Meanings of women's experiences of living with fibromyalgia

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DOCTORA L T H E S I S

Department of Health Science

Division of Nursing

Meanings of Women’s

Experiences of Living with

Fibromyalgia

Päivi Juuso

ISSN: 1402-1544

ISBN 978-91-7439-618-8 (tryckt) ISBN 978-91-7439-619-5 (pdf) Luleå University of Technology 2013

Päi vi J uuso Meanings of W omen’ s Exper iences of Li

ving with Fibr

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Meanings of women’s experiences of living with fibromyalgia

Päivi Juuso Division of Nursing Department of Health Science Luleå University of Technology

Sweden

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Printed by Universitetstryckeriet, Luleå 2013 ISSN: 1402-1544 ISBN 978-91-7439-618-8 (tryckt) ISBN 978-91-7439-619-5 (pdf) Luleå 2013 www.ltu.se

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CONTENTS ABSTRACT 1 ORIGINAL PAPERS 3 PREFACE 4 INTRODUCTION 5 THEORETICAL PERSPECTIVE 5 Pre-understanding 6 BACKGROUND 7

The chronic illness experience 7

The chronic pain experience 9

Fibromyalgia – a chronic pain syndrome 11

Women’s experiences of living with fibromyalgia 13

Patient associations 16

RATIONALE 18

AIM OF THE THESIS 18

METHODS 19

Setting 19

Participants and Procedure 19

Paper I 19 Paper II 20 Paper III 20 Paper IV 21 Data Collection 22 Narrative Interviews 23

Focus group discussion 24

Data Analysis 25

Phenomenological hermeneutical interpretation 25

Thematic content analysis 27

ETHICAL CONSIDERATIONS 28

FINDINGS 29

Paper I 31

Living with a double burden: Meanings of pain for women with fibromyalgia 31

Paper II 32

Meanings of being received and met by others as experienced by women with

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Meanings of feeling well for women with fibromyalgia 35

Paper IV 36

Women with fibromyalgia’s experiences of associations 36

DISCUSSION 38

Interpretation of the findings 38

METHODOLOGICAL CONSIDERATIONS 47

CONCLUDING REMARKS 51

SUMMARY IN SWEDISH – SVENSK SAMMANFATTNING 52

SUMMARY IN FINNISH – SUOMENKIELINEN YHTEENVETO 61

ACKNOWLEDGEMENTS 65

REFERENCES 68

PAPER I-IV

DISSERTATIONS FROM THE DEPARTMENT OF HEALTH SCIENCE, LULEÅ UNIVERSITY OF TECHNOLOGY, SWEDEN

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Meanings of women’s experiences of living with fibromyalgia

Päivi Juuso, Division of Nursing, Department of Health Science, Luleå University of Technology, Luleå, Sweden

ABSTRACT

The overall aim of this doctoral thesis was to describe meanings of women’s experiences of living with fibromyalgia (FM), a chronic pain syndrome that mainly affects women in middle age. From the overall aim, specific aims were formulated; meanings of pain for women with FM (I), meanings of being received and met by others as experienced by women with FM (II), meanings of feeling well for women with FM (III), and women with FM’s experiences of associations (IV). Data were based on narrative interviews (I, II, III) with 24 women and focus group discussions (IV) with 17 women. The interviews were analyzed through phenomenological hermeneutic interpretation (I, II, III) and thematic content analysis (IV).

Findings show that pain is an ever-present experience for women with FM. As it is invisible to others, the women are met with distrust, which implies that women with FM live with a double burden. Further, the findings show that women with FM are living with an aggressive, unpredictable pain (I) and being doubted by others because of the invisibility of the pain (I, II). Being doubted was related to the women’s efforts to be active and look fresh despite pain (I, II). In contrast, the abilities to do daily chores independently and help others were described as ways to find meaning; this gave the women strength to keep control and feel well (I, II, III). The women with FM described a need for togetherness, belonging, and being appreciated as they are (II, III, IV). This induced feelings of security (II) and feeling well (III). To be listened to and taken seriously gave feelings of gratitude, and to be understood was described as strengthening (II, IV). Support from family, friends, and others with similar experiences to theirs led to feelings of being worthy (I-IV).

The thesis suggests that meanings of women’s experiences of living with FM can be seen as striving for balance, because a split between their own needs and others’ expectations existed in all parts of their everyday lives. The painful body became a hinder in their relation to themselves and others. Being met with honesty, and interest, evolved feelings of confirmation and made the women feel well. At the association, the women could bring forward their own views without being disbelieved. In order to support women with FM’s quest for balance and to feel well, it is important to be aware of what facilitates and hinders their efforts.

Key words: fibromyalgia, women, lived experience, pain, being received and met, feeling well, associations, nursing, phenomenological hermeneutics, thematic content analysis

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ORIGINAL PAPERS

This doctoral thesis is based on the following papers, which will be referred to in the text by their Roman numerals:

Paper I Juuso, P., Skär, L., Olsson, M., & Söderberg, S. (2011). Living with a

double burden: Meanings of pain for women with fibromyalgia.

International Journal of Qualitative Studies on Health and Well-being, 6.

Doi: 10.3402/qhw.v6i3.7184

Paper II Juuso, P., Skär, L., Olsson, M., & Söderberg, S. Meanings of being

received and met by others as experienced by women with fibromyalgia. Manuscript submitted.

Paper III Juuso, P., Skär, L., Olsson, M., & Söderberg, S. (2013). Meanings of feeling well for women with fibromyalgia. Health Care for Women

International, 00, 1-13. Doi: 10.1080/07399332.2012.736573

Paper IV Juuso, P., Söderberg, S., Olsson, M., & Skär, L. Women with fibromyalgia’s experiences of associations. Manuscript submitted.

Papers I and III have been reprinted with the permission of the publisher concerned.

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PREFACE

The research presented in this thesis is part of a larger research project about living with illness. Söderberg (1999) has shown in a previous thesis that daily life is a struggle for women with fibromyalgia (FM); a struggle against the illness, against pain and fatigue, to find palliation, and for understanding and relief. She further concluded that support from healthcare personnel and others can help women with FM find the strength to manage daily life. Our interest was therefore on the women's experiences of daily life. With the aim to listen to women with FM’s experiences as women living with chronic illness, I contacted a chancellery clerk at a patient association in the northern part of Sweden. My supervisors and I were invited to participate in one of their meetings. During the meeting it became obvious that despite the last years’ increased amount of research and knowledge about FM, the situation for women with FM had not increased during the years. Instead, the women with FM said that the climate in society was experienced as harder when ill, and they described it as hard to get support based on their needs. Based on the information from this meeting and previous research about women’s experiences of living with FM, my supervisors and I identified a gap of knowledge in research about women with FM’s

experiences of living with FM. To fully understand another persons’ experience is hard, but according to Söderberg (1999), it is important to listen to the people with chronic illness to gain understanding that enables us to support them based on their individual needs. Therefore, the aim of this thesis was to describe meanings of women’s experiences of living with FM.

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INTRODUCTION

This doctoral thesis focuses on women’s lived experiences of living with FM. Fibromyalgia is a chronic pain syndrome that mainly affects women in middle age. It has been shown to have a major impact on women’s daily lives, with losses and limitations in family, social, and working life. These changes imply a threat to the women’s integrity and sense of human dignity (cf. Söderberg, 1999).

THEORETICAL PERSPECTIVE

This thesis has a life-world phenomenological approach. Life-world as a concept implies that we all are part of an everyday world that is experienced in an uncritical manner; this is our natural life where we conduct our everyday tasks and projects. The everyday world is characterized by what is called the natural attitude, meaning that things in everyday life are presented to us without a need to pay attention to them; we take them for granted (Husserl, 2002). Life-world is a central concept in phenomenology, and phenomenology begins within the life-world as the concrete and lived existence in the life-world (Dahlberg, Dahlberg & Nyström, 2008). Phenomenology aims to go to the things themselves and to do full justice to everyday experience, to the lived experience (Husserl, 1970). In research, the thing is to be understood as the phenomena under study, and for the researchers to go to the things themselves means to position oneself so that the things can show themselves to us (Dahlberg et al., 2008). To be able to do this as a researcher it is important to turn from the natural attitude to the phenomenological attitude, where the taken-for-granted assumptions of the phenomena under study are made conscious to be able to discover the essential meanings of the phenomena (cf. Lindseth & Norberg, 2004). This shift of attitude presupposes an openness, which is characterized by a willingness to see and understand the phenomena under study but also to make us aware of our pre-understanding. Dahlberg et al. (2008) state that openness as a researcher

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entails an ability to be sensitive to the unexpected and not “to make definite what is indefinite” (p. 121).

As the research presented in this thesis is within the frame of nursing research, the chosen life-world phenomenological approach was considered as suitable. In nursing research the life-world perspective creates the opportunity to seek to understand meanings of everyday experiences for people with illness (cf. Dahlberg & Drew, 1997). According to Lindseth and Norberg (2004), essential meanings are the familiar practices of life that has to be expressed through actions, narrations, and reflection. Phenomenology and hermeneutics as concomitants can be fruitful when the aim is to grasp essential meanings of phenomena. According to Ricoeur (1981), phenomenology and hermeneutics are interrelated to each other and presuppose each other, meaning that essential meanings have to be studied and shown through interpretation of the text.

Pre-understanding

As researchers, we have to be open and receptive to the world and the

phenomena that are in focus. We have always an intentional relationship with the objects and events that make up our everyday lives (Dahlberg et al., 2008; Drew, 2001). According to Dahlberg et al. (2008), this means that everything we experience, we experience as something that has meaning for us. Researchers within human sciences, especially in research with the phenomenological philosophy as a base, have to make themselves conscious about their directed awareness about the phenomena under study (cf. Dahlberg et al., 2008). Self-awareness is therefore the foundation of objectivity (Drew, 2001). In phenomenological research, openness is the objectivity that allows the

phenomena under study to appear as it is to us. We can never fully be free from personal beliefs and involvement in the everyday life-world because we are part of that life-world. Objectivity in phenomenological research does not mean

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standing outside the research arena, but rather critically examine one’s own involvement and history with the phenomena under study and question the intentionality which guides human perception (Dahlberg & Drew, 1997).

In the studies (I-IV) presented in this thesis, I strived to keep myself aware of my pre-understanding as a nursing researcher and registered nurse with experience working with people with chronic illness. My supervisors, who all are

experienced nursing researchers and registered nurses, also kept themselves aware of their pre-understanding. During the interviews I did not take anything for granted but checked my understanding by asking probing questions. The interpretation of the interview texts was done as open-mindedly as possible. In relation to my pre-understanding, I broadened my awareness through critical discussions with my supervisors and by studying relevant literature (cf. Lindseth & Norberg, 2004).

BACKGROUND The chronic illness experience

Research about the chronic illness experience is extensive. During the last decade the focus in research about chronic illness has shifted from the outsider

perspective to an insider perspective. In studies about chronic illness from the insider perspective, it is people with chronic illness and their experiences that are in focus (cf. Thorne & Paterson, 2002). In this thesis, it is women with chronic illness (i.e. FM) who are in focus, and therefore the background presentation illustrates a short summary of some of the research on the chronic illness experience from the insider perspective.

Chronic illness has been shown to shape the life of people living with it, and the chronic illness experience has been described as a disruption of everyday life,

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where previous taken-for-granted assumptions and behaviors no longer prevail (Charmaz, 1983, 1987; Corbin & Strauss, 1987; Jeon et al., 2010; Thorne & Paterson, 2002; Toombs, 1993). The changed everyday life is followed by losses and limitations and Charmaz (1983) stated that life with chronic illness implies feelings of loneliness, depression, and being a burden for others.

Studies (Bury, 1982; Corbin & Strauss, 1987; Toombs, 2001) show that one of the main issues for people with chronic illness is their bodily failure. According to Toombs (2001), the body can be experienced as one’s enemy when it no longer functions as before. For people with chronic illness, the feeling of

alienation with one’s own body becomes an everyday feeling. Not being able to perform or to complete actions and tasks as before has shown to lead to feelings of loss of control and dependence on others (e.g. Corbin & Strauss, 1987; Nordgren, Asp & Fagerberg, 2007; Olsson, Lexell & Söderberg, 2008; Strandmark, 2004; Toombs, 1993; Öhman, Söderberg & Lundman, 2003).

Lack of support and understanding is salient for people with chronic illness (e.g. Jeon et al., 2010; Jumisko, Lexell & Söderberg, 2005; Olsson, Skär & Söderberg, 2011; Öhman et al., 2003). When the illness is invisible for others, it has been described as being even harder to get understanding from others, leading to feelings of uncertainty (Bury, 1982; Delmar et al., 2005). Lack of trust, not being listened to, or not being taken seriously mean for people with chronic illness to not be confirmed, and according to Toombs (2001), a negative response from others can create feelings of shame. According to Sundin, Bruce and Barremo (2010), lack of supporting relationships increase feelings of loneliness and dependence on others for people with chronic illnesses. In contrast, to meet others in similar situations, to be met as when healthy, and not to be questioned raise feelings of being valuable and dignified (Jumisko, Lexell & Söderberg, 2007; Olsson et al., 2011).

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Living with chronic illness involves changes, and studies (Delmar et al., 2005; Shariff et al., 2009) have shown that the experience of living with chronic illness has been described as a process to find oneself again to be able to manage daily life. Morse (1997) stated that people with illness, whether acute or chronic in nature, seek self-comforting strategies to preserve the integrity of self; strategies that are used to learn to live despite illness. According to Morse, this can be seen as a process of recovery and rehabilitation. Research about chronic illness experience from the perspective of people living with it has revealed aspects of chronic illness that are healthy, and studies have shown that it is possible to feel well in spite of illness (e.g. Jumisko, Lexell & Söderberg, 2009; Olsson, Skär & Söderberg, 2010; Shariff et al., 2009).

To be able to reach understanding for and to support people with chronic illness based on their needs, research has to focus on people’s experiences of their everyday lives living with and in spite of illness (e.g. Conrad, 1987; Morse & Johnson, 1991). Corbin and Strauss (1987) stated that healthcare personnel need to have knowledge about what people with chronic illness are struggling with. Studies (e.g. Jumisko et al., 2009; Olsson et al., 2008; Sundin et al., 2010;

Öhman et al., 2003) have highlighted the wish of people with chronic illnesses to be a part of their own care. Thorne, Ternulf Nyhlin and Paterson (2000)

conclude that healthcare personnel’s lack of attention regarding the importance of respect, trust, and control in relationships with people with chronic illness

increases the burden that already is salient because of chronic illness.

The chronic pain experience

Living with chronic pain has been described as one of the bodily sensations that disrupt everyday life for people with chronic illness. The chronic pain experience cannot be separated from the chronic illness experience, but as the main focus in

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this thesis is on experiences living with FM – a chronic pain syndrome – I chose to give a short background description of some of the research about the chronic pain experience. Thomas (2000) stated that when people are healthy their bodies are silently performing in contrast to the bodily awareness and consciousness which dominates when living with chronic pain. Chronic pain experience is a whole body experience. According to Scarry (1985), for people in pain the experience is overwhelmingly present, more real than any other human

experience. Its totality absorbs peoples’ whole lives and makes them long for its disappearance. According to Toombs (1993), pain forces the person to shift attention from on-going everyday projects to focus on the bodily disruption, which can lead to feelings of estrangement from their bodies (cf. Bullington, 2009).

According to Leder (1990), there is no escape when in chronic pain, the painless past is forgotten, and the person in pain is thrown to the present, to a present where the harmony between mind, body and world is disrupted (Bullington, 2009). For people with chronic pain everyday functioning is affected with loss of control and a search for an explanation to be able to manage it (Bendelow, 2006; Glenton, 2002). Understanding the pain is important for their ability to integrate body and self (Afrell, Biguet & Rudebeck, 2007) and to find ways of adapting to the pain and incorporating it into everyday life (O’Loughlin, 1999; Shariff et al., 2009).

The pain experience has been described as a private experience that others cannot wholly understand (Scarry, 1985). To be able to manage the pain, it has however, shown to be crucial to have someone who believes that the pain experience is real (Seers & Friedli, 1996). Studies (Clarke & Iphofen, 2005; Lawler, 1999; Madjar, 1999) have shown that people with chronic pain are met with doubt and are questioned in encounters with their family, friends, others in

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their surroundings, and with the healthcare personnel. Group-learning programmes for people with chronic pain have shown to increase their self-awareness, lead to less pain and more constructive ways to handle the pain and its effect on their everyday lives (Steen & Haugli, 2001).

Fibromyalgia – a chronic pain syndrome

Fibromyalgia (FM) is a complex chronic pain syndrome with a symptomatology including musculoskeletal pain characterized as a deep burning pain that varies and radiates in bodily location. Chronic widespread pain is the hallmark symptom of FM, but other common symptoms are fatigue, sleep disturbance, stiffness, dizziness, mood disorder (i.e. depression/anxiety), and cognitive disturbance (i.e. forgetfulness, concentration problems). The temporal nature of the symptoms makes it hard to establish common patterns among people with FM (Arnold et al., 2008; Peterson, 2007).

The worldwide prevalence of FM in the general population has been estimated to be between 0.5 to 5 percent. Of all diagnosed with FM, the majority are women, with a prevalence in 3.4 percent women and 0.5 percent men (cf. Branco et al., 2010; Neumann & Buskila, 2003). Fibromyalgia can affect anyone despite age, ethnicity, or social belonging but is most common among women in their middle age (cf. Branco et al., 2010; Saxena & Solitar, 2010).

The FM diagnosis is based on criteria according to the American College of Rheumatology (ACR) (Wolfe et al., 1990, 2010). To classify FM according to the ACR 1990 criteria the person has to have a history of widespread pain over at least three months and tenderness on 11 of the 18 specific tender points located on the body. Widespread pain is defined as axial skeletal pain, left- and right sided pain, and pain above the waist and below the waist. However, the ACR criteria from 1990 have been discussed and criticized because of the tender point

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requirement, which increases the female predominance of FM. Criticism has also been directed to the focus on pain, meaning that other important symptoms of FM are disregarded (Clauw & Crofford, 2003; Mease, 2005). New criteria have been proposed as a complement in clinical practice. These criteria no longer rely on tender point count but combine a widespread pain index and a symptom severity scale that includes cognitive and somatic symptoms, un-refreshing sleep, and fatigue (Wolfe et al., 2010).

The etiology of FM is still unclear, but genetic factors can predispose people to FM. Environmental factors such as physical trauma or injury, infections and other stressors (e.g. work, life-changing events) can trigger the development of FM (Mease, 2005; Saxena & Solitar, 2010). The pathophysiology of FM is not fully understood, but the heightened pain sensitivity can be caused by imbalance in the central nervous system, the dysregulation of neurotransmitters and

neurohormones. Comorbidities are common, and researchers (Bennett et al., 2007) have shown that low back pain and repeated headaches were the most common. Goldenberg (2008) highlighted the strong evidence for the

interrelationship between depression and chronic pain, for example, which share genetic and phenotypic underpinnings. The unclear etiology and

pathophysiology means that no single therapy is effective. Instead the therapy aims to lessen the symptoms, and studies (Saxena & Solitar, 2010; Staud, 2010) have shown that a combination of different therapies have the best effect for people with FM. Treatment should be based on both pharmacological and non-pharmacological approaches (i.e. multimodal approach), including education about the nature of the illness (Clauw & Crofford, 2003; Huynh, Yanni & Morgan, 2008; Mease, 2005; van Liew et al., 2013). Despite increased knowledge about treatment for FM, recent studies have shown limitations in treatment options (Perrot et al., 2010) and that treatment with the strongest evidence was not always the most used (Robinson et al., 2012). Considering this,

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and the fact that the disability associated to FM does not change much over time, and that distress and self-reported symptoms remains high (Mease, 2005; Walitt et al., 2011), earlier interventions should be prioritized to help people with FM get the right kind of treatment and help to manage daily life (Clauw & Crofford, 2003). To be able to successfully help people with FM, however, it presupposes that they are included in the treatment plans from where individualized treatment programs can be made (Mease, 2005; Paiva & Jones, 2010).

Women’s experiences of living with fibromyalgia

Living with FM means living with an invisible illness with major impact on the women’s daily lives. The taken-for-granted everyday life is disrupted, and according to Söderberg (1999), there is a loss of freedom related to FM. The changes in daily life include family-, working- and, social life, which hinder women with FM from being involved as when healthy (Cudney et al., 2002; Söderberg & Lundman, 2001; Söderberg, Lundman & Norberg, 1999; 2002). Having the will but not the strength to do things caused imbalance in the women’s lives (Söderberg, 1999).

Studies (Sallinen et al., 2012; Schaefer, 1995, 2005; Söderberg, 1999; Söderberg, Lundman & Norberg, 1999) indicate that the time before getting the FM diagnosis had been a long and uncertain search for explanations for the illness experience. To receive a FM diagnosis was therefore seen as a relief and meant confirmation for the illness experience and information that FM is not life-threatening. To receive a FM diagnosis did not, however, give enough information about the illness, which is why the experience of uncertainty remained. People with FM described experiences of being left alone by the healthcare personnel, which forced them to manage their uncertainty and

unanswered questions by themselves (Madden & Sim, 2006; Sallinen et al., 2012; Undeland & Malterud, 2007).

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Pain is the hallmark symptom of FM, and the pain experiences has been described as fluctuating and diffuse (Hallberg & Carlsson, 2000; Sturge-Jacobs, 2002; Söderberg & Lundman, 2001; Söderberg et al., 1999). It has also been shown that the pain experience can be hard to describe explicitly. Women with FM instead used metaphorical expressions to describe pain and related it to be a torture-like experience (Söderberg & Lundman, 2001; Söderberg & Norberg, 1995). Pain led to a changed bodily experience, with feelings of having a worthless and alien body (Råheim & Håland, 2006; Söderberg & Lundman, 2001). The untrustworthy body and the unpredictable character of the pain made it hard for women with FM to plan their daily lives, which led to limitations and feelings of loss of freedom and control (Arnold et al., 2008; LaChapelle, Lavoie & Boudreau, 2008; Råheim & Håland, 2006; Söderberg et al., 1999; Söderberg & Norberg, 1995). Daily life was described as a struggle, and available treatments gave only temporal relief (Söderberg, 1999). According to Hallberg and Bergman (2011), women with FM tried to find balance in daily life by using different strategies such as distracting the pain experience. Managing the pain was described as a way to hinder the pain from taking over and dominating the women’s everyday lives (Hallberg & Bergman, 2011; Råheim & Håland, 2006; Söderberg et al., 1999).

Studies (Gustafsson, Ekholm & Öhman, 2004; Sallinen, Kukkarainen & Peltokallio, 2011; Sallinen et al., 2012) have shown that women with FM described feelings of being understood and confirmed when meeting others with similar experiences as theirs. Their self-esteem increased as they were believed in and trusted. Knowledge about the illness and how to live with FM also increased in the dialogue with others as they shared experiences with each other. To meet others with similar experiences, to be understood, believed, and trusted have shown to be reasons for participation in different support groups for people with FM (Cunningham & Gillings, 2006; Kengen Traska et al., 2011).

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In contrast, it has been shown that women with FM were met with distrust because of the invisibility of the illness (Schaefer, 1995; Söderberg et al., 1999; Rodham, Rance & Blake, 2010; Åsbring & Närvänen, 2002). Others’ negative attitudes led to feelings of loss of oneself and of being less valuable (Söderberg et al., 1999; Rodham, Rance & Blake, 2010). The women had to fight hard to get the illness confirmed (Schaefer, 1995, 1997), and studies have shown that living with an undiagnosed condition, such as FM, means living in uncertainty and not being seen as a credible person (Söderberg et al., 1999; Åsbring & Närvänen, 2002). Women with FM have described how family, friends, and healthcare personnel met them with a lack of understanding, which led to feelings of disappointment. Close relationships with friends and others decreased because others left them and also because of their own withdrawal from relations that were not good for them. Lack of understanding from healthcare personnel led to feelings of powerlessness (Söderberg et al., 1999; Åsbring & Närvänen, 2002). Söderberg (1999) stated that it violates their dignity when women with FM are not seen as credible and are disbelieved about their illness experience.

Pain and other symptoms related to FM have shown to lead to feelings of less well-being among people with FM than others (Liedberg, Burckhardt & Henriksson, 2006; Söderberg & Lundman, 2001). This was described as negatively affecting their quality of life (Arnold, et al 2008; Burckhardt et al., 1997). According to Söderberg, Lundman, and Norberg (1997, 1999), a higher sense of coherence among women with FM was interconnected with a higher degree of well-being. To reconcile with their situation, women with FM could feel better despite their illness (Söderberg et al., 1999). Despite learning to manage the pain, women with FM hoped for relief and recovery from the pain and FM (Söderberg & Lundman, 2001; Söderberg et al., 1999). Hallberg and Bergman (2011) highlighted the importance of health promoting courses focusing on learning to divert attention from pain, which would increase

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well-being and quality of life for people with FM. However, it is important to acknowledge what feeling well means for women with FM.

As there is no available cure currently for FM and the treatment is focused on palliation, the women described that they had to manage daily life with

limitations (Råheim & Håland, 2006; Söderberg & Lundman, 2001; Söderberg et al., 1999; Söderberg, 1999). Through the years they learned to know their bodily signals, which helped them to predict aggravation of the illness (Schaefer, 1995). They were forced to think more of themselves and prioritized daily tasks based on their strength (Söderberg & Lundman, 2001). Despite experiencing a sense of control, the feeling of uncertainty remained because of the unpredictable and fluctuating character of FM (Schaefer, 1995; Söderberg, 1999).

Patient associations

Need of knowledge and information for people living with chronic illness can be a reason to join patient associations (Broom 2005, Carlsson 2005, Söderholm-Werkö, 2008). A desire to influence politicians and healthcare system can be another (Söderholm-Werkö, 2008). According to Carlsson (2005), people with cancer joined the patient association because of the needs the illness created. The needs mentioned, in addition to knowledge, were to meet others with similar experiences and to get support and understanding. However, studies (Ussher et al., 2006) have shown that it is not the type of group that is of importance but whether the group provides mutuality and a sense of belonging, acceptance, and information.

Patient associations in Sweden have a history going back to the beginning of the nineteenth century, with increased success after 1960s. Their aim has been and still is to represent the interest of the disabled and handicapped, e.g. Rheumatism Association and the Fibromyalgia Association. Patient associations are part of the

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nonprofit sector and have their financial basis in membership fees and gifts, but they can also obtain economic support from the government (Lundström & Wijkström, 1997). Patient associations belong to the organizations of benefit to the public, and The National Board of Health and Welfare (2005) in Sweden state that one way to explore peoples’ experiences is through the voluntary associations. Co-operation with the associations is important in strengthening the position of the patient. In a recent study, Kroneman, Cardol, and Friele (2012) showed that patient associations in several European countries have an important role as advisory boards in a social support system. Carlsson (2005) highlight the importance of not losing the ‘patient perspective’ for the benefit of the

perspective of the professionals. She further notes that this shift of focus could decrease the patient’s possibility to push their questions forward. Zimmerman et al. (2005) showed that patient associations play an important role for people with psoriasis. They provide support for people with illness, supply physicians with education about the illness, and assist people to meet others with similar experiences to theirs.

Söderberg (1999) showed that being understood and accepted gave women with FM feelings of relief and of not being alone. For them, sharing and participating with others in similar situations created feelings of familiarity and being at home. At the same time, the lack of support and understanding was salient. Related to the above descriptions of patient associations, we can assume that they can be for beneficence also for women with FM. Research on how women with FM experience patient associations are scarce, however, which is why this is in focus in paper IV presented in this thesis.

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RATIONALE

In summary, the literature review shows that research about living with FM is extensive and that living with FM has a major impact on daily life. Research about women’s experiences of living with FM has shown that the women live with constant pain and fatigue, which limits family-, working-, and social life and in turn leads to isolation and feelings of loss of self. Distrust from others have been described as influencing the self-esteem among women with FM, which in turn leads to lack of control and decreases their possibilities to influence their lives. Despite extensive research about FM and increased knowledge about living with FM, there is a gap of knowledge about meanings of pain, meanings of being received and met by others as experienced by women with FM. Meanings of feeling well, and also the experiences of associations among women with FM are also sparsely studied. This thesis can deepen the understanding for the lived experiences of women with FM and increase their possibilities to get help and support based on their needs.

AIM OF THE THESIS

The overall aim of this thesis was to elucidate meanings of living with FM as experienced by women with FM. From the overall aim, the following specific aims were formulated:

- to elucidate meanings of pain for women with FM (I)

- to elucidate meanings of being received and met by others as experienced by women with FM (II)

- to elucidate meanings of feeling well for women with FM (III) - to describe women with FM’s experiences of associations (IV)

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METHODS Setting

This research was conducted in the northern part of Sweden and included women with FM (I-IV).

Participants and Procedure

Paper I

Fifteen women with FM participated in this study (Table 1). The sample was purposive and the criterion for participation was that the women were diagnosed with FM in accordance to the ACR criteria (Wolfe et al., 1990). The women’s ages ranged from 38 and 64 years (md= 54), they had experienced symptoms between 6 and 38 years (md= 25), and time range since they had been diagnosed varied from 1 to 20 years (md=10). Nine women were married, two were cohabiting, and four were single. All fifteen women had children, from whom five had minors living at home. Eleven women had vocational education, three had elementary schooling, and one had some university education. Six of the women were on sick leave, four were employed or job-seeking, three received state pension, and two received disability pension.

The women were recruited from the Associations for Rheumatology and Fibromyalgia (n=11) and a rehabilitation centre (n=4). The Presidents of the Rheumatology Associations and Fibromyalgia Associations and the head of the rehabilitation centre gave information about the study and its nature to their association members and patients. Fifteen women accepted to participate in the study and were given a letter containing information about the study, including a reply form where a written consent regarding participation could be given. After

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receiving their permission I contacted the women in order to give them further information and to make appointments for interviews.

Paper II

Nine women with FM participated in this study (Table 1). The sample was purposive, and the criterion for participation was women with FM, aged between 18 to 65 years. The women who chose to participate were from 40 to 65 years in age (md=59), they had experienced symptoms between 6 to 50 years (md=28), and the lapse since diagnosis ranged from 6 to 23 years (md=12). Seven women were married, one was cohabiting, and one was single. Eight had children, from whom two had minors living at home. Two women had

vocational schooling, five had secondary education, and two had university education. Three women were employed or job-seeking, two were working part time with part time sick leave, three received disability pension, and one received state pension.

The women were recruited with help from contact persons at the Associations for Fibromyalgia (n=8) and a Study Association (n=2). The contact persons handed out information about the study to their members. Ten women agreed to participate and gave their consent for further contact. I made telephone contact with the women to give them further information about the current study and to make appointments for the interviews. One of the ten women did not fulfil the criteria for participation and therefore did not participate in this study.

Paper III

Thirteen women with FM from the study presented in Paper I participated in this study (Table 1). The women’s ages ranged from 38 to 64 years (md=55), they had experienced symptoms between 7 to 38 years (md=25), and the time

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lapse since diagnosis ranged from 2 to 21 years (md=11). Seven women were married, two were cohabiting, and four were single. All thirteen women had children, from whom three had minors living at home. Five women were on sick leave, three were employed or job-seeking, three received a state pension, and two received a disability pension.

All fifteen women from the study presented in Paper I agreed to also participate in this study (III). Two of them, however, were not available at the time for telephone contact, which is why they did not participate in this study. I had telephone contact with thirteen women to give them further information about the current study and make appointments for the interviews.

Paper IV

Seventeen women with FM participated in this study (Table 1). The sample was purposive and the inclusion criteria were that the women had FM, were aged between 18-64 years, and were members of an association for people with FM. The women’s ages ranged between 36 to 64 years (md=60), they had

experienced symptoms for 8 to 38 years (md=21), and the lapse since diagnosis ranged from 1 to 25 years (md=11). The women were divided into four groups, with three to six women in each group based on when they had the opportunity to participate in the focus group discussion. Four groups were judged to be sufficient since the same kind of descriptions occurred from group to group.

The women were recruited with help from contact persons at the Associations for Rheumatology and Associations for Fibromyalgia. The contact persons sent information letters to their members with FM (n=25). Nineteen women agreed to participate and gave their consent for further contact. I contacted each one of the women, gave more information about the study, and made an appointment for the interviews. At the time for the interview, two of the nineteen women

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informed that they did not have the strength to participate because of the aggravation of their illness, which is why they did not participate in this study.

Table 1. Characteristics of the participants

Paper I II III IV Women with FM n=15 n=9 n=13 n=17 Age, years Median 54 59 55 60 Range 38-64 40-65 38-64 36-64 Duration of symptoms, Years 6-38 6-50 7-38 8-38 Median 25 28 25 21

Time since diagnosis,

Years 1-20 6-23 2-21 1-25

Median 10 12 11 11

Data Collection

In the studies presented in this thesis (I-IV), qualitative research interviews have been conducted. According to Kvale and Brinkmann (2009), qualitative research interviews aim to gather nuanced descriptions of the interviewee’s lived

experiences from their perspective. It has similarities with ordinary conversations but differs as it has a specific aim, which means that there is an imbalance in the power relation between the interviewer and the interviewee. Qualitative research interviews can be obtained in different ways and Kvale and Brinkmann (2009) state that the different interview methods are tools the researcher choose between, depending on the aim of the study. In the studies presented in this

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thesis, narrative interviews (I, II, III) and focus group discussion (IV) are the interview methods used. Data collection was conducted during 2009 (I), 2012 (II), 2010 (III), and 2011 (IV).

Narrative Interviews

Personal interviews with a narrative approach have been conducted in paper I, II, and III (cf. Mishler, 1986; Sandelowski, 1991). The purpose of the narrative interview is to create a condition for understanding the meanings that emerge during the dialogue (Mishler, 1986).

The interviews in study I and II were conducted as personal face-to-face

interviews. The women were asked to talk about their experience of pain (I) and their experiences of being met and received by others (II). Clarifying questions were asked when needed, e.g. “What did you feel?” and “Can you give an example?” The interviews in study I took place in the women’s homes (n=13) and at the association (n=2). The interviews in study II took place in the women’s homes (n=6), at their work (n=1), at the association (n=1), and at the university (n=1). All places for interviews were chosen in accordance to with women’s wishes. All interviews were recorded, lasted a median 76-82 minutes, and were later transcribed verbatim.

The interviews presented in study III were conducted as personal telephone interviews. My choice of telephone interviews was related to the long

geographical distance (cf. Kvale & Brinkmann, 2009). Polit and Beck (2012, p. 265) state that telephone interviews are convenient when there has been prior personal contact between the interviewer and the interviewees’, as was the case in this study. The women were asked to talk as freely as possible about when they feel well. Questions for clarification were asked when needed, e.g. “What did you feel then” and “Can you give an example?” All interviews were

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recorded, lasted between 20 and 61 minutes (md=44), and were later transcribed verbatim.

Focus group discussion

Data presented in study IV were collected through focus group discussions (FGD). Morgan (1997) states that focus group discussions can, because of the interaction between the group participants, generate data that would be difficult to obtain otherwise. According to the aim of study, I and my supervisors

considered it to be appropriate with FGDs as the interaction facilitates discussion about the focus of the study, experiences of associations. Before the FGD started, I as a moderator held a short introduction. According to Morgan (1997), the moderator’s role is to help the group discuss the topic in focus. The participants were informed about the aim of the study, the topic for the discussion, and that the content of the discussions should not be discussed elsewhere. Before the FGDs started, the participants gave a brief self-introduction, which according to Morgan (1997) is an ice-breaker and sets the mood for the group as a whole. Thereafter the FGDs started with a broad question where the participants were asked to talk about their experiences of joining the FM association, and then they moved to the more specific topic, where the participants were asked to talk about what the association meant for them (cf. Morgan, 1997). An interview guide was used with the aim to keep balance between the focus of the study and the group’s discussion (cf. Morgan, 1997). I encouraged the participants to answer and comment to each other during the discussion and raised clarifying questions when needed. One of my supervisors summed up the discussion.

All participants in the FGDs met twice. The second FGD was a follow-up meeting in which I as moderator gave a summary of the first FGD. This gave the participants the possibility to develop their discussion and me to ask developing questions. The first FGDs lasted between 21 and 74 minutes (md=40) and the

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second lasted between 34 and 44 minutes (md=35); the FGDs were recorded and later transcribed verbatim. The FGDs were carried out around a conference table in a quiet room at the association. Morgan (1997) states that this kind of

environment is the most suitable as participants and the researchers can see each other and as it facilitates the recording of the discussion.

Data Analysis

In this thesis, two qualitative methods have been used: phenomenological hermeneutic interpretation (I, II, III) and thematic content analysis (IV).When choosing a method to achieve understanding of meanings, Bengtsson (2005) stated that a demand on the choice of method is its ability to give justice to the life-world. Different research methods therefore can be used, but they have to be consistent with each other and adequate for the research question. The choice of methods in this thesis was based on the aims of the studies.

Phenomenological hermeneutical interpretation

The studies presented in Papers I, II and III in this thesis were analysed with a phenomenological hermeneutic interpretation developed by Lindseth and Norberg (2004) and inspired by the philosophy of the French philosopher Ricoeur (1976). The aim of this method is to gain a deeper understanding of essential meanings of the phenomenon under study through interpretation of text (i.e. written narratives about lived experiences). Interpretation of text means to see something new in what is already given; according to Ricoeur (1976), the experience of a phenomenon always remains private, but its meaning becomes public through interpretation. The method consists of three phases: the naïve understanding, the structural analysis, and the comprehensive understanding. There is a dialectic movement between the whole and the parts of the text, between explanation and understanding, which in this method means that the

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process between the phases is not a linear one but has an inner dialectic with a move from understanding to explanation and then a move from explanation to comprehension.

In the studies presented in Papers I-III, the interpretation started with reading the text several times as open-mindedly as possible in order to grasp the meanings as a whole; experience of pain (I), experience of being received and met (II), and experience of feeling well (III). The naïve understanding was formulated from this reading. According to Lindseth and Norberg (2004), it is important to be open in this phase to allow the text to present itself to us. Ricouer (1976) stated that this first understanding is a naïve grasping of the meaning of the text as a whole (p. 74).

The next phase, the structural analysis, was guided by the naïve understanding. The structural analysis aimed to explain the text as objectively as possible and to validate the naïve understanding (Lindseth & Norberg, 2004; Ricoeur, 1976). In the structural analysis, the text was divided into meaning units guided by the aim of the studies (I-III). The meaning units were then condensed into formulated meaning units that were sorted into sub-themes based on similarities and differences. The sub-themes were then abstracted into themes. In order to achieve validation, the sub-themes and themes were compared with the naïve understanding.

The final phase, comprehensive understanding, was developed from and supported by the naïve understanding, the structural analysis, our

pre-understanding, and the literature (cf. Lindseth & Norberg, 2004; Ricoeur, 1976). In this phase the aim is to re-contextualize the text with help from literature with a focus on the future more than the past, meaning that the focus is more on what

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the text talks about than on what the text says (Lindseth & Norberg, 2004; Ricoeur, 1976).

Thematic content analysis

The study presented in Paper IV was analyzed with a thematic content analysis method (cf. Downe-Wamboldt, 1992; Baxter, 1991). Thematic content analysis aims to provide knowledge and understanding about the phenomena in focus, i.e. women with FM’s experiences of associations (IV). It can be described as a process of identifying the primary pattern in the data, i.e. the content. Through analyzing both at the underlying meanings (latent) of the text and the visible (manifest) components, it is possible to gain both a deeper and a specific understanding of the phenomena under study (cf. Downe-Wamboldt, 1992).

Thematic content analysis implies a systematic process with a movement back and forth between the text and the output of the content analysis (cf. Downe-Wamboldt, 1992). The following steps were taken during the analysis of data presented in study IV. The interviews were first read several times to get a sense of the content. After this, the text was divided into units of analysis that were guided by the aim of the study. The units of analysis were condensed and sorted into categories (cf. Downe-Wamboldt, 1992). The categories were then

subsumed into themes, i.e. an overall interpretation of patterns concerning similarities and semantic relationships (cf. Baxter, 1991). Finally, the interviews were reread for verification and to validate the themes. The process of analysis lasted until consensus was reached regarding categories and themes to assure the credibility and trustworthiness of the method (cf. Downe-Wamboldt, 1992).

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ETHICAL CONSIDERATIONS

Before the interviews, all participants in the studies presented in Papers I-IV were given verbal and written information about the nature of the study. They were reassured that their participation was voluntary and that they could withdraw from the study at any time without giving any explanation. According to Kvale and Brinkmann (2009), full information about the aim and procedure of the study protects the participant’s rights and assures that they are not harmfully treated. This presupposes that the information given is understandable.

Therefore, the written and verbal information to the participants in the studies (I-IV) was formulated without unnecessary terminology and without the aim to influence their decision to participate (cf. Polit & Beck, 2012, p.159).

All participants in the studies (I-IV) gave their written consent and were guaranteed confidentiality and an anonymous presentation of the findings, meaning that no information about their identity would be presented in the studies. According to Oliver (2003), one of the cornerstones in research ethics is the participant’s opportunity to be anonymous. Polit and Beck (2012, p. 162-163), however, state that anonymity is almost never possible in qualitative studies, as the interviewer and the interviewee are involved with each other. In the studies (I-IV), the participants were not anonymous for me as interviewer, but a permissive climate was possible with the promise of confidentiality. According to Lindseth and Norberg (2004), this is important so the interviewees can feel free to narrate their lived experiences. In the FGDs in study IV the women were not anonymous for each other, but they were informed of the importance of not talking about the topic under discussion elsewhere. This is important in order to create a permissive and secure environment (cf. Morgan, 1997).

The ethical principal about beneficence means that the risk for the participants is less than the beneficence of the study (cf. Polit & Beck, 2012, p. 156). Kvale and

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Brinkmann (2009) state that as the qualitative interview situation can be open and intimate, it can lead to the participants narrating more than they had the intension to do or touching on areas they would not prefer to talk about (cf. Oliver, 2003). During the interviews presented in the studies I-IV, I tried to be sensitive to the participant’s narrations and let them narrate at their own pace, which facilitated the participant’s possibility to narrate their lived experiences. Oliver (2003) states that there is a potential to cause distress for the participant’s when they relieve experiences that create strong feelings. However, to avoid these narrations could decrease the possibility to generate useful data. After the interview situations I remained for a while so the participants could reflect and debrief as needed. They were also informed that they could contact me by telephone whenever needed. All participants described a wish to narrate their experiences as they felt they could be a help to others in similar situations. To also take a part in increasing knowledge about FM was described as a motivation to be a part of the research project. People can enjoy being interviewed as it is their views that are in focus and their stories and experiences that are the centre (Oliver, 2003).

The Papers I-IV presented in this thesis was approved by the Regional Ethics Review Board (Dnr. 09-066Ö).

FINDINGS

The findings from the four papers are presented separately. The themes are marked with italics in the respective papers. The findings are presented in Table 2.

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Table 2. Overview of findings: themes, sub-themes, and comprehensive understanding (I, II, III) and themes and categories (IV)

Paper Findings

I Experiencing an unwilling body

Living with an invisible change in the body Feelings of being constrained by an unfamiliar body

Trying to endure an overwhelming feeling of unpredictability Experiencing a good life despite all

Finding relief through distraction Feelings of reconciliation

Meanings of pain are living with a double burden: living with an aggressive, unpredictable pain and being doubted by others because of the invisibility of the pain.

II Being seen as a malingerer

Being disbelieved Being questioned Being ignored

Missing mutual understanding Being acknowledged

Being trusted and believed in Being cared for and appreciated

Meanings of being received and met can be understood as a dialectic movement between two simultaneous perspectives. Women with FM are seeking a shield in order to feel less vulnerable as they are being disbelieved. Simultaneously to be acknowledged induced feelings of security but was not something the women could take for granted.

III Having strength to be involved Being in control

Having power Finding one’s own pace Feelings of belonging

Meanings of feeling well are to have the strength to be involved. Managing daily life independently with support from family and friends enabled the women to be active in chores that made them feel well.

IV Being in communion

Feelings of belonging and togetherness Being understood and listened to Being committed

Getting strength from support Meeting expectations from others Having expectations of oneself Increasing understanding

Having access to information Mediating information

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Paper I

Living with a double burden: Meanings of pain for women with fibromyalgia

This study elucidates meanings of pain for women with FM and suggests that meanings of pain for women with FM can be understood as experiencing an

unwilling body and experiencing a good life despite all (i.e. the two themes). Meanings

of pain for women with FM were interpreted as living with a double burden: living with an aggressive, unpredictable pain and being doubted by others because of the invisibility of the pain. The ever present pain was described as unbearable and overwhelming and dominated the women’s whole life. Despite this, the women described themselves as living a good life.

Experiencing an unwilling body was related to living with an invisible change in the

body, feelings of being constrained by an unfamiliar body, and trying to endure an overwhelming feeling of unpredictability. Women with FM described how their body was in pain all the time, but as the pain was invisible for others, they felt that they were being questioned. Their credibility was questioned when doing ordinary daily chores, and this led to feelings of sadness and anger. The women with FM described that their bodies felt changed compared to when they were healthy. The ever-present pain and other bodily sensations altered their ability to live as before. There was a will to do things, but daily chores demanded reflection to allow body and mind to cohere. As the pain was always present, the women with FM described how they felt overwhelmed by the constant,

unpredictable, and unbearable pain. The women described dimensions of their pain experience: as the everyday pain that was manageable and the intense pain that made the women feel that their daily life was controlled by the pain. The unpredictability of the pain influenced the women’s daily lives and impacted their possibility to find relief and take control.

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Experiencing a good life despite all was related to finding relief through distraction

and feelings of reconciliation. Women with FM described how they could distract their minds from the pain by focusing on daily chores. Through this they could find relief and described it as being worthwhile despite resulting in

increased pain. Being with friends was described as a way to focus on other things than pain, and the women described finding meaning in helping others. This was described as important for their self-esteem and gave them strength to keep control. Through adapting to everyday life and find new ways of being, they learned to maintain balance between activities and pain. This had taken a long time, and the women described that they learned to live with the pain but did not accept it. Despite limitations because of the unpredictable, ever-present pain, the women with FM felt free to do what they wanted. Pursuing everyday life under new conditions enabled them to retain old interests and participate in associations and work. They had nourished a hope for recovery but had

reconciled with the fact that pain was a part of their everyday life.

Paper II

Meanings of being received and met by others as experienced by women with fibromyalgia

This study elucidates meanings of being received and met by others as experienced by women with FM. This study suggests that meanings of being received and met by others as experienced by women with FM is a dialectical movement between two simultaneous perspectives; being seen as a malingerer and

being acknowledged (i.e. the two themes). Women with FM are seeking shield in

order to feel less vulnerable as they are being met with disbelief and ignorance. There is a feeling of estrangement because of the lack of mutual understanding

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with others. To be acknowledged induced feelings of security and trust but was not something the women could take for granted in their encounters with others.

Being seen as a malingerer was related to being disbelieved, being questioned, being

ignored, and missing mutual understanding. Women with FM described that they had been met and received with distrust as FM was not visible to others. The women were convinced that it would be easier to get understanding from others if there were visible signs of FM or a need to use aids. To feel more alert and less vulnerable, the women with FM described it being important to look fresh, which further increased others’ distrust. Their healthy appearance was described as leading to demands from others that were equal to when they were healthy or to sharp-worded comments when not being able to join different activities. It was described as hurtful and led to withdrawal from relationships. The women with FM described that they were questioned at their work due to their invisible illness. Despite efforts of trying to explain their situation at work, they did not receive understanding and respect. There was no interest of adapting the work to suit them, and the supervisors and colleagues demanded them to do the same tasks as everyone else. This was described as making the working day tough. Being forced to resign or look for another job because of being on sick leave was described as inconceivable.

When seeking help from healthcare, women with FM described not being listened to or taken seriously. As blood samples and X-rays did not show anything, healthcare personnel met them with a shrug and demanded they have patience. The women described that they were seen as hypochondriacs and as “stinging, pain, and burn bitches”, which gave feelings of sadness and

disappointment. As the healthcare personnel neglected them, they felt powerless, and to continuously be disregarded led to feelings of worry when in need of healthcare. Despite the reason for contact with the healthcare, women with FM

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described all symptoms as being related to FM. They described the lack of engagement and interest from healthcare personnel as worsening their health and affecting their whole life. Women with FM also described being received and met with lack of understanding in their families. The women were expected to join common activities with family and friends as before and were advised to put themselves together when they did not have the strength to participate. They experienced themselves as being taken for granted in their families and described feelings of disappointment when the family members did not see how they felt.

Being acknowledged was related to being trusted, believed in, being cared for, and

appreciated. Women with FM said that their credibility increased when they were met with understanding and support at their work. At times of aggravation in the illness, supporting and understanding colleagues were described as

invaluable since they took care of them and reduced their workload. Women with FM described feelings of gratitude when being listened to and taken seriously, as they were not used to be received ad met in that manner. They felt lucky when healthcare personnel were interested in listening to their stories and willing to help them. To be met with honesty, interest, and engagement enabled a dialogue and allowed the women to be a part of their treatment. A trusting relationship with healthcare personnel and authorities decreased their need of contact. However, the women also described feelings of sorrow at not having had the luck to meet these understanding people from the beginning as it would have spared them years of worry and pain. Women with FM described it as strengthening to be met with understanding in their families. Especially if the husbands learned to observe how the women felt and were helpful and

supporting at home and in contacts with healthcare and authorities. The women, however, also described the importance of being needed, as it made them feel valued. The women with FM described being received and met with

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pain- or Internet groups, or with close friends, they had a possibility to talk about everything based on their needs without fear of being disbelieved. To be wished for and welcomed was described as strengthening and gave them the spirit to continue struggling.

Paper III

Meanings of feeling well for women with fibromyalgia

This study elucidates meanings of feeling well for women with FM and suggests that it is possible to feel well despite living with FM. Feeling well for women with FM is interpreted as having strength to be involved (i.e. the theme) and was related to being in control, having power, finding one’s own pace, and feelings of belonging.

Women with FM described that to feel well demanded engagement and was not something that occurred by itself. They did whatever needed to feel well, as it was important to not let the illness take over their everyday lives. Feeling well was possible through contacting friends, doing daily chores, and trying to appreciate the small things in life. The women gained willpower from their engagement in everyday life and described feeling well when having strength to do ordinary daily chores independently. To sometimes have enough strength to be more socially active was described as giving them a good feeling throughout their body and made them feel almost as they did when they were healthy. The light and warm summer weather was described as strengthening and enabled them to enjoy life more fully. The ability to be more active was described as strengthening their vitality. For the women who were working, the work was an important part of their everyday lives; it was described as meaningful and made them feel well. Finding one’s own pace and avoiding stressful situations enabled women with FM to feel well despite pain and fatigue. Taking one day at the

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time, prioritizing, and thinking positively were ways of saving energy, which meant that the women could feel well for a longer time. Demands from one’s self and from others decreased the women’s possibilities to feel well, which is why they described it as important to sometimes push them aside to be able to feel well. To be listened to and acknowledged as the women they really are made them feel well, and feeling well was strongly related to relations with other people. The families was described as a source of well-being and as an invaluable support that made the women with FM feel needed, loved, secure, and happy. Friendship and good social relations were important for feeling well, especially for the single women or the women who lacked support in their families. To be able to help and support others, to meet friends at the association, and to meet others with similar experiences gave rise to feelings of understanding and being worthy. Togetherness and belonging helped the women with FM to break the threatening isolation.

Paper IV

Women with fibromyalgia’s experiences of associations

This study describes women with FM’s experiences of associations for people with FM and suggests that FM associations play an important role for women with FM. The FM association can be seen as a complement to healthcare. At the FM association the women get confirmation for their illness experience, receive information and support, and can communicate with people with similar

situations based on shared understanding. The FM association seems to empower women with FM to manage to live with illness in the best way for them. This was interpreted in the three themes: being in communion, being committed, and

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Being in communion was related to feelings of belonging and togetherness and

being understood and listened to. At the FM association the women with FM described receiving information and getting their need of togetherness fulfilled. The belonging and togetherness at the FM association was described as joyful and a way to break their isolation. Some of the women had a more skeptical view of the FM association and prioritized other associations because of specific interests. Women with FM described having a need to meet others with similar

experiences, which was possible at the FM association. At the association the women were allowed to talk about whatever they wanted according to their needs, and the FM association was described as a place where they were understood and listened to. Despite supporting families, the others at the FM association described it as important to be able to unburden their families. As others lacked understanding for their experiences, the possibility to confide did not exist elsewhere. Women with FM felt that they were believed and met with honesty at the association, which suggests that the FM association offers a kind of consolation.

Being committed was related to getting strength from support, meeting

expectations from others, and having expectations of oneself. Women with FM described it as important to be needed, which they described as being fulfilled at the FM association. Confirmation and support were prerequisites to having the strength to continue the engagement at the FM association, and managing to do things was described as increasing their self-esteem. To join activities and meetings could be exhausting but was also described as a way to distract pain. The women with FM described a need to engage other members in

arrangements at the FM association. This was seen as important because the expectations on the members of the board were higher than on other members. Women with FM said that they also had expectations for themselves and that these expectations were higher at the FM association than at other associations.

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There was a fear of burdening the other members if not being able to manage one’s own tasks. Therefore, the women described the freedom to choose the amount of engagement as important.

Increasing understanding was related to having access to information and mediating

information. The FM association was described as a good source for acquiring information about FM. Previous attempts to get information from healthcare personnel had not been satisfactory, as the women with FM described been met with lack of knowledge. At the FM association they could receive information through meeting each other but could also use the other sources that the association offered such as the Internet, Facebook, telephone contact, and the association’s journal. The FM association was described as being an important source of information and as having the possibility to mediate information about FM to others. Their membership was seen as a way to support research and development, which in turn could increase knowledge about FM among others. The Internet was described as a way to achieve this goal but was only seen as a complement to physical meetings. The women with FM expressed skepticism to a higher degree of information through the Internet as it was conceived as an artificial environment and was not described as providing a true understanding of another person.

DISCUSSION Interpretation of the findings

The overall aim of this thesis was to elucidate meanings of women’s experiences of living with FM. This thesis suggests that meanings of women’s experiences of living with FM can be understood as a striving for balance, because a split between their own needs and others’ expectations existed in all parts of the women’s everyday lives. The women tried to keep control over the ever-present

Figur

Table 1. Characteristics of the participants

Table 1.

Characteristics of the participants p.30

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