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Chronic back pain sufferers—striving for the sick role
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Social Science & Medicine 57 (2003) 2243–2252
Chronic back pain sufferers—striving for the sick role Claire Glenton* Department of Health Services Research, Norwegian Directorate for Health and Social Welfare, PO Box 8054, N-0031 Oslo, Norway
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. r 2003 Elsevier Science Ltd. All rights reserved. Keywords: Back pain; Chronic illness; Sick role; Norway
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 stairsy 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 *Tel.: +47-24-16-32-90; fax: +47-24-16-30-11. E-mail address: [email protected] (C. Glenton).
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, 55year-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. Back pain in Norway Back pain affects around 15% of the adult population in Norway at any given time and is the most common cause of long-term sick leave and disability pension (Brage, 2000). For most, the pain will pass after a short period of time, but for some, the pain will become
0277-9536/03/$ - see front matter r 2003 Elsevier Science Ltd. All rights reserved. doi:10.1016/S0277-9536(03)00130-8
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chronic. Among the Norwegian working population it is estimated that 15% of those on sick leave for more than 2 weeks due to low back pain will not have returned to work after six months. After 1 year, 6% of the original group will not have returned to work (Hagen & Thune, 1998). The cause of back pain is often unclear. Most back pain sufferers have no visible damage to the back, and there is usually no connection to any serious disease. Nor is there any clear cure. Sufferers may often see a number of different health care providers including physiotherapists, chiropractors, manual therapists, acupuncturists, GPs, and sometimes specialists, policlinics, hospitals and rehabilitation units. Treatment is not well coordinated, and patients are often given conflicting advice (Brage & Gihle, 2001). Background of the study In an attempt to support informed choice and shared decision making among Norwegian back pain sufferers, an information service was planned in collaboration with the Norwegian Back Pain Association and the Norwegian Directorate for Health and Social Welfare. As a basis for the information service, a study of illness experiences was carried out with the primary goal of identifying information needs among this group, the results of which have been reported elsewhere (Glenton, 2002). As is often the case in qualitative research, topics were identified that were central to the experiences of the individuals being studied but that were not directly tied to the original focus of the research. The back pain sufferers in this study expressed fears that their surroundings questioned the reality of their pain and suspected them of being malingerers, hypochondriacs, or mentally ill. The frequency and sometimes the urgency of these comments led to an expansion of the original study focus as well as a search for a new set of concepts with which to describe this phenomenon. While the original aim of the research project, the identification of information needs, was guided by the concepts of ‘‘shared decision-making’’, ‘‘informed choice’’, and ‘‘patient empowerment’’, it became clear that these concepts were not sufficient when trying to capture and explain these additional topics. Instead, we returned to the 50-year old concept of the sick role to find an adequate tool with which to analyse the back pain sufferers’ fears and experiences of disbelief. The concept of the sick role The degree to which a person’s experience of illness is accepted by his or her surroundings is tied to the degree in which this illness experience is transformed into
sickness, that is, the degree in which it becomes socially meaningful (Frankenberg, 1980). Individuals who experience bodily suffering but who fail to gain acceptance for this suffering find themselves with illness but without sickness and can be described as inhabiting a liminal space (Dumit, 1998), being both well and sick, and being neither. Experiences of delegitimation and stigmatisation may follow. While ‘‘enacted stigma’’ refers to actual discrimination of the individual, felt stigma refers to the fear of such discrimination. Both types can ‘‘lower the sufferer’s self esteem, creating the inner sense of being discredited or discreditable, which over time spoils his or her identity’’ (Kleinman et al., 1995). How, then, can sickness be achieved? The sick role concept was first developed by Parsons in the 1950s (Parsons, 1951). To achieve the sick role is to achieve recognition of ones suffering and is also a social license to be exempt from particular duties for a given period of time. This exemption requires legitimation by and to the various persons and arenas involved. In Western society, a key player in the legitimation of illness is the medical doctor, a gatekeeper function that is justified with reference to the medical profession’s ability to identify objective biological or pathological findings, that is, signs of disease. The sick individual is not expected to get well by an act of decision alone, but is exempted from responsibility for his or her condition and must be looked after. In return, he or she is expected to display a visible attempt to get well, including a desire to cooperate with those seen as appropriate and competent (Parsons, 1951). The sick role concept has been discussed and criticised many times since its emergence and is seen as particularly inappropriate for chronic illness. The concept, it is argued, is based on an ‘‘acute’’ medical model of sickness (Crossley, 1998), where sickness is characteristically time-constricted, responsive to treatment, and related to physical rather than mental health (Segall, 1976). In this acute model, the doctor–patient relationship is central, but for long-term illnesses, and particularly for chronic illnesses such as back pain where doctors have little ‘‘biomedical’’ insight to offer, the doctor–patient relationship is seen as far less important: ‘‘In the absence of a course of treatment or cure, the physician’s role may become largely redundant, with a related decrease in patient dependency’’ (Crossley, 1998). In this approach, ‘‘the authority of professional technical knowledge and competence assumed in Parson’s model’’ (Crossley, 1998) is challenged and the individual’s own ability to master his situation, often through interaction with peers, for instance patient groups, is emphasised. Such an approach reflects a more general shift within qualitative research from the loss and burden of the chronic illness experience to a more optimistic perspective, addressing topics such as courage, empowerment,
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and partnership with health professionals (Thorne & Paterson, 1998). The degree in which this shift reflects a real change in the experiences of the chronically ill, or whether it may misrepresent the complexity of the phenomenon of living with chronic illness has been questioned (Thorne & Paterson, 1998). In the original focus of the present study, the back pain sufferer was viewed as a potential information seeker, a focus that fits well with current trends as it highlights the individual’s attempt to play an active part in his or her health care. However, the study also brought forward other aspects of life with chronic illness, particularly the vulnerability of those who struggle to achieve acceptance for their pain. In the following, I argue that while the expectations and demands of the sick role are indeed ill suited for people living with chronic back pain, the sick role concept still appears to reflect the social obligations and expectations that are present in the minds of health professionals, colleagues, family members, and back pain sufferers themselves. The paper discusses how experiences of delegitimation and stigma among chronic back pain sufferers are tied to their inability to produce a particular set of both clinical and social characteristics that make up appropriate sickness behaviour and achievement of the sick role.
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coding each contribution. These codes were then compared, discussed, and merged. As the original focus of the study was to identify information needs and barriers, the data was coded according to information needs, themes that could be seen to influence these needs, and barriers to information. While the degree in which the reality of ones back pain was being questioned was not directly tied to a felt need for information, this topic was quickly identified as an important aspect of living with back pain, and coding was expanded to include this category. Interview 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 contributions vary from a few sentences to half a page in length. Some contributions receive a number of responses, while others are left unanswered. While some contributors use their full names, others make use of nicknames or are completely anonymous. Based on these names, it appears that about 200 different people wrote the 475 contributions and that about half of these were men. Several contributors are regular guests and a majority of the guests appear to be chronic back pain sufferers. A few are carers of back pain sufferers.
In addition to the discussion list contributions, open, in-depth interviews of back pain sufferers were carried out. One GP, one chiropractor, two hospital doctors and one physiotherapist were asked to refer us to patients with chronic or acute low back pain with and without radiation. Back pain sufferers and carers were also contacted through the Norwegian Back Pain Association. Nineteen people agreed to be included in the study, ten of which had been referred to us by the Back Pain Association, five by the hospital doctors, two by the chiropractor, and two by the physiotherapist. No informants were referred to us by the GP. Most informants had several years of experience with back problems and should be defined as chronic back pain sufferers. Five of the informants were close family members of chronic back pain sufferers, and one of these was also a back pain sufferer himself. The informants were between 24 and 65 years old, included as many women as men, and lived mainly in or around Oslo. The author carried out open, in-depth interviews using the principles for qualitative interview technique as described by Weiss (1994). Informants were told that the interviewer was a social scientist with no medical background. The interviews took place at the informants’ homes, their place of work, or the interviewer’s office, according to the preferences of the informant. Informants were asked to account their experiences with low back pain from its beginning and until the present day with an emphasis on their information needs during this period. An interview guide was used and continuously developed in response to the interviews. Interviews were taped and lasted between 45 min and 2 h, and were ended when the interviewer or the informant felt that the topics had been exhausted. After the interviews had been transcribed they were analysed in the same manner as with the discussion list contributions.
Data analysis
Use of quotes
The author and one colleague, also a social scientist, carried out content analysis of the data, independently
Quotes from the discussion list and the interviews that are used here have been chosen because they expressed
Data collection Discussion list data
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common experiences, attitudes or topics or because they show the width of experiences seen in this group. The informants have been given fictitious names in order to protect their identity. Ethics Ethical approval for the study was obtained from the local Regional Committee for Medical Research Ethics. Permission to use contents from the discussion list was given by the Norwegian Back Pain Association, but informed consent was not obtained from individual contributors. Since the study was carried out, Eysenbach and Till (2001) have pointed to the ethical problems associated with the waiving of informed consent in the study of internet communities and had the study been carried out today the author would have considered contacting each contributor individually.
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’’. Medical diagnoses as proof of suffering While the identification of objective, physiological signs of disease is central to the legitimisation of illness, a lack of objective physical signs that something is wrong is characteristic for many back pain sufferers, who may often spend shorter or longer periods of time without any diagnosis. The achievement of a medical diagnosis was a common theme both in the discussion list and in the interviews. Diagnoses were seen as important because they could lead to explanations of cause and suggestions for further action, as well as access to welfare benefits and social services. Some of the back pain sufferers associated their lack of diagnosis with their apparent unpopularity as patients: They’re so sick of us ladies who come along with this sort of thing! There are so many of us and they don’t know what to do with us, do they? And we complain and we hurt so much. One doctor has written about me ‘‘she complains so muchy’’ He could have written ‘‘she has so many problems’’ but it was the complaints that were the problem! Of course I was a pretty hopeless case when they couldn’t figure out
what it was. I heard from a friend of mine that her daughter, who’s a doctor, is training to be a radiologist now because she can’t stand all these old women who hurt all over! (Informant 1: Arnhild, 55-year-old teacher.) Equally important was a fear that doctors and others would distrust the back pain sufferers’ motives and question the reality of their pain if no objective signs of their pain were forthcoming. For some, this fear was grounded in first-hand experience: It’s all right for my other son, because he had a slipped disc. But for people like John, when it doesn’t show up on the pictures, that’s when it becomes difficult because you feel like nobody believes you, and that hurts a lot. (At the hospital) they’ve said things like ‘‘I see. You just want to skip school and go to bed, do you?’’ And he never misses school! He got so upset. He phoned home and said, ‘‘Mum, you have to come. I need someone to talk to.’’ He was completely broken. You can lose your self-confidence and your self-esteem and everything when the doctors (talk like that). (Informant 2: Margrethe, 60-year-old housewife and mother of chronic back pain sufferer.) The discussion list is frequently used to exchange information about the different diagnostic tests that are available. Both here and in the interviews, back pain sufferers appear to go to some length to find diagnostic tests that can identify objective signs of disease, both pressing their doctors for tests that have not been carried out as well as identifying and paying privately for tests unavailable to them through the National Health Service: (Thermography) is nice for us who have X-rays that don’t show anything wrong. Because then we can prove that we hurt, and that we’re not just hypochondriacs. Or as my old doctor once said: ‘‘You’re only imagining that you hurt. Would you like to see a psychologist?’’ (Discussion list contributor) In both the interviews and the discussion list, the identification of objective physical signs of disease is often received with relief, and seen as proof to one’s doctor and to one’s social surroundings that one truly is in pain: What’s wrong with you? A bad back? That has to be Norway’s oldest excuse for taking a day off, doesn’t it? I wouldn’t say that anybody suspects me of malingering, but emotionally it’s hard to tell people that your back hurts because there probably are a few malingerers who can make use of it. It was much easier for me when I could throw three slipped discs
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on the table. That’s something people understand much better’’ (Informant 8, Mikkel, 39-year-old consultant). I am a 21-year-old girl who has suffered from back pain for ten years. They have now found a slipped disc with stenosis. I have spent six years not knowing what is wrong with me because they’ve ignored my symptoms. I knew that something was wrong with my back! The worst thing about not having a diagnosis is that a lot of people treat you like a drug addict. I hate those people! People like that don’t know what it means to be in pain. (Discussion list contributor) Psychosocial and psychiatric diagnoses When clinical tests and examinations continue to show nothing, health professionals may turn to psychological or psychosocial models of explanation for their patients’ back pain, but to receive a psychological diagnosis or explanation of one’s problems is a source of despair and frustration in the data: And at the hospital when they couldn’t find anything they sent him to the psychologist, and it was over in fifteen minutes, and he was completely shattered after that. And what it said in his notes, it didn’t make sense at all, not for us who knew him, but he apparently knew him after a quarter of an hour. It seemed like when they didn’t find anything wrong then just to have something to say they sent him to that psychologist. So then it was his head that there was something wrong with and not his back. But it’s things like that that (hurt) so much, you don’t know what to do. And if you ask to go to some other place and the doctors there (get a copy of the) notes, well, everything becomes a mess then.’’ (Informant 2: Margrethe, 60-year-old housewife and mother of chronic back pain sufferer) The sick role concept is based upon an understanding of sickness as physical disease or where there exists a clear division between mental and physical health (Segall, 1976). Psychological diagnoses may therefore weaken the claim to the sick role. In addition, when an illness is seen to be psychological, the question of personal responsibility also arises (Segall, 1976). The division between mental and physical health was also a division that did not correspond to the back pain sufferers’ own experiences. While several of the back pain sufferers were unwilling to accept psychological explanations for their pain, several of them did complain of the psychological problems that they saw as a result of long-term pain. A fear of the stigma attached to mental illness as well as a fear that a psychological diagnosis would lead to a delegitimation of their
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experience of physical pain led some to hide these problems, however: My back is getting on my nerves and I feel sick in general, especially psychologically. I suppose it’s all connected, the physical and the psychological. I certainly don’t dare tell them that I’m having a hard time psychologically now. Then I’ll be diagnosed with mental problems instead of back problems. I’m on my own a lot. I don’t feel like talking to anybody. I don’t think anyone would understand. I’m one of those people who can’t pull myself up. One of the socalled lazy ones. Too lazy to bother? I don’t know anymore. I wonder if I’m so lazy that I can’t do anything more out of life than lie on my back. (Discussion list contributor) Access to health care as proof of suffering The sick individual is expected to display a visible attempt to get well and a desire to co-operate with those seen as appropriate. To be undergoing health care treatment can be seen as such an attempt and is also a visible sign to ones social surroundings that medical approval of one’s suffering has been received. While the back pain sufferers in this study made use of a variety of different health care providers both within and outside of the National Health Service, a lack of effective treatment alternatives implied that these individuals sometimes spent long periods of time without treatment. Several of them expressed a fear that this lack of treatment could be seen as a sign that they were not really trying to get back to work: When you’re not getting any further, you’re just on sick leave, you’re not getting any treatment, nothing’s happening, right? ‘‘Well, how ill are you?’’ I notice from people around me: ‘‘Isn’t anything happening? Aren’t you going to get treatment? What’s happening? Are you just going to lie there?’’ (Informant 8, Mikkel, 39-year-old consultant). Information about different treatment alternatives and how to access them was a common topic on the discussion list, and in an attempt to receive some sort of treatment, time and energy was often used in convincing GPs to refer them to specialists. Access to health care was discussed not only in terms of its effect on the pain. One informant described his stays in hospital as a welcome respite from a constant attempt to convince others of one’s pain: After going in and out of hospital four or five times you become familiar to them. The people who work there know you, and they know that it’s not an act. It’s lovely then. You can allow yourself to be ill then. When you walk around out here you can’t let
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yourself be sick. I can’t anyway. (Informant 3: Niels, 55-year-old lorry driver) Another informant saw her visits to the doctor as an opportunity to receive a confirmation that there really was something wrong: I suppose I use my doctor to tell me that it’s ok that you’re here. Because (y) what you find when you have a bad back is that people can’t see that you’re sick (Informant 4: Jane, 31-year-old warehouse assistant). Visible disabilities and consistent symptoms as proof of suffering While a medical diagnosis and access to health care are important in the achievement of the sick role, ones social surroundings may also require more visible signs of pain. As back pain does not carry with it any such signs, the back pain sufferer’s inability to carry out certain activities is usually the only indication that something is wrong. This was seen as the cause of a number of problems at work and among friends and neighbours and back pain sufferers fear that their social surroundings will display similar reactions of disbelief and delegitimation to their lack of visible disabilities as health professionals. Some of the back pain sufferers described how their attempts to ignore their pain and persevere at work and at home left them with no indication at all of their pain, which again could lead to suspicion, or fear of suspicion: If you’ve broken your arm for instance you can plaster it, but you can’t put a plaster cast on a back! Some people have said to me ‘‘I wouldn’t have guessed that you have a bad back, you walk normally!’’ And at the same time I can feel that I’m not walking normally, I’m pretty stiff but not everybody can see that. And I know that if I do my work my way I can manage quite a bit. (y) It’s not always easy being a back patient. You feel like you’re looked down upon, like you don’t want to do anything. It’s a real problem. My physiotherapist has been a bit frustrated. He said, ‘‘You should go to work and get somebody to put a plaster cast on your arm or your leg. Then they’ll understand! (Informant 7: Frida, 31-year-old assistant nurse) At the hospital it’s easy, you’re allowed to be sick there. But the problem is more when you’re out (y.). It would have been easier to have lost a leg because ‘‘Wow, look at him. He’s lost a leg and he’s out mowing his lawn! He really works hard!’’ And this is something I hear all the time, when you’re sitting at the hospital with the others who really have struggled with their backs, you hear it, that you have a guilty
conscience because you’re ill, you wonder if you’re just a hypochondriac. It hurts, and it can make those negative thoughts come, and you just want to hide.’’ (Informant 3, Niels, 55-year-old lorry driver) Another example of their divergence from the acute model of sickness is the fact that back pain sufferers may experience an inconsistency of symptoms. The problem of having ‘‘up and down days’’ and the fear that this lack of consistency may harm their credibility was referred to a number of times: Don’t let grumpy neighbours who only see you on good days get you down. Who hasn’t heard them say more than once: ‘‘Oh yes, she can paint (or mow the lawn, hang up the clothes) so she can’t be that ill!’’ In other words: social security sneaker. (Discussion list contributor) I have to use crutches now, which actually makes it easier to go out. Everyone is full of pity and curiosity. If you go for a walk on a day when you feel good it can actually arouse suspicion, and I’m not really up to that at the moment. (y). I might not look very sick when I take a little walk and then go straight back to the sofa, but that’s the way it is. (y) I (have to) rise above people’s narrow view of us chronically ill people. We have to be able to have good days in between without feeling guilty about it! (Discussion list contributor) Access to sick role benefits when proof of suffering is not fully achieved When other treatment alternatives are lacking, back pain sufferers are often offered sick leave and/or pain medication for indefinite periods of time. Both of these alternatives can be seen as benefits tied to the sick role, and the use of such benefits can be problematic for an individual who has failed to achieve or who has only partially achieved this role. Some of the back pain sufferers see this situation as a form of dismissal or a sign of disinterest from their doctors: When they put you on sick leave indefinitely, it feels like ‘‘let’s give him sick leave for six months and then at least he’ll keep his mouth shut and he won’t bother us for a while.’’ (Informant 5: Dag, 47-year-old manager) Several of the discussion list contributions and interviews illustrated a strong scepticism about medication of all kinds. In addition to a fear of side effects and addiction, this scepticism also appeared to be tied to a view of medication as dismissal. In addition, some of the back pain sufferers suspected that their surroundings questioned their right to these benefits and their ‘‘real’’ motives for using them:
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My wife (is) very knowledgeable about medication. But she has a real need to justify her use of medication. It seems like it’s important for people to prove that they’re not addicts, that they’re physically sick, not mentally ill. (Informant 6: Ivar, 43-year-old teacher, married to chronic back pain sufferer) People eat loads of pills for things like high blood pressure but nobody looks down at them. Why should it be such a disgrace to have to use medication? There is nothing so destructive and meaningless as long-term pain. Don’t feel inferior because you have to take painkillers. A lot of people have to eat far more dangerous medication every day just to stay alive (Discussion list contributor). Feelings of worthlessness A lack of treatment alternatives and a fear of being labelled a hypochondriac, mental case or malingerer, can lead to frustration, anger and a feeling of being worthless: We’re put on hold. The experts stay away, both from this discussion list and from the health services. I suppose we’re just not worth the effort, there’s not enough prestige in it for the doctors. I’m at the limit of what I can take psychologically. My thoughts are soon as painful as the pain in my back. It’s bad to feel so inferior in a country with so many resources. (Discussion list contributor) These feelings of worthlessness were very much present in discussion list contributions when the news that national sports hero Bj^rn Daehlie had to undergo back surgery hit the headlines. The operation was not a success and Daehlie was forced to give up his skiing career. Several contributors were clearly hurt by the amount of attention he had received, feeling that this attention highlighted how little their own lives were valued by society. At the same time, contributors saw the failure of Daehlie’s operation as a type of vindication, as proof that back problems were really that difficult to cure: Another long day with endless TV reports about Bj^rn Daehlie’s career and how his back forced him to retire. I am happy to hear that his teammates have stood by him and were with him on this milestone of a day. We feel for him! All the same, they still couldn’t repair his back despite the fact that he was at the front of every queue, that everything that could be done was done, no waiting. Is it any wonder that it’s not that easy for us ordinary mortals to get rid of our back problems? We see that it’s sometimes just not enough that everything and everybody is there
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for you. Sometimes it still goes wrong. Why do I feel that this is some sort of comfort? Because I have agonised and thought back to whether I could at any time have done something to avoid my problems, done something that could have freed me from my back pain. Have I done everything in my power? It could be, it’s very possible, that I have. (Discussion list contributor)
Discussion 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; Abyholm & Hjortdahl, 1999; Fretland & Holmen, 1990), and are closely tied to fears or experiences of stigmatisation. While some diseases may carry stigma because of the physical deformities or traits that characterise them (for instance epilepsy, as described by Kleinman et al., 1995), it is not the physical characteristics of back pain that represent the greatest threat to back pain sufferers’ social status, but a suspicion that the pain does not really exist. Goffman distinguishes between stigma that is associated with a physical deformity and stigma that is associated with character blemishes (Goffman, 1968). Among the character blemishes he describes are weak will, dishonesty, addiction or mental illness, and back pain sufferers in this study fear accusations of all of these traits. The study shows that while the expectations of the sick role are particularly inappropriate for the back pain sufferer, these expectations are still very much present among back pain sufferers and their surroundings. Rather than challenge those concepts about sickness and suffering that appear to be tied to the delegitimation of their experiences, the back pain sufferers in this study try to fit into the system by striving to live up to the expectations of the sick role. To rephrase an expression used by Dumit in his discussion of contestable illnesses, chronic back pain is a sickness you have to fight to get (Dumit, 1998). Disease as medical ‘‘absolution’’ Central in this struggle for the sick role is the achievement of disease. While other patient groups
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may meet the identification of a disease with dismay, and may try to negotiate for another alternative, either because the disease in question has serious implications for the person’s health (Thorne, 1993) or because it is associated with social stigma (Scambler & Hopkins, 1986; Taylor, 2001; Chernomas, Clarke, & Chisholm, 2001), back pain sufferers in this study and elsewhere (Thorne, 1993; Borkan, Reis, Hermoni, & Biderman, 1995; Rhodes et al., 1999) often welcome and encourage positive diagnostic tests and diagnoses, describing them in terms of relief, as vindication and as ‘‘proof’’ of their suffering. Achievement of disease can be seen as medical ‘‘absolution’’ from individual responsibility, one of the expectations of the sick role, and accusations of malingering, hypochondria, or mental illness that may follow when medical proof is lacking all serve to suggest that the responsibility does indeed lie with the individual. Achievement of disease is also central to the achievement and/or legitimisation of other sick role benefits. Back pain sufferers’ need to justify their sick leave and medication use illustrates how the use of sick role benefits by individuals who have not convinced their surroundings of their claim to the sick role can be problematic. While a widespread fear of the side effects of medication has been reported in other studies among the chronically ill (Horne & Weinman, 1999), the use of long-term pain medication is perhaps also made difficult because of attitudes about the use of pain medication as palliative care. Within the acute model of medicine, pain is often viewed as a symptom to observe rather than a complaint to relieve (Ruddick, 1997), and pain relief can be regarded as subordinate to, and even competing with efforts to cure and maintain the life of a patient (Ruddick, 1997; Eccleston, Williams, & Rogers, 1997). While medication and sick leave may be acceptable in acute situations and as part of a strategy towards improvement, use of these strategies over longer periods of time and with no apparent improvement can be interpreted as a sign of weak will, and in the case of medication, as a sign of drug addiction.
Health care as confirmation Access to health care is also central in the achievement of the sick role as it is a visible sign of ones desire to get well and a sign of medical acceptance of ones suffering. The association between medical care and suffering appears to be so strong in Western society that Dumit suggests the following chain of associations: ‘‘If you are suffering, you are in need of medical care. If you can’t get medical care or insurance or disability, then there is an assumption that you probably aren’t really sick and you probably aren’t really suffering’’ (Dumit, 1998).
The back pain sufferers’ descriptions of how they use the consultation as an opportunity to gain confirmation or validation of their suffering is a motive also put forward in a study of repeated medical visits among American back patients (McPhillips-Tangum, Cherkin, Rhodes, & Markham, 1998). In Reid, Ewan and Lowy’s (1991) study of repetitive strain injury patients, they points out that; ‘‘Many doctors seemed not to realise that the women were searching not so much for a diagnosis, but for caring and credibility.’’ An illustration of how health care can represent more than the hope of physical improvement is also seen in Kleinman’s description of Howie, an American back pain sufferer who has undergone three unsuccessful operations but who still views them as important: ‘‘The surgeries have had one clearly positive effect, in Howie’s view. They have created icons of his travail, scars that he can show people, that he can touch himself to assure himself that there is something ‘‘physically wrong’’ with his back. After each of his surgeries, he felt that his family, fellow police officers, and doctors become more sympathetic. As he contemplates yet another major surgical procedure, this latent social function of surgery is a large part of the decision making, since his overall judgement about the surgeries is that they have made things worse.’’ (Kleinman, 1988). In Howie’s case, the treatment also provided him with physical scars. The social advantages of having visible ‘‘proof’’ of suffering is a theme that has been referred to both here and in several other studies (Walker et al., 1999; Rhodes et al., 1999; Joachim & Acorn, 2000). Psychological diagnoses—avoided rather than challenged The frustration among those back pain sufferers who receive psychological or psychosocial diagnoses is also seen in other studies of back pain sufferers (Borkan et al., 1995; Rhodes et al., 1999; Walker et al., 1999). While several of the back pain sufferers in this study see their mental health problems as a side effect of long-term pain, they do not challenge what they assume to be their doctor’s view of the connection between mental health and back pain. Instead, they choose to hide these problems, fearing that openness will lead to a delegitimation of their experience of physical pain. Do doctors delegitimise? Is this delegitimation from doctors real or imagined? Some studies suggest that the acute model is still the dominant model of sickness among today’s medical profession and in medical education (Davis et al., 2001; Geyman & Bliss, 2001). Where medical evidence is
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missing health professionals also appear to give less weight to patients’ self-reported level of pain (Turk, 1996; Tait & Chibnall, 1997; Chibnall, Tait, & Ross, 1997). Other studies have suggested that back pain sufferers in particular are not a popular patient group because of the difficulties involved in diagnosing and treating these patients (Cherkin, Deyo, Berg, Bergman, & Lishner, 1991; Walker et al., 1999; Seers, 1996). A reported unwillingness among doctors to reveal their uncertainty or limitations (Skelton, 1998) may increase this unpopularity. While these factors make co-operation with health professionals difficult, non-compliance may be seen as ‘‘deviance’’ and ‘‘sneakiness’’ by the patient (Kotarba & Seidel, 1984) and failure to improve despite professional treatment and advice can also be interpreted as a result of non-compliance (Skelton, 1998).
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 back pain sufferer must strive to live up to the doctor’s expectations. Possibly, challenges to the medical profession’s definition of back pain sufferers’ status, as has been seen in certain other groups, for instance in the deaf movement, is first possible once a clear medical definition has been achieved and once these benefits are no longer under threat. Aspects of chronic illness such as empowerment and coping are also relevant to the experiences of chronic back pain sufferers. In fact, the discussion list is one such illustration of how individuals with chronic illnesses turn to their peers in order to share knowledge and support. But the chronic back pain sufferer’s continued dependence upon the medical profession to ensure access to necessary social benefits cannot be overlooked. Frankenberg points out that; ‘‘Chronic disease (y) leads clearly to a different and perhaps more complicated way of being sick. It requires a different, longer lasting and more demanding cultural performance.’’ (Frankenberg, 1986). Different concepts are necessary to capture the complexity of chronic back pain as well as other chronic illnesses. And despite the limitations of the sick role concept in describing the realities of chronic back pain, it still appears to describe the expectations of doctors, families, colleagues, and the back pain sufferer himself.
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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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Chronic back pain sufferers—striving for the sick role Claire Glenton* Department of Health Services Research, Norwegian Directorate for Health and Social Welfare, PO Box 8054, N-0031 Oslo, Norway
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. r 2003 Elsevier Science Ltd. All rights reserved. Keywords: Back pain; Chronic illness; Sick role; Norway
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 stairsy 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 *Tel.: +47-24-16-32-90; fax: +47-24-16-30-11. E-mail address: [email protected] (C. Glenton).
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, 55year-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. Back pain in Norway Back pain affects around 15% of the adult population in Norway at any given time and is the most common cause of long-term sick leave and disability pension (Brage, 2000). For most, the pain will pass after a short period of time, but for some, the pain will become
0277-9536/03/$ - see front matter r 2003 Elsevier Science Ltd. All rights reserved. doi:10.1016/S0277-9536(03)00130-8
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chronic. Among the Norwegian working population it is estimated that 15% of those on sick leave for more than 2 weeks due to low back pain will not have returned to work after six months. After 1 year, 6% of the original group will not have returned to work (Hagen & Thune, 1998). The cause of back pain is often unclear. Most back pain sufferers have no visible damage to the back, and there is usually no connection to any serious disease. Nor is there any clear cure. Sufferers may often see a number of different health care providers including physiotherapists, chiropractors, manual therapists, acupuncturists, GPs, and sometimes specialists, policlinics, hospitals and rehabilitation units. Treatment is not well coordinated, and patients are often given conflicting advice (Brage & Gihle, 2001). Background of the study In an attempt to support informed choice and shared decision making among Norwegian back pain sufferers, an information service was planned in collaboration with the Norwegian Back Pain Association and the Norwegian Directorate for Health and Social Welfare. As a basis for the information service, a study of illness experiences was carried out with the primary goal of identifying information needs among this group, the results of which have been reported elsewhere (Glenton, 2002). As is often the case in qualitative research, topics were identified that were central to the experiences of the individuals being studied but that were not directly tied to the original focus of the research. The back pain sufferers in this study expressed fears that their surroundings questioned the reality of their pain and suspected them of being malingerers, hypochondriacs, or mentally ill. The frequency and sometimes the urgency of these comments led to an expansion of the original study focus as well as a search for a new set of concepts with which to describe this phenomenon. While the original aim of the research project, the identification of information needs, was guided by the concepts of ‘‘shared decision-making’’, ‘‘informed choice’’, and ‘‘patient empowerment’’, it became clear that these concepts were not sufficient when trying to capture and explain these additional topics. Instead, we returned to the 50-year old concept of the sick role to find an adequate tool with which to analyse the back pain sufferers’ fears and experiences of disbelief. The concept of the sick role The degree to which a person’s experience of illness is accepted by his or her surroundings is tied to the degree in which this illness experience is transformed into
sickness, that is, the degree in which it becomes socially meaningful (Frankenberg, 1980). Individuals who experience bodily suffering but who fail to gain acceptance for this suffering find themselves with illness but without sickness and can be described as inhabiting a liminal space (Dumit, 1998), being both well and sick, and being neither. Experiences of delegitimation and stigmatisation may follow. While ‘‘enacted stigma’’ refers to actual discrimination of the individual, felt stigma refers to the fear of such discrimination. Both types can ‘‘lower the sufferer’s self esteem, creating the inner sense of being discredited or discreditable, which over time spoils his or her identity’’ (Kleinman et al., 1995). How, then, can sickness be achieved? The sick role concept was first developed by Parsons in the 1950s (Parsons, 1951). To achieve the sick role is to achieve recognition of ones suffering and is also a social license to be exempt from particular duties for a given period of time. This exemption requires legitimation by and to the various persons and arenas involved. In Western society, a key player in the legitimation of illness is the medical doctor, a gatekeeper function that is justified with reference to the medical profession’s ability to identify objective biological or pathological findings, that is, signs of disease. The sick individual is not expected to get well by an act of decision alone, but is exempted from responsibility for his or her condition and must be looked after. In return, he or she is expected to display a visible attempt to get well, including a desire to cooperate with those seen as appropriate and competent (Parsons, 1951). The sick role concept has been discussed and criticised many times since its emergence and is seen as particularly inappropriate for chronic illness. The concept, it is argued, is based on an ‘‘acute’’ medical model of sickness (Crossley, 1998), where sickness is characteristically time-constricted, responsive to treatment, and related to physical rather than mental health (Segall, 1976). In this acute model, the doctor–patient relationship is central, but for long-term illnesses, and particularly for chronic illnesses such as back pain where doctors have little ‘‘biomedical’’ insight to offer, the doctor–patient relationship is seen as far less important: ‘‘In the absence of a course of treatment or cure, the physician’s role may become largely redundant, with a related decrease in patient dependency’’ (Crossley, 1998). In this approach, ‘‘the authority of professional technical knowledge and competence assumed in Parson’s model’’ (Crossley, 1998) is challenged and the individual’s own ability to master his situation, often through interaction with peers, for instance patient groups, is emphasised. Such an approach reflects a more general shift within qualitative research from the loss and burden of the chronic illness experience to a more optimistic perspective, addressing topics such as courage, empowerment,
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and partnership with health professionals (Thorne & Paterson, 1998). The degree in which this shift reflects a real change in the experiences of the chronically ill, or whether it may misrepresent the complexity of the phenomenon of living with chronic illness has been questioned (Thorne & Paterson, 1998). In the original focus of the present study, the back pain sufferer was viewed as a potential information seeker, a focus that fits well with current trends as it highlights the individual’s attempt to play an active part in his or her health care. However, the study also brought forward other aspects of life with chronic illness, particularly the vulnerability of those who struggle to achieve acceptance for their pain. In the following, I argue that while the expectations and demands of the sick role are indeed ill suited for people living with chronic back pain, the sick role concept still appears to reflect the social obligations and expectations that are present in the minds of health professionals, colleagues, family members, and back pain sufferers themselves. The paper discusses how experiences of delegitimation and stigma among chronic back pain sufferers are tied to their inability to produce a particular set of both clinical and social characteristics that make up appropriate sickness behaviour and achievement of the sick role.
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coding each contribution. These codes were then compared, discussed, and merged. As the original focus of the study was to identify information needs and barriers, the data was coded according to information needs, themes that could be seen to influence these needs, and barriers to information. While the degree in which the reality of ones back pain was being questioned was not directly tied to a felt need for information, this topic was quickly identified as an important aspect of living with back pain, and coding was expanded to include this category. Interview 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 contributions vary from a few sentences to half a page in length. Some contributions receive a number of responses, while others are left unanswered. While some contributors use their full names, others make use of nicknames or are completely anonymous. Based on these names, it appears that about 200 different people wrote the 475 contributions and that about half of these were men. Several contributors are regular guests and a majority of the guests appear to be chronic back pain sufferers. A few are carers of back pain sufferers.
In addition to the discussion list contributions, open, in-depth interviews of back pain sufferers were carried out. One GP, one chiropractor, two hospital doctors and one physiotherapist were asked to refer us to patients with chronic or acute low back pain with and without radiation. Back pain sufferers and carers were also contacted through the Norwegian Back Pain Association. Nineteen people agreed to be included in the study, ten of which had been referred to us by the Back Pain Association, five by the hospital doctors, two by the chiropractor, and two by the physiotherapist. No informants were referred to us by the GP. Most informants had several years of experience with back problems and should be defined as chronic back pain sufferers. Five of the informants were close family members of chronic back pain sufferers, and one of these was also a back pain sufferer himself. The informants were between 24 and 65 years old, included as many women as men, and lived mainly in or around Oslo. The author carried out open, in-depth interviews using the principles for qualitative interview technique as described by Weiss (1994). Informants were told that the interviewer was a social scientist with no medical background. The interviews took place at the informants’ homes, their place of work, or the interviewer’s office, according to the preferences of the informant. Informants were asked to account their experiences with low back pain from its beginning and until the present day with an emphasis on their information needs during this period. An interview guide was used and continuously developed in response to the interviews. Interviews were taped and lasted between 45 min and 2 h, and were ended when the interviewer or the informant felt that the topics had been exhausted. After the interviews had been transcribed they were analysed in the same manner as with the discussion list contributions.
Data analysis
Use of quotes
The author and one colleague, also a social scientist, carried out content analysis of the data, independently
Quotes from the discussion list and the interviews that are used here have been chosen because they expressed
Data collection Discussion list data
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common experiences, attitudes or topics or because they show the width of experiences seen in this group. The informants have been given fictitious names in order to protect their identity. Ethics Ethical approval for the study was obtained from the local Regional Committee for Medical Research Ethics. Permission to use contents from the discussion list was given by the Norwegian Back Pain Association, but informed consent was not obtained from individual contributors. Since the study was carried out, Eysenbach and Till (2001) have pointed to the ethical problems associated with the waiving of informed consent in the study of internet communities and had the study been carried out today the author would have considered contacting each contributor individually.
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’’. Medical diagnoses as proof of suffering While the identification of objective, physiological signs of disease is central to the legitimisation of illness, a lack of objective physical signs that something is wrong is characteristic for many back pain sufferers, who may often spend shorter or longer periods of time without any diagnosis. The achievement of a medical diagnosis was a common theme both in the discussion list and in the interviews. Diagnoses were seen as important because they could lead to explanations of cause and suggestions for further action, as well as access to welfare benefits and social services. Some of the back pain sufferers associated their lack of diagnosis with their apparent unpopularity as patients: They’re so sick of us ladies who come along with this sort of thing! There are so many of us and they don’t know what to do with us, do they? And we complain and we hurt so much. One doctor has written about me ‘‘she complains so muchy’’ He could have written ‘‘she has so many problems’’ but it was the complaints that were the problem! Of course I was a pretty hopeless case when they couldn’t figure out
what it was. I heard from a friend of mine that her daughter, who’s a doctor, is training to be a radiologist now because she can’t stand all these old women who hurt all over! (Informant 1: Arnhild, 55-year-old teacher.) Equally important was a fear that doctors and others would distrust the back pain sufferers’ motives and question the reality of their pain if no objective signs of their pain were forthcoming. For some, this fear was grounded in first-hand experience: It’s all right for my other son, because he had a slipped disc. But for people like John, when it doesn’t show up on the pictures, that’s when it becomes difficult because you feel like nobody believes you, and that hurts a lot. (At the hospital) they’ve said things like ‘‘I see. You just want to skip school and go to bed, do you?’’ And he never misses school! He got so upset. He phoned home and said, ‘‘Mum, you have to come. I need someone to talk to.’’ He was completely broken. You can lose your self-confidence and your self-esteem and everything when the doctors (talk like that). (Informant 2: Margrethe, 60-year-old housewife and mother of chronic back pain sufferer.) The discussion list is frequently used to exchange information about the different diagnostic tests that are available. Both here and in the interviews, back pain sufferers appear to go to some length to find diagnostic tests that can identify objective signs of disease, both pressing their doctors for tests that have not been carried out as well as identifying and paying privately for tests unavailable to them through the National Health Service: (Thermography) is nice for us who have X-rays that don’t show anything wrong. Because then we can prove that we hurt, and that we’re not just hypochondriacs. Or as my old doctor once said: ‘‘You’re only imagining that you hurt. Would you like to see a psychologist?’’ (Discussion list contributor) In both the interviews and the discussion list, the identification of objective physical signs of disease is often received with relief, and seen as proof to one’s doctor and to one’s social surroundings that one truly is in pain: What’s wrong with you? A bad back? That has to be Norway’s oldest excuse for taking a day off, doesn’t it? I wouldn’t say that anybody suspects me of malingering, but emotionally it’s hard to tell people that your back hurts because there probably are a few malingerers who can make use of it. It was much easier for me when I could throw three slipped discs
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on the table. That’s something people understand much better’’ (Informant 8, Mikkel, 39-year-old consultant). I am a 21-year-old girl who has suffered from back pain for ten years. They have now found a slipped disc with stenosis. I have spent six years not knowing what is wrong with me because they’ve ignored my symptoms. I knew that something was wrong with my back! The worst thing about not having a diagnosis is that a lot of people treat you like a drug addict. I hate those people! People like that don’t know what it means to be in pain. (Discussion list contributor) Psychosocial and psychiatric diagnoses When clinical tests and examinations continue to show nothing, health professionals may turn to psychological or psychosocial models of explanation for their patients’ back pain, but to receive a psychological diagnosis or explanation of one’s problems is a source of despair and frustration in the data: And at the hospital when they couldn’t find anything they sent him to the psychologist, and it was over in fifteen minutes, and he was completely shattered after that. And what it said in his notes, it didn’t make sense at all, not for us who knew him, but he apparently knew him after a quarter of an hour. It seemed like when they didn’t find anything wrong then just to have something to say they sent him to that psychologist. So then it was his head that there was something wrong with and not his back. But it’s things like that that (hurt) so much, you don’t know what to do. And if you ask to go to some other place and the doctors there (get a copy of the) notes, well, everything becomes a mess then.’’ (Informant 2: Margrethe, 60-year-old housewife and mother of chronic back pain sufferer) The sick role concept is based upon an understanding of sickness as physical disease or where there exists a clear division between mental and physical health (Segall, 1976). Psychological diagnoses may therefore weaken the claim to the sick role. In addition, when an illness is seen to be psychological, the question of personal responsibility also arises (Segall, 1976). The division between mental and physical health was also a division that did not correspond to the back pain sufferers’ own experiences. While several of the back pain sufferers were unwilling to accept psychological explanations for their pain, several of them did complain of the psychological problems that they saw as a result of long-term pain. A fear of the stigma attached to mental illness as well as a fear that a psychological diagnosis would lead to a delegitimation of their
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experience of physical pain led some to hide these problems, however: My back is getting on my nerves and I feel sick in general, especially psychologically. I suppose it’s all connected, the physical and the psychological. I certainly don’t dare tell them that I’m having a hard time psychologically now. Then I’ll be diagnosed with mental problems instead of back problems. I’m on my own a lot. I don’t feel like talking to anybody. I don’t think anyone would understand. I’m one of those people who can’t pull myself up. One of the socalled lazy ones. Too lazy to bother? I don’t know anymore. I wonder if I’m so lazy that I can’t do anything more out of life than lie on my back. (Discussion list contributor) Access to health care as proof of suffering The sick individual is expected to display a visible attempt to get well and a desire to co-operate with those seen as appropriate. To be undergoing health care treatment can be seen as such an attempt and is also a visible sign to ones social surroundings that medical approval of one’s suffering has been received. While the back pain sufferers in this study made use of a variety of different health care providers both within and outside of the National Health Service, a lack of effective treatment alternatives implied that these individuals sometimes spent long periods of time without treatment. Several of them expressed a fear that this lack of treatment could be seen as a sign that they were not really trying to get back to work: When you’re not getting any further, you’re just on sick leave, you’re not getting any treatment, nothing’s happening, right? ‘‘Well, how ill are you?’’ I notice from people around me: ‘‘Isn’t anything happening? Aren’t you going to get treatment? What’s happening? Are you just going to lie there?’’ (Informant 8, Mikkel, 39-year-old consultant). Information about different treatment alternatives and how to access them was a common topic on the discussion list, and in an attempt to receive some sort of treatment, time and energy was often used in convincing GPs to refer them to specialists. Access to health care was discussed not only in terms of its effect on the pain. One informant described his stays in hospital as a welcome respite from a constant attempt to convince others of one’s pain: After going in and out of hospital four or five times you become familiar to them. The people who work there know you, and they know that it’s not an act. It’s lovely then. You can allow yourself to be ill then. When you walk around out here you can’t let
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yourself be sick. I can’t anyway. (Informant 3: Niels, 55-year-old lorry driver) Another informant saw her visits to the doctor as an opportunity to receive a confirmation that there really was something wrong: I suppose I use my doctor to tell me that it’s ok that you’re here. Because (y) what you find when you have a bad back is that people can’t see that you’re sick (Informant 4: Jane, 31-year-old warehouse assistant). Visible disabilities and consistent symptoms as proof of suffering While a medical diagnosis and access to health care are important in the achievement of the sick role, ones social surroundings may also require more visible signs of pain. As back pain does not carry with it any such signs, the back pain sufferer’s inability to carry out certain activities is usually the only indication that something is wrong. This was seen as the cause of a number of problems at work and among friends and neighbours and back pain sufferers fear that their social surroundings will display similar reactions of disbelief and delegitimation to their lack of visible disabilities as health professionals. Some of the back pain sufferers described how their attempts to ignore their pain and persevere at work and at home left them with no indication at all of their pain, which again could lead to suspicion, or fear of suspicion: If you’ve broken your arm for instance you can plaster it, but you can’t put a plaster cast on a back! Some people have said to me ‘‘I wouldn’t have guessed that you have a bad back, you walk normally!’’ And at the same time I can feel that I’m not walking normally, I’m pretty stiff but not everybody can see that. And I know that if I do my work my way I can manage quite a bit. (y) It’s not always easy being a back patient. You feel like you’re looked down upon, like you don’t want to do anything. It’s a real problem. My physiotherapist has been a bit frustrated. He said, ‘‘You should go to work and get somebody to put a plaster cast on your arm or your leg. Then they’ll understand! (Informant 7: Frida, 31-year-old assistant nurse) At the hospital it’s easy, you’re allowed to be sick there. But the problem is more when you’re out (y.). It would have been easier to have lost a leg because ‘‘Wow, look at him. He’s lost a leg and he’s out mowing his lawn! He really works hard!’’ And this is something I hear all the time, when you’re sitting at the hospital with the others who really have struggled with their backs, you hear it, that you have a guilty
conscience because you’re ill, you wonder if you’re just a hypochondriac. It hurts, and it can make those negative thoughts come, and you just want to hide.’’ (Informant 3, Niels, 55-year-old lorry driver) Another example of their divergence from the acute model of sickness is the fact that back pain sufferers may experience an inconsistency of symptoms. The problem of having ‘‘up and down days’’ and the fear that this lack of consistency may harm their credibility was referred to a number of times: Don’t let grumpy neighbours who only see you on good days get you down. Who hasn’t heard them say more than once: ‘‘Oh yes, she can paint (or mow the lawn, hang up the clothes) so she can’t be that ill!’’ In other words: social security sneaker. (Discussion list contributor) I have to use crutches now, which actually makes it easier to go out. Everyone is full of pity and curiosity. If you go for a walk on a day when you feel good it can actually arouse suspicion, and I’m not really up to that at the moment. (y). I might not look very sick when I take a little walk and then go straight back to the sofa, but that’s the way it is. (y) I (have to) rise above people’s narrow view of us chronically ill people. We have to be able to have good days in between without feeling guilty about it! (Discussion list contributor) Access to sick role benefits when proof of suffering is not fully achieved When other treatment alternatives are lacking, back pain sufferers are often offered sick leave and/or pain medication for indefinite periods of time. Both of these alternatives can be seen as benefits tied to the sick role, and the use of such benefits can be problematic for an individual who has failed to achieve or who has only partially achieved this role. Some of the back pain sufferers see this situation as a form of dismissal or a sign of disinterest from their doctors: When they put you on sick leave indefinitely, it feels like ‘‘let’s give him sick leave for six months and then at least he’ll keep his mouth shut and he won’t bother us for a while.’’ (Informant 5: Dag, 47-year-old manager) Several of the discussion list contributions and interviews illustrated a strong scepticism about medication of all kinds. In addition to a fear of side effects and addiction, this scepticism also appeared to be tied to a view of medication as dismissal. In addition, some of the back pain sufferers suspected that their surroundings questioned their right to these benefits and their ‘‘real’’ motives for using them:
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My wife (is) very knowledgeable about medication. But she has a real need to justify her use of medication. It seems like it’s important for people to prove that they’re not addicts, that they’re physically sick, not mentally ill. (Informant 6: Ivar, 43-year-old teacher, married to chronic back pain sufferer) People eat loads of pills for things like high blood pressure but nobody looks down at them. Why should it be such a disgrace to have to use medication? There is nothing so destructive and meaningless as long-term pain. Don’t feel inferior because you have to take painkillers. A lot of people have to eat far more dangerous medication every day just to stay alive (Discussion list contributor). Feelings of worthlessness A lack of treatment alternatives and a fear of being labelled a hypochondriac, mental case or malingerer, can lead to frustration, anger and a feeling of being worthless: We’re put on hold. The experts stay away, both from this discussion list and from the health services. I suppose we’re just not worth the effort, there’s not enough prestige in it for the doctors. I’m at the limit of what I can take psychologically. My thoughts are soon as painful as the pain in my back. It’s bad to feel so inferior in a country with so many resources. (Discussion list contributor) These feelings of worthlessness were very much present in discussion list contributions when the news that national sports hero Bj^rn Daehlie had to undergo back surgery hit the headlines. The operation was not a success and Daehlie was forced to give up his skiing career. Several contributors were clearly hurt by the amount of attention he had received, feeling that this attention highlighted how little their own lives were valued by society. At the same time, contributors saw the failure of Daehlie’s operation as a type of vindication, as proof that back problems were really that difficult to cure: Another long day with endless TV reports about Bj^rn Daehlie’s career and how his back forced him to retire. I am happy to hear that his teammates have stood by him and were with him on this milestone of a day. We feel for him! All the same, they still couldn’t repair his back despite the fact that he was at the front of every queue, that everything that could be done was done, no waiting. Is it any wonder that it’s not that easy for us ordinary mortals to get rid of our back problems? We see that it’s sometimes just not enough that everything and everybody is there
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for you. Sometimes it still goes wrong. Why do I feel that this is some sort of comfort? Because I have agonised and thought back to whether I could at any time have done something to avoid my problems, done something that could have freed me from my back pain. Have I done everything in my power? It could be, it’s very possible, that I have. (Discussion list contributor)
Discussion 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; Abyholm & Hjortdahl, 1999; Fretland & Holmen, 1990), and are closely tied to fears or experiences of stigmatisation. While some diseases may carry stigma because of the physical deformities or traits that characterise them (for instance epilepsy, as described by Kleinman et al., 1995), it is not the physical characteristics of back pain that represent the greatest threat to back pain sufferers’ social status, but a suspicion that the pain does not really exist. Goffman distinguishes between stigma that is associated with a physical deformity and stigma that is associated with character blemishes (Goffman, 1968). Among the character blemishes he describes are weak will, dishonesty, addiction or mental illness, and back pain sufferers in this study fear accusations of all of these traits. The study shows that while the expectations of the sick role are particularly inappropriate for the back pain sufferer, these expectations are still very much present among back pain sufferers and their surroundings. Rather than challenge those concepts about sickness and suffering that appear to be tied to the delegitimation of their experiences, the back pain sufferers in this study try to fit into the system by striving to live up to the expectations of the sick role. To rephrase an expression used by Dumit in his discussion of contestable illnesses, chronic back pain is a sickness you have to fight to get (Dumit, 1998). Disease as medical ‘‘absolution’’ Central in this struggle for the sick role is the achievement of disease. While other patient groups
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may meet the identification of a disease with dismay, and may try to negotiate for another alternative, either because the disease in question has serious implications for the person’s health (Thorne, 1993) or because it is associated with social stigma (Scambler & Hopkins, 1986; Taylor, 2001; Chernomas, Clarke, & Chisholm, 2001), back pain sufferers in this study and elsewhere (Thorne, 1993; Borkan, Reis, Hermoni, & Biderman, 1995; Rhodes et al., 1999) often welcome and encourage positive diagnostic tests and diagnoses, describing them in terms of relief, as vindication and as ‘‘proof’’ of their suffering. Achievement of disease can be seen as medical ‘‘absolution’’ from individual responsibility, one of the expectations of the sick role, and accusations of malingering, hypochondria, or mental illness that may follow when medical proof is lacking all serve to suggest that the responsibility does indeed lie with the individual. Achievement of disease is also central to the achievement and/or legitimisation of other sick role benefits. Back pain sufferers’ need to justify their sick leave and medication use illustrates how the use of sick role benefits by individuals who have not convinced their surroundings of their claim to the sick role can be problematic. While a widespread fear of the side effects of medication has been reported in other studies among the chronically ill (Horne & Weinman, 1999), the use of long-term pain medication is perhaps also made difficult because of attitudes about the use of pain medication as palliative care. Within the acute model of medicine, pain is often viewed as a symptom to observe rather than a complaint to relieve (Ruddick, 1997), and pain relief can be regarded as subordinate to, and even competing with efforts to cure and maintain the life of a patient (Ruddick, 1997; Eccleston, Williams, & Rogers, 1997). While medication and sick leave may be acceptable in acute situations and as part of a strategy towards improvement, use of these strategies over longer periods of time and with no apparent improvement can be interpreted as a sign of weak will, and in the case of medication, as a sign of drug addiction.
Health care as confirmation Access to health care is also central in the achievement of the sick role as it is a visible sign of ones desire to get well and a sign of medical acceptance of ones suffering. The association between medical care and suffering appears to be so strong in Western society that Dumit suggests the following chain of associations: ‘‘If you are suffering, you are in need of medical care. If you can’t get medical care or insurance or disability, then there is an assumption that you probably aren’t really sick and you probably aren’t really suffering’’ (Dumit, 1998).
The back pain sufferers’ descriptions of how they use the consultation as an opportunity to gain confirmation or validation of their suffering is a motive also put forward in a study of repeated medical visits among American back patients (McPhillips-Tangum, Cherkin, Rhodes, & Markham, 1998). In Reid, Ewan and Lowy’s (1991) study of repetitive strain injury patients, they points out that; ‘‘Many doctors seemed not to realise that the women were searching not so much for a diagnosis, but for caring and credibility.’’ An illustration of how health care can represent more than the hope of physical improvement is also seen in Kleinman’s description of Howie, an American back pain sufferer who has undergone three unsuccessful operations but who still views them as important: ‘‘The surgeries have had one clearly positive effect, in Howie’s view. They have created icons of his travail, scars that he can show people, that he can touch himself to assure himself that there is something ‘‘physically wrong’’ with his back. After each of his surgeries, he felt that his family, fellow police officers, and doctors become more sympathetic. As he contemplates yet another major surgical procedure, this latent social function of surgery is a large part of the decision making, since his overall judgement about the surgeries is that they have made things worse.’’ (Kleinman, 1988). In Howie’s case, the treatment also provided him with physical scars. The social advantages of having visible ‘‘proof’’ of suffering is a theme that has been referred to both here and in several other studies (Walker et al., 1999; Rhodes et al., 1999; Joachim & Acorn, 2000). Psychological diagnoses—avoided rather than challenged The frustration among those back pain sufferers who receive psychological or psychosocial diagnoses is also seen in other studies of back pain sufferers (Borkan et al., 1995; Rhodes et al., 1999; Walker et al., 1999). While several of the back pain sufferers in this study see their mental health problems as a side effect of long-term pain, they do not challenge what they assume to be their doctor’s view of the connection between mental health and back pain. Instead, they choose to hide these problems, fearing that openness will lead to a delegitimation of their experience of physical pain. Do doctors delegitimise? Is this delegitimation from doctors real or imagined? Some studies suggest that the acute model is still the dominant model of sickness among today’s medical profession and in medical education (Davis et al., 2001; Geyman & Bliss, 2001). Where medical evidence is
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missing health professionals also appear to give less weight to patients’ self-reported level of pain (Turk, 1996; Tait & Chibnall, 1997; Chibnall, Tait, & Ross, 1997). Other studies have suggested that back pain sufferers in particular are not a popular patient group because of the difficulties involved in diagnosing and treating these patients (Cherkin, Deyo, Berg, Bergman, & Lishner, 1991; Walker et al., 1999; Seers, 1996). A reported unwillingness among doctors to reveal their uncertainty or limitations (Skelton, 1998) may increase this unpopularity. While these factors make co-operation with health professionals difficult, non-compliance may be seen as ‘‘deviance’’ and ‘‘sneakiness’’ by the patient (Kotarba & Seidel, 1984) and failure to improve despite professional treatment and advice can also be interpreted as a result of non-compliance (Skelton, 1998).
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 back pain sufferer must strive to live up to the doctor’s expectations. Possibly, challenges to the medical profession’s definition of back pain sufferers’ status, as has been seen in certain other groups, for instance in the deaf movement, is first possible once a clear medical definition has been achieved and once these benefits are no longer under threat. Aspects of chronic illness such as empowerment and coping are also relevant to the experiences of chronic back pain sufferers. In fact, the discussion list is one such illustration of how individuals with chronic illnesses turn to their peers in order to share knowledge and support. But the chronic back pain sufferer’s continued dependence upon the medical profession to ensure access to necessary social benefits cannot be overlooked. Frankenberg points out that; ‘‘Chronic disease (y) leads clearly to a different and perhaps more complicated way of being sick. It requires a different, longer lasting and more demanding cultural performance.’’ (Frankenberg, 1986). Different concepts are necessary to capture the complexity of chronic back pain as well as other chronic illnesses. And despite the limitations of the sick role concept in describing the realities of chronic back pain, it still appears to describe the expectations of doctors, families, colleagues, and the back pain sufferer himself.
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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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