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Werner et al. / WOMEN WITH CHRONIC PAIN. Encountering the Continuing Challenges for Women With Chronic Pain: Recovery Through Recognition.
QUALITATIVE Werner et al. / WOMEN HEALTHWITH RESEARCH CHRONIC / April PAIN 2003

10.1177/1049732302250755 ARTICLE

Encountering the Continuing Challenges for Women With Chronic Pain: Recovery Through Recognition Anne Werner Sissel Steihaug Kirsti Malterud

This work is based on experiences from a group treatment for women with chronic musculoskeletal pain. The authors explored the nature and consequences of the reported benefits from being met with recognition in the groups, focusing the potential usefulness in everyday life. In-depth interviews of six participants of various age and backgrounds were conducted. The women’s answers reflected how recognition had enhanced strength, confidence, and awareness expressed as increased bodily, emotional, and social competence. This competence provided tools to handle their pain and illness. Achieving the sense of a better life with chronic pain represents an important recovery process. Because of the normative and gendered way the term “coping(ability)” has been used, the authors introduce recovery competence as a more fruitful concept. Keywords: rehabilitation; women patients; gender; recovery competence

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uring the last few decades, several group-based treatment programs have been developed for patients with musculoskeletal pain. Exercise, relaxation therapy, and different forms of psychological and educational programs are common (Bennett et al., 1994; Haugli, Steen, Sandvik, & Lærum, 1997; Johansson, Dahl, Jannert, Melin, & Andersson, 1998; McCain, Bell, Mai, & Halliday, 1988; Mengshoel, Forseth, Haugen, Walle-Hansen, & Førre, 1995; Nicassio et al., 1997; Wigers, Stiles, & Vogel, 1996). Physical training, psychological/educational methods, and combinations of these have all proved useful. The evaluations are outcome rather than process oriented. Researchers use standardized questionnaires to compare scores before and after treatment, but outcome measures alone provide a limited understanding of improvement (Steihaug, Ahlsen, & Malterud, 2001). Consequently, there is limited knowledge of what type of help is beneficial, why, and for whom. Moreover, we do not know much about the relevance for participants with various

AUTHORS’ NOTE: This study is based on a project where a group-based treatment program was developed and evaluated (Steihaug, Ahlsen, & Malterud, 2001). It has been supported by grants from the University of Oslo and the Norwegian Research Council. We would like to acknowledge the assistance of Lise Widding Isaksen, Ph.D., a sociologist who gave valuable advice and comments, and Merete Undeland, M.D., who provided helpful suggestions later in the writing process. QUALITATIVE HEALTH RESEARCH, Vol. 13 No. 4, April 2003 491-509 DOI: 10.1177/1049732302250755 © 2003 Sage Publications

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kinds of chronic musculoskeletal pain outside the group context. The gender dimension is often neglected in descriptions of musculoskeletal pain and its treatment. However, musculoskeletal symptoms are more common among women than men (Natvig, Nessiøy, Bruusgaard, & Rutle, 1995), and women’s pain is classified as medically unexplained disorders more often than men’s (Gijsbers van Wijk, Kolk, Van den Bosch, & Van den Hoogen, 1992; Sharpe et al., 1994; Speckens, Van Hemeert, Bolk, Rooijmans, & Hengeveld, 1996; Verbrugge, 1980). One medical assumption is that, unlike those of men, women’s symptoms are emotional rather than psychological in origin (Armitage, Schneiderman, & Bass, 1979; Colameco, Becker, & Simpson, 1983; Reid, Whooley, Crayford, & Hotopf, 2001), even when the patients do not regard themselves as mentally ill (Jackson, 1992). This study is drawn from experiences of a group-based treatment program for women with chronic musculoskeletal pain in primary health care in Stovner/Oslo, Norway. The groups, led by a general practitioner (the second author) and a physiotherapist, met for 2 hours weekly for one year in 1996/97. The treatment program included a combination of movement training and discussion groups. The latter was based on lessons in physiology and psychology of pain, and also included a social aspect consisting of a mutual exchange of everyday life experiences. The treatment program has been evaluated and found beneficial (Steihaug, Ahlsen, & Rutle, 1994). The combination of movement training and discussion groups was essential. The participating women emphasized a training program based on mobility rather than physical fitness, strength, and stamina, and discussion groups characterized by acceptance, a sense of belonging, and cooperation. According to the women, experiences of being met with a recognizing attitude by the leaders and the participants were of utmost importance. Steihaug, Ahlsen, and Malterud (in press) have examined the phenomenon of recognizing interaction in more detail by studying the types of action and interaction that the women considered to have crucial effects. The women described recognition as forms of awareness expressing an attitude, among both the group leaders and the participants, characterized by listening, understanding, confirmation, and acceptance and tolerance. This approach seemed to contribute to an increased ability to understand and handle various aspects of their lives (Steihaug et al., 2001, in press). The initial goal for the program was to reduce pain and increase physical fitness and muscle strength (Steihaug et al., 2001). However, experiences along the way helped us to adjust the objectives of the program. The symptoms were recognized as a chronic state of pain. Steihaug et al. (2001) described and discussed in more detail experiences elaborating on the treatment program; their report was based on a systematization of data obtained from women and health personnel who participated in eight treatment groups carried out between 1992 and 1996. The revised aim for the treatment program was to help the women develop tools and strategies to handle pain and strengthen their resources by providing new modes of individual understanding. The health care service had apparently succeeded in approaching the participants in a way they appreciated. However, could the crucial effects of the treatment, which were related to being recognized in the groups, be useful in everyday life, or did they merely pass for cozy chat and pleasant treatment? Did the acquired tools and strategies help beyond the groups, and which factors might enhance or obstruct the application of these beneficial effects? We therefore undertook a qualitative interview study to explore the nature and applicability of the competence related to challenges met in their everyday life after the end of the treatment program. A

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broader purpose has been to develop knowledge about what is good (health) care for women with chronic musculoskeletal pain, and why, to be able to offer this patient group the best possible treatment in the future.

THEORETICAL PERSPECTIVES Knowledge About (Women’s) Embodied and Gendered Everyday Life Our study is based on feminist theory represented by Smith’s (1990) sociology and Code’s (1991, 1995) philosophy. We present these perspectives briefly below and, later in the article, perform a theoretical analysis of the empirical material. The epistemological projects by Smith (1990) and Code (1991) have several points of resemblance. Both authors aim to explore how knowledge has traditionally been constructed and produced within sociological and philosophical contexts, respectively, arguing that knowledge is situated or located with gender as a core category. From different scientific perspectives, they both criticize mainstream theories, claiming they are, in fact, malestream perspectives. Therefore, they suggest an alternative epistemology using a feminist frame of reference. Smith and Code both have argued that, starting from the position or perspective of the woman in everyday life as the one who knows and has (objective) knowledge of external reality, it is possible to grasp (women’s) experiences, which have been subordinated and suppressed in the classical work on sociology and philosophy. The feminist standpoint theory developed by Smith (1990) as a radical criticism of sociology was based on her experiences of the gap between (women’s) life and scholarly theory. She argued that sociology has traditionally failed to account for the way in which people experience the world and is characterized by the ruling-class (men’s) external perspective. According to Smith, sociological methods, conceptual schemes, and theories have been based on and built up within men’s social universe, even when women have participated in the process. On the whole, it is the labor of men that has been viewed as work in classical sociological texts. The world of household, children, and neighborhood, which have traditionally been the main responsibility of women, have been viewed neither as work nor as real activities, but rather as natural, instinctual, or emotional labors of love (Borchgrevink & Holter, 1995; Harding, 1986; Smith, 1990). Consequently, women have been forced to think of their own world with male concepts and terms. Hence, the established social forms of consciousness have alienated women from their own experiences (Smith, 1990). Smith’s point is not to make statements on how women really “are” but rather to demonstrate the hierarchical structure of work, experience, and knowledge women and men still carry. Smith has argued male authority over the traditionally regarded female world. Like Smith (1990), Code (1991) approaches the knowledge produced in classical philosophical works as social, situated, and hierarchical (male) constructions of dichotomies, arguing that the knower is not a value-free and ideologically neutral abstraction. She is especially concerned with what counts as knowledge: whose knowledge we are talking about, who can be a knower, and when and how we construct and exchange knowledge. Code (1995) has examined the epistemological

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status of women’s experiences and elaborates an epistemology of everyday life. Looking away from sciences to places where people claim and need other kinds of knowledge, or where they have to understand the position science claims to occupy in their lives, she explores rhetorical spaces, where recognizing and understanding is, respectively, achieved or thwarted. Code (1995) has spoken about rhetorical spaces as locations where the cultural and contextual rules of the game influence the structure and limit the kinds of utterances that can be voiced within them with a reasonable expectation of being heard, understood, and taken seriously. This implies that it is doctors and health care providers who decide adequate pain treatment and measures physical fitness, strength, stamina, and pain reduction. Such “ruling relations” (Smith, 1990) structure and limit aim and outcome, why and for whom.

Seeing Things Differently From the (Women) Patients’ Internal Perspective Smith’s (1990) and Code’s (1991, 1995) perspectives enable us to explore the nature of competence gained from the treatment program and their position in everyday life outside the group context rather than through standardized questionnaires developed from the (top-down) researchers’ (external) point of view. The concepts of ruling relations (Smith, 1990) and rhetorical spaces (Code, 1995) can provide access to an understanding of the structure and function of society at large, making the women’s experiences of factors that enhance or obstruct their competence comprehensible—not merely in terms of individual behavior but as social relations and structural forces of power as well (Harding, 1986). Furthermore, Smith’s (1990) feminist standpoint theory also makes it possible to render individual strengths and resources visible or expressible. Finally, Code’s (1991) everyday life epistemology can elucidate how the recognizing attitude met within the groups might have enabled the women’s everyday life experiences of a body in pain to become a valid basis of knowledge.

METHOD Participants The empirical data consists of six in-depth interviews with women with chronic musculoskeletal pain. Informants were recruited among participants from two treatment programs. The selection of informants was mainly done by the second author, who developed, led, and evaluated the group-based treatment program for women with chronic musculoskeletal pain in Stovner/Oslo, Norway. We applied a purposeful sampling strategy covering women aged 31 to 53 years, two from each decade of age, from two different treatment groups, representing different backgrounds regarding illness experiences, assumed treatment benefit, marital status, and labor market connections. The women had been referred to the treatment program through local primary care providers. Two of the women were living in marital relationship. Three had children—two had adult children, and one had children still at home. Four of the women were employed, and the remaining two had social

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benefits, such as rehabilitation support and disability pension. Symptom duration in each individual ranged from 1 to 16 years.

Data Collection Data were obtained from semistructured, audiotaped in-depth interviews based on Kvale’s (1996) principles. The interviews (average duration 2 hours) were carried out between 3 and 4 months after the groups had terminated. Our attention was directed toward the currently experienced interactional challenges rather than long-term treatment effects. We wanted to explore the nature of the reported beneficial effects more closely in the context of the participants’ everyday life. We approached this competence gained by the women from participating in the movement training, the discussion groups, and having been met with a recognizing attitude, and examined its applicability beyond the context of the groups. The study was introduced to the informants as a follow-up study, aiming to find out more about what had been perceived as good or bad treatment experiences, to offer women patients with chronic musculoskeletal pain the best possible health help in the future. The interviewer (the first author), a sociologist, emphasized that the study was clearly independent from the general practitioner and physiotherapist who had led the groups. She informed the women that it was voluntary and that they could refuse to participate without any reason to fear negative consequences. The informants were asked for permission to audiotape the conversation. It was emphasized that the interviewer was the only person with access to the records and that the information would be respectfully taken care of. We followed the principles of the Helsinki Declaration for medical research (World Medical Association, 1964/ 2002), receiving an informed and written consent from the participants. Before the collection of data, the project was approved by the regional committee for medical research ethics. The interview included questions about how the program elements had been used within the context of the groups, how the experiences of recognition had been transferred to competence, the nature of the competence gained, and the relationship between the recently gained competence and the challenges of everyday life. We interviewed until we obtained saturation in the material, sampling step-bystep a broad range of dimensions of illness experiences, assumed treatment benefits, marital status, labor market connection, competence descriptions, and factors that obstructed the application of the benefit in the context of the women’s everyday life.

Data Analysis The interviewer transcribed the conversations. We performed the analysis according to the principles of Giorgi’s (1985) phenomenological analysis through the following four stages: (a) reading all the material to obtain an overall impression and bracketing previous preconceptions; (b) identifying units of meaning, representing different aspects of the women’s experiences and coding for these; (c) condensing and abstracting the meaning within each of the coded groups; and (d) summarizing the contents of each code group to generalize descriptions and concepts reflecting

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the most important experiences from the voices of the women (Giorgi, 1985; Malterud, 1993). During analysis, we focused on the nature and applicability of the competence outside the treatment groups, searching particularly for negative cases, which might contradict the preconceptions of the interviewer—preconceptions that were demonstrated by the fact that during the first two interviews, she had been more preoccupied with factors that enhanced than with those that obstructed application of the competence. We interpreted the material within a feminist frame of reference (Code, 1991, 1995; Smith, 1990), emphasizing the relationship between gender and power in the context of everyday knowledge.

FINDINGS The women’s answers reflected how being met with a recognizing attitude in the treatment groups had enhanced various aspects of strength, confidence, and awareness, which appeared as an increased bodily, emotional, and social competence. The knowledge was perceived as applicable to everyday life in several ways, representing different tools for dealing with a painful life and various aspects of the subsequent sick role. The most important aspects varied from woman to woman. However, most of the informants also experienced difficulties in using this competence, although the negative situations appeared less threatening. The material demonstrates a broad diversity of experiences. We elaborate on the women’s descriptions of the competence gained from participating in the groups. Aletter marks the quotations, and all names used here are pseudonyms.

What Did the Women Acquire in the Groups—For Better or Worse? The women confirmed and specified the importance of feeling respected and appreciated within the groups, the resulting personal and mutual confidence, and the various aspects of strength, confidence, and awareness gained from this. Their statements illustrated that being met with recognition regarding their personal qualities and attempts at restitution had strengthened their belief in themselves and also decreased their feeling of guilt for not becoming healthy. Three women said that their self-esteem had been strengthened by responses from the group. A 40year-old woman said she felt supported and confident in her personality: The group has given me strength and told me that I’m all right as a person . . . Now I have more faith in who I am and how much strength I have inside me. I’ve got messages from the group that I’m actually a considerate person, that they can trust me, and that I can be funny. (B)

An informant in her 30s expressed the significance of support from group leaders and participants with everyday life experiences similar to hers: I know I’m doing as well as I can. I know I’ve been tough and I can trust this feeling since the group agrees to that . . . Now, I don’t believe that it’s me it is something wrong with, because I’ve had it confirmed several times that I’m not crazy. In fact it’s quite normal to be tired when you’ve pain over a long period of time. (E)

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Another important aspect mentioned was the acquisition of enhanced awareness of personal needs and desires, allocating capacity, and limitations. A woman in her 50s said, “I’ve become more aware of the pain and what I can or cannot stand” (A). Two of the women pointed out that the increased bodily, emotional, and social competence gained from the treatment program was very much about permitting oneself to be aware of internal signals. I’ve learned to go into myself and feel whether I’m in a state of stress. I didn’t allow myself to understand why I was so tense earlier. Consequently it took longer to recover. (D)

Furthermore, being outspoken about personal needs and desires was said to be a constantly ongoing internal and external process of work. Despite the positive dimensions of competence achieved, the answers also reflected some negative effects due to the increased level of awareness. Even though the women were doing better both physically and emotionally, the pain was still there. One of the younger informants said that the pain had even spread to other muscle groups. She described an increased feeling of despair caused by having to realize that she might never be restored to her former healthy state. She emphasized the difficulties in accepting and adjusting to bodily limitations, the sorrow and bitterness of having to revise the picture of herself: It’s difficult to accept that I can’t use my body the way I want—having to accept that it restricts me, and I’m in my 30s; I’m not 70! I can’t go to the cinema or a concert. I hoped to get an education, but sitting and reading hurts my neck. I can’t stand, I can’t carry anything, and when I’m dancing I can’t bend my head backwards because that’ll give me a headache the following day. And having to be careful all the time is hard too, and if I don’t move, I will get stiff too. (E)

Some of the women mentioned another negative aspect related to enhanced feelings of loneliness. After the treatment program, the participants lost the weekly moments of recognition and the sense of belonging and cooperation. One woman compared the atmosphere of the groups to the realities of everyday life in this way: To belong in a group is of great importance to me. Therefore, it really scares me being thrown out into the blue when the group ceased. You find a place where you feel you’re taken into the warmth, and then you are pushed out to the desolate cold again. This can be pretty tough. (E)

Applying the Competence in the Context of Everyday Life The participants described the strength, confidence, and awareness gained from the treatment program as being useful bodily and emotionally, and gave social competence outside the group context. Their answers differed, reflecting various ways of becoming more explicit toward others concerning personal needs and desires, allocation of capacity and limitations. Different women described how a more confident and strengthened selfesteem helped them to encounter and endure disagreements from other people. They felt less sensitive to other people’s thoughts and reactions to chronic musculoskeletal pain, and also less preoccupied with trying to obtain

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understanding from the outside world. One of the participants reflected on internal emotional changes: Sometimes you meet people who don’t know so much about muscle pain—people who tell you that you look great—that kind of comment used to make me feel very irritated, sad, and frustrated. But after the treatment group I can handle, or even overlook the comments—and I don’t mind so much either. I know myself how I’m doing and have taught myself not to be sensitive to people who don’t really understand what it’s like to live with pain and discomfort. (D)

Three informants experienced less frustration, resignation, and depression and, rather, felt a surplus of energy and pleasure. One woman said she experienced pain differently since she had managed to alter her focus, concentrating on her resources: The pain is never the first thing I think about any longer, and if I’ve got pain one day, my focus is different. I know it’ll improve if I only get out of bed and start moving. It isn’t the end of the world. I really think that I experience the pain differently. It is not as disabling as it used to be. (B)

The women described various forms of becoming adjusted and reconciled to chronic pain, focusing on capacity and limitations related to needs and desires. Some women talked about taking their personal desires into account, which they said was something that they “didn’t have time to do” or “didn’t get any pleasure from doing” earlier. Expressions like “thinking about oneself once in a while” and “having a good time,” for example a relaxing holiday, gardening, being with friends, or buying oneself something new were mentioned by two of the participants. The most frequently mentioned result by all the women was an increased ability to permit themselves to adjust to bodily needs in practical work, allocating individual capacity and limitations. A woman in her 50s said that her increased awareness of bodily function and habits had led to changes in her daily routines: I’ve become more aware of how I breathe, especially at work and when I’m in a state of stress. I use my body in a different way when I’m sitting, and I’ve been more aware that I should stand more correctly—relaxing on both feet. (A)

All the participants spoke of various activities in their everyday life such as moving, walking, bicycling, and using the stairs rather than the elevator as various forms of movement training. Mobility and relaxation were mentioned as tools for reducing or preventing pain. The significance of knowing the capacity and limitations of the body was expressed in this way: I’m not afraid of the pain any longer. It could frighten me quite a lot earlier. But I know my body now, I know my back is really too bad, but I can do exercises for maintenance. (D)

Finally, they all mentioned various methods to make their surroundings aware of their capacity and limitations with respect to practical work. One woman said, “I’m trying to explain to my family that I don’t have as much energy and power as I seemed to have before” (B).

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The participants varied regarding to whom and how they expressed this message, and what kind of work-related limitations were involved. The examples mentioned included relationships with husbands and family, work colleagues, or friends and neighbors. The limitations included reducing the amount of working overtime and housework; taking the responsibility for all the tidying, cleaning, washing, shopping, or childcare; stopping feeling obliged to provide service or preparing for “everything” or “everyone,” and giving a message to whom it might concern by saying “no.” One woman in her 50s told about answering her husband’s nagging, “Is there any food to be served? Aren’t we going to have anything to eat this weekend?” with Oh yes, we shall certainly have something to eat. Perhaps you might come up with something? And when he comes telling me there’s no toilet paper left, I tell him, No,—too bad you didn’t buy some more yesterday if you recognized by then there was no toilet paper left. (C)

Why Can’t She Just Do It? In spite of all the positive aspects mentioned as useful in the everyday life of women with chronic musculoskeletal pain, all the participants spoke of negative situations and obstructions when trying to apply the treatment experiences to situations outside the group context. Various matters were mentioned as being problematic for different women in varying degrees. Our material illustrates that knowledge is not necessarily sufficient to apply the competence acquired in the everyday life of women with chronic musculoskeletal pain. The problem of enacting what they had learned about themselves during treatment was also related to external obstructions. Negative reactions and lack of comprehension, especially from husbands, friends, or health care providers, are important challenges. A woman in her 40s told how difficult it could be for others to recognize her bodily limitations because the pain was invisible; nor did her husband recognize it as a good exemption from domestic work: Last weekend, Frederick asked me “Can you do the shopping?” But on Friday I had pain all over my body, so I said, “Can’t you do it? My body is hurting everywhere.” “I’m sure you can manage it,” he answered. “Why can’t you take the wheeled shopping bag and go?” He was planning to cook something special and had written the list for me. But I said: “No, I’m not going shopping!” And he answered: “Then I’m not making any dinner!” I got so annoyed that I took the wheeled shopping bag myself and went out to shop. He doesn’t quite understand. He just can’t accept it. (F)

However, even when the husbands or partners seemed to understand how pain limits their ability, the women themselves were still in charge of housework. One expressed her disappointment in this way: We shared the workload differently while I attended the treatment program, but now I feel it’s all back where we started. I’m disappointed because the responsibility once again is left to me; I’m the one who plans who’s going to take Beatrice to day care and pick her up afterwards. I’m the one who packs her rucksack, checks that she’s got clean clothes, rubber-boots, and rainwear in her rucksack, and I’m the one who prepares her lunchbox, and puts it into her rucksack. (B)

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Negative reactions from husbands or other people, who moaned and groaned, or even became annoyed or angry, when asked, expected, or demanded to help, made it more difficult for the participants to make use of the competence acquired from the treatment program. Well-intended advice from friends, even from those who tried to be helpful and caring, was also considered by the informants to make it more difficult to apply the treatment benefit. The women often felt they were given advice as an accusation for not having been clever enough or working sufficiently hard to become healthy. One of the informants said that superficial solutions from close friends might even result in a conflicting or collapsed relationship: Poor people who’re trying to give me advice! It’ll make a large gap between us. First you’re to blame because you have pain, and second you’re to blame because you have chosen not to get well. (E)

Finally, health care providers were mentioned as a third cause of obstruction. One of the young women gave examples from medical encounters, when the general practitioner had not shared her opinion of what should be considered suitable treatment and what the outcome measure for this should be. Her doctor was willing neither to give her sick leave nor to refer her to one more physiotherapeutic treatment program because she had already had two without improvement. Two women mentioned similar experiences of not being referred to a specialist. Encounters with the desolate cold of everyday life situations outside the groups sometimes challenged the women’s ability to benefit from the competence obtained in the treatment program. Subjected to repeated experiences of not being heard, understood, or taken seriously regarding their invisible but long-lasting pain, the women could still experience doubt about themselves or feel that they were to blame.

DISCUSSION Restitution Stories: The Impact of Preconception in the Production of Knowledge Our objective in this study was neither to judge the treatment nor to find out whether the participants were healthier after attending the groups. The point of departure is the positive treatment experiences related to being met with a recognizing attitude. Still, it is not the recognizing interaction as described and discussed by Steihaug et al. (in press) that we have studied. Here, we aimed at taking a closer look at the nature and consequences of the competence gained from being met with a recognizing attitude in the groups, drawing special attention to factors enhancing or obstructing the treatment benefit in everyday life. In advance, we held the preconception that experiences from participants would make valuable contributions to the future shaping of similar treatment programs. These ideas were confirmed during data collection and analysis, demonstrating that our material drawn from six informants provided a diverse range of information that can be of relevance for other women patients in similar situations.

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The relationship between researcher and informants, the questions that are asked or omitted, and the answers given by the informants or expected by the interviewer are important elements in the construction of knowledge. The researcher is expected to clarify not only her theoretical frame of reference but also her perspectives and preconceptions, elucidating an awareness of the researcher’s role as a coauthor of the text being produced (Malterud, 2001; Widerberg, 1999). During fieldwork, the interviewer (the first author) became painfully aware of how the conversation reflected her preconception and how she positioned herself within the field. In the first two interviews, she found that she had been more preoccupied with factors that enhanced than with those that obstructed application of the competence. Had she expected, or even preferred, the participants to tell her about positive situations, when they had actually managed to apply the treatment benefit outside the group context? Could she thereby have helped to create stories that reflected the better aspects of everyday life of women with chronic musculoskeletal pain? However, our employment of a qualitative design enabled us to be flexible during the data collection. We made use of the knowledge derived from the preconceptions of improvement stories and became especially aware of asking for factors obstructing the application of the women’s competence both in the subsequent interviews and while analyzing the data material. Unexpectedly, we found that even though the interviewer’s perspective led to a limitation in the first interviews, the women had still mentioned various challenges arising when they tried to apply the competence in their daily lives. We do not question the truth of the stories being told. Neither have we tried to find out how things “really” are. Therefore, we do not present these stories as evidence of facts indicating a successful treatment program or coping behavior. However, we want to draw attention to the fact that memories from the past are memories of how we imagine, reinterpret, and construct facts rather than memories of absolute truths (Widerberg, 1999). What we remember is dependent on language, culture, class, and gender. There is also a difference between lived experiences and the verbal rendering of these. In the process of translating, language and gender can function as obstructions to remembering and wording (Widerberg, 1996). Exploring interactional aspects of storytelling, looking for preconceptions of interviewer or interviewees, can make us see and learn new things about ourselves, our society, and our culture (Widerberg, 1999). Referring to sexual storytelling, Plummer (1995) asserted that the telling of stories is to be seen as a social action embedded in a social world as a symbolic interaction and political process that fulfills some roles in our social life. He argued that stories are generated by social and political conditions, and this enables certain stories to be told and heard. The sociologist Frank (1995), who has written about his own illness, claimed that restitution stories are what we all want to hear, whether we are patients, health care personnel, or just members of the society. He argued that restitution stories reflect how we have learned to talk about illness from institutional stories, which provide a model of how sickness should be described in our culture. In various empirical studies, illness has been shown to be experienced as a moral event, concerning shame, blame, and responsibility (Eccleston, Williams, & Rogers, 1997; Jackson, 1992; Kugelmann, 1999). The researchers have not discussed the impact of gender and power. Although several studies have shown that gender operates on different levels in medical interaction (Armitage et al., 1979; Bertakis, Helms, Callahan, Azari, & Robbins, 1995; Colameco et al., 1983; Hall, Irish, Roter, Ehrlich, & Miller, 1994; Roter, Lipkin, & Korsgaard, 1991; Safran, Rogers, Tarlov,

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McHorney, & Ware, Jr., 1997) and the potential meaning of this in medical encounters (Malterud, 2000), most of the basis of medical knowledge does not consider that gender might contribute to the understanding of disease and treatment (Lupton, 1994). This is also the case in several of the evaluations of treatment programs for patients with fibromyalgia—a frequently occurring labeling of women’s “unexplained” pain (Malterud, 2000). The sociologist Haug (1992) has shown it is hardly possible to refer to the human body without also referring to gender. In her study of morality, she argued that morals also have two genders: In men, the central element is property; in women, it is her relation to her body and sexuality. Her point is that for men and women to be considered moral beings, different behavior is required of them. Moreover, the same behavior by women and men is interpreted differently depending on the gender of the acting person. Women with medically unexplained disorders report several negative experiences in their encounters with health care personnel when telling their story and describing their symptoms (Eccleston et al., 1997; Garro, 1992; Jackson, 1992; Johansson, Hamberg, Lindgren, & Westman, 1996; Östlund, Cedersund, Alexanderson, & Hensing, 2001; Söderberg, Lundman, & Norberg, 1999). Empirical studies describe how women with pain have to exert themselves when seeking help to be taken seriously and not considered as whining and complaining (Garro, 1992; Johansson, Hamberg, et al., 1996). Fibromyalgia is a condition found to have low prestige in the cultural medical hierarchy of diseases (Album, 1991). According to Haug’s (1992) theory, we might assume that the act of “saying” pain in the genre of complaints (Kugelmann, 1999) would be interpreted differently, depending on gender and disease. Women who talked (too much) about negative situations might be in danger of having their complaints interpreted as groundless suffering from unreal pain caused by their inappropriate or maladaptive way of relating to their bodies and health disorders. Telling stories about improvement might then be a way of living pain in an acceptable and, therefore, (gendered) moral manner.

Can Suffering and Shame Be Replaced by Strength, Confidence, and Awareness? To sum up the findings, the women participants reported their pain experiences as markedly changed due to alteration of focus from pain and disablement to resources and enhancement. They pointed out their ability to listen to their own feelings related to needs and desires. On the other hand, the participants had also acquired an ability to keep their emotions at bay by becoming less affected by lack of recognition from important contacts. However, they also mentioned frustration for having their plans and future distorted, as well as difficulties with the application of their enhanced bodily, emotional, and social competence outside the treatment program. A common interpretation of changes in mental, emotional, and behavioral reactions in patients with chronic musculoskeletal pain after participating in treatment programs has been to conclude they have learned to solve problems and have developed the ability to cope with pain and activities, as well as stress and discomfort, in their everyday life (Bennett et al., 1996; Burckhardt, Mannerkorpi, Hedenberg, & Bjelle, 1994; Haugli et al., 1997; Mengshoel et al., 1995; Nicassio et al., 1997; Wigers et al., 1996). Improvements are measured, conceptualized, and comprehended, but the question is how.

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In some of the evaluations, the improvements are labeled as reduction in “helplessness,” “passive coping,” and “catastrophizing” (Burckhardt et al., 1994; Johansson, Dahl, et al., 1998; Nicassio et al., 1997). Frequently mentioned indexes of improvements include decreased pain intensity and pain behavior, reduced depression and length of sick leave, mood improvements, and increased work capacity (Bennett et al., 1996; Burckhardt et al., 1994; Haugli et al., 1997; Johansson, Dahl, et al., 1998; McCain et al., 1988; Mengshoel et al., 1995; Nicassio et al., 1997; Wigers et al., 1996). Although Johansson, Dahl, et al. questioned the commonly used indexes of rehabilitative success, and Burckhardt et al. (p. 719) asked if the weather might have played a role in the lack of change, there still seems to be a trend toward explaining (lack of) treatment outcome using psychological and individual terms of (deficient) coping or (lack of) motivation for better symptom management. Hence, contextual and structural aspects of the rehabilitation process and individual relevance seem to be neglected in the interpretation. For instance, Burckhardt et al. stated, There is some evidence that the immigrant subjects were more depressed as a group and benefited less from the program. They may have had problems understanding the content of the course and the method of making contracts for behavior change. (p. 718)

Viewing improvement as due to motivation has far-reaching implications for one’s original model of one’s pain problem as “real,” Jackson (1992) argues. One of the main problems with the use of the term coping is said to be its normative character with its associations of “successful” or “unsuccessful” responses to chronic illness and disability (Bury, 1997). “Can women cope?” Banyard and GrahamBermann (1993) asked, maintaining that we learn from psychological theories that women do not cope as well as men, regardless of the fact that there is little conclusive evidence to show this is the case. Coping itself is too often attributed to individual personality characteristics and individual lacking rather than being seen as the product of access to resources and power, they argued. The concept of gender is too oversimplified and seen as a unitary biological trait rather than as a process that changes in interaction with its environment. Consequently, the gender dichotomy of coping hinders a discussion of the structural forces of obstructions and of women’s strengths as well (Banyard & Graham-Bermann, 1993; Malterud, 2000; Malterud & Hollnagel, 1999). Strategies from the perspective of the ruling-class (men) experts (Smith, 1990), which appear as “passive” or even “maladaptive,” might, from the standpoint of the (woman) patient, be highly beneficial and motivated by a need to survive or to save energy for dealing with other problems (Banyard & Graham-Bermann, 1993). According to Smith (1990), both experiences and gender should be understood as relational, determined by social relations of domination rather than by nature (Harding, 1986). An assumption in feminist standpoint theory has been that the position of oppression is a universal womanly phenomenon, which gives favorable conditions for the study of common experiences among women. Harding argued that there are no universal (i.e., essential) womanly experiences. However, she also pointed out that oppression exists as a starting point to experience and therefore constitutes a universal phenomenon. In the following, we will call attention to an issue raised by some of the informants when talking about obstructions for using the competence gained from the

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program. The women patients reported that being aware of and making adjustments to their own capacity and limitations in their daily life was very closely related to permitting or allowing oneself to adapt to one’s own needs and desires. Smith (1990) maintains that the (gender) relation is the key to understanding women’s experiences. Therefore, we will look at two relationships mentioned by the participants as being obstacles when they were trying to take their own limitations into account: the medical encounter or the doctor, and the marital relationship or the husband. The family physician functions as a gatekeeper to gain access to the benefits of the welfare state in Norway. When the (woman) patient with longlasting muscular pain needs physiotherapy, sick leave, or a specialist examination, she is dependent on the doctor’s agreement to make use of what she has learned in the treatment group and accept that her daily life must be modified because of her pain. Western scientific medicine has the cognitive and social authority to describe our bodies, and the power to confirm or deny the reality of everyone’s bodily experience (Wendell, 1996). This implies that—within the rhetorical space (Code, 1995) of medicine, where gender and power have been found to be practiced and to shape the medical encounter (Armitage et al., 1979; Bertakis et al., 1995; Colameco et al., 1983; Hall et al., 1994; Roter et al., 1991), and where the “unexplained” pain of women patients has been found at the bottom of the medical prestige hierarchy of diseases (Album, 1991)—it is the doctor who decides the rights and duties of the patient in the medical encounter. These can be called ruling relations (Smith, 1990), which structure and limit what counts as suitable medicine, aim, and outcome, as well as when and to whom. The professional authority to define the conclusions of the medical gaze is assigned to the doctor, regardless of gender. Making adjustments to bodily limitations implies that the female patients will have to leave some of the workload in family life to their men. This sometimes caused unpleasant reactions from their husbands, who had not necessarily understood or accepted their responsibility regarding family duties. The women often felt that they were wrong in thinking that they should be exempted from housework and child care, even when they had pain. The relationship with significant others, such as spouses, children, and friends, has been found to be crucial components in the rehabilitation process (Östlund et al., 2001). Hamberg, Johansson, Lindgren, and Westman (1997) have explored problems and conflicts in the rehabilitation of women patients with long-term musculoskeletal disorders that were related to the marriage contract concerning who does what in the marital relationship. The gendered power structure, assigned by demands and obligations within the marriage contract, was found to have implications for the restitution of the women patients. Hence, the rehabilitation program of women with chronic pain disagreed with the terms and patterns in the marriage contract because it did not take their marital responsibility into account. Hamberg et al. found that the main part of the domestic work and the parental duties was considered to be the women’s concern, and that their possibilities of negotiation for a changed division of work within family life were restricted. Within classic academic texts, the women’s responsibilities as regards household, children, and neighborhood have been viewed neither as work nor as real activities, but rather as a natural labor of love (Borchgrevink & Holter, 1995; Harding, 1986; Smith, 1990). Consequently, to be worthy of love within the rhetorical space (Code, 1995) of the marital relationship, the woman cannot demand too much from her man (Hamberg et al., 1997).

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Parsons (1951) claimed that if the patient seeks help and follows advice given, the sick role implies that the patient is not blamed for the sickness but, on the contrary, is granted exemption from everyday duties. Over the years, Parsons has been criticized by sociologists and feminists for his functionalist approach, whereby he defends the status quo concerning both the gender-based division of work in family life (Johnson, 1989) and the sick role (Gerhardt, 1989). However, Parsons’ evolutionary framework and his early analyses of the American family can be fruitful if his descriptions are read as descriptive rather than normative, Johnson has argued. According to the critical theories of Smith (1990) and Code (1990), these descriptions of the marital relationship and the sick role might, moreover, be said to be gendered descriptions, interpreted from the top-down position of (men’s) external (wage labor) perspective.

Recovery Competence: Retrieving a New Sense of a Better Life With Chronic Pain In spite of the structural forces restricting the women patients’ use of their competence outside the treatment program, we found that they had gained increased control and empowerment because of mobilization of individual resources. The women participants described a process of becoming experts in relation to themselves after participation in the groups. Hence, the bodily, emotional, and social competence descriptions might be said to challenge the rhetorical space (Code, 1995) of Western scientific medicine as an authority, which contributes to the undermining of the (woman) patient’s belief in herself as a knower (Wendell, 1996). The interpatient activities in general hospitals have been claimed to create an important informal help system (Album, 1989). The experience-near information exchanged among patients was found to be more concrete than the general advice offered by health care personnel. This can help them learn about sickness in another way as they try to understand existential questions connected to living with chronic illness in the past and in the future. The competence descriptions in our study of the women patients were not merely concrete and experience-near knowledge gained from the treatment program. The descriptions also exposed enhanced gendered competence of how to deal with pain and illness within a gendered sick role, restricted by rhetorical spaces (Code, 1995) of gendered power structures. They had acquired tools for demanding or just spending more time on their own needs and desires. Consequently, their reflections on the daily routines of work regarding what they did, to whom and why, might also be said to challenge the rhetorical space (Code, 1995) of the marriage contract because of the demands and obligations women have within the marital relationship (Hamberg et al., 1997). In the end, this is also concerned with a process of rehabilitation or recovery. Because of the normative and gendered way the term coping(ability) has frequently been used (Banyard & Graham-Bermann, 1993; Bury, 1997), we have found the concept of recovery competence to be more fruitful. In medicine, the concept of recovery has generally been applied to medical activities in the emergency room or to the process of waking up after surgical interventions (Malterud, in press). Here, we speak about an extended understanding of recovery, which was originally coined for patients with mental illness. However, our aim here is not to present the chronic

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musculoskeletal pain of women patients as originating from emotional problems. The interface between chronic musculoskeletal pain and mental illness is concerned with living a life with chronic disability rather than with a related etiology. Recovery does not mean being cured, that the suffering has disappeared, all symptoms removed, and/or the functioning completely restored (Anthony, 1993; Deegan, 1996). It is a way of living a satisfying, hopeful, and contributing life even with the limitations caused by illness (Malterud, in press). In our material, recovery competence was described by the women patients as a process of achieving a new sense of a better life with chronic pain.

IMPLICATIONS In conclusion, feeling recognized within the treatment groups was reported by the women participants as of vital importance for the extent of benefit (Steihaug et al., in press) and was, moreover, applicable in their everyday life as recovery competence. According to the descriptions of the women patients, the recovery competence was a contextual, relational, and gendered process of constantly ongoing work rather than an individualized outcome of successful coping in the sense of being cured. However, if recovery competence is a matter of gender—then what? The findings point to some potential for alterations. As illustrated here, being met with respect and acceptance within the treatment program can help the participants to recognize both their limitations and their capacity. However, it could indicate a potential for changes related to health care providers and the ideology or aim of treatment program offered to women patients with chronic musculoskeletal pain. The practice of empowering the woman patient (Malterud, 2000; Malterud & Hollnagel, 1999) by giving her the right to feel less obliged to, or to take less responsibility for, work might be a fruitful approach, giving her more strength, confidence, and awareness according to her own limitations and capacity. However, we should also be aware that teaching the woman patient to set limits by saying “no” might also be (perceived as) a way of merely putting the responsibility on the woman herself rather than demanding the other (man) in the relationship to be more sensitive to the (pain) experiences of the woman (patient). A considerable proportion of women experience abuse and violence throughout their lives (Schei & Bakketeig, 1989). To avoid reproducing patterns of gendered power structure, where women have little influence and talking space in medical encounters (Borges & Waitzkin, 1995; Waitzkin, 1979), treatment programs, and everyday life, we should be aware of gendered power structures of imbalance obstructing the woman patients’ ability to use the competence achieved or to achieve a better life with chronic pain. The medical encounter constitutes only a minor proportion of the life of the patient. However, the way the doctor perceives her pain and handles the illness may be of vital importance for the woman’s understanding of herself and her ability to come to terms with a painful life. Thus, the responsibility of health care providers is to recognize the suffering of the woman patient, her strength, and to prevent further disempowerment (Malterud, 2000). The woman patient with chronic musculoskeletal pain can then concentrate on dealing with a painful life and the subsequently (gendered) sick role instead of struggling to maintain her human dignity (Söderberg et al., 1999).

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Anne Werner is a sociologist and research fellow at the Centre for Women’s Studies and Gender Research, University of Oslo, Norway. Sissel Steihaug, M.D., Ph.D., is medical director at the Health Department, Urban District Stovner/ Oslo, and director of medicine at the National Insurance Administration, Norway. Kirsti Malterud, M.D., Ph.D., is a professor of general practice at the University of Bergen, Norway, and the University of Copenhagen, Denmark, combined with half-time clinical work as a practitioner.