Chronic back pain sufferers—striving for the sick role

doi:10.1016/S0277-9536(03)00130-8

Social Science & Medicine

Volume 57, Issue 11, December 2003, Pages 2243-2252

https://doi.org/10.1016/S0277-9536(03)00130-8 Get rights and content

Abstract

The paper draws on data from a Norwegian online discussion list for back pain sufferers and from open, in-depth interviews with Norwegian back pain sufferers. In both sources, back pain sufferers express a fear that the reality of their pain is being questioned. The paper discusses how these experiences of delegitimation can be understood as a result of the back pain sufferers’ inability to achieve the sick role. Many of these individuals strive and frequently fail to achieve clinical and social characteristics that make up appropriate sickness behaviour. A lack of proof that they are sick, including a lack of medical diagnosis, appropriate health care treatment, and visible disabilities, can lead to accusations, both felt and enacted, of malingering, hypochondria and/or mental illness. This in turn can lead to problems in the achievement and/or legitimisation of sick role benefits such as sick leave and medication. The sick role concept has been criticised as being inappropriate for describing the experiences of the chronically ill. The paper argues that the sick role concept still appears to reflect the expectations of health professionals, the public and the patient himself. The study does not support the view that chronic illness is related to a decreased dependency on the medical profession. Instead, doctors’ inability to offer chronic back pain sufferers a clear diagnosis, explanation, and/or a course of treatment or cure appears not to liberate the patient but rather prolongs his or her dependence on the doctor.

Section snippets

Introduction
I’ve spent years trying to accept that I’m sick. But I accept it every time I get a subsidised prescription and go down and pick up my medicine. And I understand it when I go to the social security office and talk to them and they smile and they’re very friendly so then I figure that they believe me. Because who can see? You wear nice clothes and you get in and out of cars and you walk up a stairs… The thing about sickness, at least about back problems and illnesses like that, because I’m assuming that I’m not alone with this, it's a lot about being believed. I’m happy with the hospital visits. It would be nice to have a system so that those of us who are chronically ill could come once a year. Because then you’ve got a paper saying “you are sick”. It's all very well making us an information brochure, but it's as much a case of making an information brochure for the other four million people in Norway” (Informant 3, Niels, 55-year-old lorry driver).

This study of illness experiences among Norwegian back pain sufferers shows that a common topic of concern is the degree in which ones illness is accepted among health professionals, family and friends and a fear that the reality of ones pain is being questioned. The paper discusses reasons for this fear and also discusses the use of the sick role concept in the study of chronic illness.

Discussion list data

The Norwegian Back Pain Association's website (www.ryggforeningen.no) includes a discussion list where visitors are encouraged to write about themselves, their back pain, and their experiences with treatment. Between January 1998 and January 2001 475 contributions were made to the list. Contributors ask questions and offer each other comfort, advice, and narratives about pain, diagnostic tests, treatment alternatives, welfare benefits, family life and other aspects of life with back pain. These

Findings

Most of the topics that were seen in the discussion list were repeated in the interviews. In the following, these two sources of data are therefore presented together. The source of each quote is clearly identified, however, and throughout the text individuals that have participated in the interviews are referred to as “informants” while individuals that have participated in the discussion list are referred to as “contributors”.

Delegitimation and stigma: back pain as “character blemish”

The back pain sufferers in this study describe a fear that their experience of suffering and the motives for their behaviour are being questioned. These feelings of delegitimation (Kleinman, 1992) have also been described in other studies of back pain sufferers’ experiences in Norway and elsewhere (Walker, Holloway & Sofaer, 1999; Rhodes, McPhillips-Tangum, Markham, & Klenk, 1999; Borkan, Reis, Hermoni, & Biderman, 1995; Åbyholm & Hjortdahl, 1999; Fretland & Holmen, 1990), and are closely tied

Concluding remarks

The view that chronic illness is related to a decreased dependency on the medical profession finds little support in this study. Doctors’ inability to offer chronic back pain sufferers a clear diagnosis, explanation, and/or a course of treatment or cure appears not to liberate the patient but rather prolongs his or her dependence on the doctor.

As long as the doctor serves as gatekeeper not only to health care, but also directly and indirectly to social acceptance and financial benefits, the

Acknowledgements

The author wishes to thank Simon Innvaer for his assistance in the data analysis.

This project was financed with the aid of EXTRA funds from the Norwegian Foundation for Health and Rehabilitation.

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View full text

Chronic back pain sufferers—striving for the sick role

Abstract

Section snippets

Discussion list data

Findings

Delegitimation and stigma: back pain as “character blemish”

Concluding remarks

Acknowledgements

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine [Medical Anthropology]

Journal of Pyschosomatic Research

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

Social Science & Medicine

Journal of Pain and Symptom Management

Pain

A bli trodd er det viktigste. En kvalitativ studie av erfaringer med helsevesenet blant pasienter med kroniske ryggsmerter [Being believed is what counts. A qualitative study of experiences with the health service among patients with chronic back pain]

Tidsskrift for den Norske Lœgeforeningen

Korsryggsmerter—folkehelse, trygd og økonomi. [Low back pain—public health, welfare benefits and economy.]

Evaluation of a physician education intervention to improve primary care for low back pain I. Impact on physicians

Spine

Perspectives of women living with schizophrenia

Psychiatric Services

The effects of medical evidence and pain intensity on medical student judgements of chronic pain patients

Journal of Behavioral Medicine

“Sick role” or “empowerment”? The ambiguities of life with an HIV positive diagnosis

Sociology of Health and Illness

Do clerkship experiences affect medical students’ attitudes toward chronically ill patients?

Academic Medicine