random circumstance they encountered doctors who were willing to take their symptoms seriously. This triggered turning points that immediately or very soon resulted in solving the riddle of the puzzling pain. To be finally diagnosed was a great relief. However, to be taken seriously as a person was considered to be the greatest relief.

Introduction

Back pain is a baffling problem for both medical professionals and lay persons because of its ambiguous status between mind and body (Jackson, 2000, p. 144). The many gaps and uncertainties in medical knowledge concerning back pain symptoms, causes, duration, and cure easily complicate and cause tensions in the relations between doctors and back pain sufferers. The interactions become conflicted especially since subjective pain experiences resist verbal description and are difficult to objectively substantiate (Jackson, 2000). The biomedical definition of pain is based on causes of bodily sensations that can be objectively and rationally tested. Consequently, it does not take into account that “each of us is a body and has (i.e., experiences) a body” (Bendelow & Williams, 1995, p. 86), which leads to limited understanding of the complex phenomenon of pain (Jackson, 2000; Baszanger, 1998).

In this paper I discuss how Finnish women experienced initial back pain and the long and uncertain process of getting a name, a medical diagnosis for their discomfort. This process is discussed from the women's point of view, how they retrospectively remembered and interpreted the process of getting a name for their distress and how they made efforts to cope with pain. By telling their own stories they reflect their experience as they see it and as they wish to have others see it (Becker, 1997, p. 25). From this vantage point these narratives have a certain structure because the protagonists knew where to start, and what to exclude and include, all because they knew how the story will end (Mattingly, 1998, p. 38). This allowed the protagonists to frame the “moral of the story” and they assumed a moral responsibility for telling what happened (Mattingly, 2000, p. 185; see also Frank, 1995, p. 137).

In doing so their stories meet two important criteria for significant narratives. First, in the stories the women present themselves as ordinary women in Finnish culture. Second, the violations of the normal expectations for a story line make their stories worth telling, and the women do so in a culturally comprehensive way (Bruner, 2001, pp. 29–30). Thus, the narratives serve as forums for explaining, presenting, and negotiating illness (Hyden, 1997).

Most of the previous literature on back pain experiences has focused on the diagnostic process around chronic back pain (Rhodes, McPhillips-Tangum, Markham, & Klenk, 1999; Kugelmann, 1999; Eccleston, Williams, & Stanton Rogers, 1997; Kleinman, 1988; Murphy & Fisher, 1983). Another angle of the research agenda has focused on living with chronic back pain without a diagnosis (Baszanger (1994), Jackson (2000); Baszanger, 1998; Honkasalo (1998), Honkasalo (1999), Honkasalo, 1998, 1999 (2001); Good, 1994; Morris, 1991; Kleinman, 1988; Hilbert, 1984; Kotarba, 1983). So far not much seems to have been written on the early stages of the diagnostic process before back pain is considered a chronic problem. Thus my question is the following: What does the route from initial symptoms to diagnosis look like?

In this paper I use back pain as the general name for the writers’ discomfort. The majority of the women received a medical diagnosis after two or more years of uncertainty. For a few women the process was fast, lasting only 2–3 months, and a few had to spend a good portion of their lifetimes, 20 or more years, before being diagnosed.

Section snippets

Method

My data were collected in Finland through an autobiographic writing competition called “The Back Bone in Your Life”, organized jointly by the Department of Social Policy at the University of Helsinki and by the Back Pain Society. The writing competition was advertised in February 1999 in leading and local newspapers all around the country. People of all ages were encouraged to write and tell about their past and present experiences of back pain and how it affected their lives.

At the closing

Analytical framework

According to the Ricoeur (1976), Ricoeur (1981) interpretation theory there is an interaction between the explanation and understanding of a text. To explain a narrative is to grasp its skein of movements, the fugue-like structure of interlaced actions (Ricoeur, 1981, p. 156). Explanation is salient in natural sciences. “When there are external facts to be observed, hypotheses to be submitted to empirical verification, general laws for covering such facts, theories to encompass the scattered

The story

The story begins with initial scenes of back pain. This beginning has two versions. In one used by 17 writers, the protagonists present themselves as having experienced back pain already in childhood or adolescence. In the alternative version back pain began in adulthood. These two different time frames could additionally have two different kinds of beginnings. In the first version a sudden and dramatic onset of an illness that interrupted everyday functioning marks a turning point in life and

Discussion

This paper has attempted to show what the route from initial back pain symptoms to diagnosis can be like. It has pictured a moral drama about back pain, experienced as lived certainty and medical uncertainty, from the sufferers’ point of view. The very drama of the story as such is based on the experience of suffering—and a strong desire which sets the story in motion and forces the narrator to reach her goal by overcoming repeated obstacles. The moral of the story features how things turned

Uncited references

Charmaz (2000).

Acknowledgements

I wish to thank Peter Conrad, Marja-Liisa Honkasalo, Catherine Kohler Riessman, Robert Kugelmann, and two anonymous reviewers for their helpful comments on earlier versions of this paper.

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