Coping with fibromyalgia - a focus group study

ABSTRACT

Purpose

Fibromyalgia affects patients’ quality of life. Therefore, an essential part of patients’ medical management is to develop appropriate coping strategies. This study aimed to obtain a comprehensive picture of patients’ cognitive and behavioural strategies to cope with fibromyalgia.

Methods

A qualitative design was conducted based on the grounded theory method. Two focus group discussion sessions were held with 15 Israeli women diagnosed with fibromyalgia. A constant comparative analysis method was utilized.

Results

The findings of themes related to women’s coping with fibromyalgia included: Emotional coping, with two categories: (a) from repression and despair to acceptance and completion, and (b) a range of negative and positive emotions; Practical coping, with three categories: (a) the agonizing process of receiving/internalizing the diagnosis, (b) living with the symptoms, and (c) changing lifestyle; Coping with the social environment, with three categories: (a) sharing vs. concealing, (b) social connection—disconnection, and (c) environmental resources. In addition, we identified a theme on the patients’ perceptions of the causes of their fibromyalgia that effect their coping, with three categories: (a) demanding lifestyle; (b) traumatic life events; and (c) personality trait—perfectionism.

Conclusion

It would be desirable for rheumatology units to have an interdisciplinary professional team to work together with patients to consider how best to manage and effectively cope with their condition.

KEYWORDS:

• Fibromyalgia
• coping
• focus group
• constant comparative analysis
• women

Introduction

Fibromyalgia (FM) is an idiopathic chronic pain disorder characterized by extensive musculoskeletal pain with associated symptoms of fatigue, sleep disturbance, mood disturbances, depression, anxiety, and cognitive problems (e.g., forgetfulness, reduced concentration, mental slowness, and attention problems) (Chang et al., 2020; Wolfe et al., 2010). The numerous somatic, functional, and emotional symptoms often cause a decline in patients’ daily activities and reduces their ability to function physically, psychologically, and socially (Bucourt et al., 2021; Galvez-Sánchez et al., 2019; Muller et al., 2017). Fibromyalgia affects approximately 2.6% of the Israeli population (Barski et al., 2020), and between 2% and 4% of the general population worldwide (Branco et al., 2010; Sarzi-Puttini et al., 2020). The prevalence in females is up to eight times higher than that in males (Neumeister & Neumeister, 2020).

The pathophysiology of FM remains unknown although some factors such as genes, negative life events, and physical trauma are known to predispose individuals to the condition (Bair & Krebs, 2020; Bohn et al., 2013). The diagnosis of FM relies upon clinical assessment and the patient’s medical history, as there are no objective markers to distinguish FM from other rheumatologic or neurologic disorders (Bair & Krebs, 2020). As such, the diagnosis of FM may take years after patients have visited numerous medical specialists (Galvez-Sánchez & Del Paso, 2020; Sarzi-Puttini et al., 2020). Essentially, FM can only be established once other conditions have been ruled out (Galvez-Sánchez & Del Paso, 2020; Undeland & Malterud, 2007). In addition, it has been shown that FM patients have a significant amount of various psychiatric comorbidities such as depression, panic disorder, and anxiety disorder (Pernambuco et al., 2017). These psychiatric aspects may have a predictive value on somatic symptoms such as pain, weakness, sleep disturbance, and forgetfulness, which might cause more severe FM clinic and symptoms in general (Cetingok et al., 2022). Thus, a psychiatric assessment may be useful to uncover psychiatric comorbidities and adjust appropriate treatment to FM patients (Bair & Krebs, 2020). The appropriate therapy for FM is tailored to the patient and includes various interventions. These consist of combinations of pharmacological and other treatments such as, cognitive behavioural therapy, mindfulness, low-impact exercise (walking, swimming, or yoga), stress management, relaxation therapy, and psychoeducation (Bair & Krebs, 2020; Galvez-Sánchez et al., 2019). Consistent treatment adherence in FM patients is associated with better mental and physical health-related quality of life (Oliveira Júnior & Ramos, 2019), and lower nonprescription medication use. However, FM patients have poorer treatment adherence and less compliance with prescribed medical regimens than other chronic disease groups, since they usually report on bad experiences with the healthcare system (Rowe et al., 2019). Specifically, FM patients’ unintentional non-adherence has been associated with lower disease activity, less use of instrumental coping (i.e., task-oriented strategies to deal with the illness), and a higher discrepancy between patient—physician communication and satisfaction. Likewise, intentional non-adherence was predicted by shorter duration under a rheumatologist’s care and higher patient—physician discordance (Sewitch et al., 2004). Intentional non-adherence was predicted by shorter duration under a rheumatologist’s care and higher patient—physician discordance.

Fibromyalgia can be seen as a condition that represents a mind—body hyper-connection. Consequently, non-pharmacological treatments need to be included in holistic and comprehensive interventions aimed at managing FM. Cognitive-behavioural therapy (CBT) is the most widely studied and practiced psychotherapy for FM. It focuses on identifying maladaptive thoughts and developing effective coping strategies and behaviour (Sarzi-Puttini et al., 2020). A recent systematic review (Bernardy et al., 2018) revealed that patients who received CBT may show greater improvements in pain, physical functioning, and mood than patients being treated with other non-pharmacological methods. Accordingly, CBT may improve FM patients’ quality of life.

Previous qualitative research, specifically using focus groups, has supported the impact of FM on patients’ quality of life. For example, 2018) described that people with FM reported being unable to perform their usual mental and physical activities and that their previous sense of self had been lost, with resulting psychological effects such as depression, anxiety, and distress. Likewise, Arnold and colleagues (2008) described social problems such as isolation and problems with maintaining connections with family and friends, reduced leisure and daily living activities, avoidance of exercise, and an inability to advance in a career among FM patients. In fact, the most frequent themes in these patients’ experience are poor functional performance, distress, lack of credibility, uncertainty, pain acceptance, and social stigma (Armentor, 2017; Galvez-Sánchez et al., 2019; Quintner, 2020; Sim & Madden, 2008).

The impact of FM on patients’ closest environment is very complicated and complex to establish (Rodríguez Pérez, 2020). Cooper and Gilbert (2017) have noted that the family plays an important role in accepting the diagnosis, adapting to the demands of the disease, and seeking help from health professionals. However, 2022) demonstrated that family members perceive FM mainly as a psychological problem rather than a physical problem that involves an emotional burden and over-protection of the FM patient. This discomfort accordingly drives family caregivers to distract themselves from the situation and involve themselves in other activities outside the home.

Given the above, an essential part of FM management seems to be developing appropriate coping strategies (Bucourt et al., 2021; Mazo & Estrada, 2020), that may improve both patients’ and family members’ quality of life and well-being. In this study we aimed to obtain a comprehensive picture of the cognitive and behavioural strategies applied by FM patients as an outcome of the diagnosis process, adopting behaviours to manage the symptoms, and the attitude and support they receive from their immediate environment (e.g., family, significant others, and friends).

Lazarus and Folkman (1984) refer to coping as “cognitive and behavioural efforts to master, reduce, or tolerate the internal and/or external demands that are created by the stressful transaction” (p. 843). They propose two major forms of coping strategies: problem-focused and emotion-focused strategies. The first one aims at looking for and delivering resources to solve or constrain stressful problems while the latter deals with the ways of alleviating the emotional strain caused by the stress irrespective of the situation (Lazarus & Folkman, 1984). Lazarus (1999) states that individuals apply both the problem- and emotion-focused strategies in stressful situations depending on the way they appraise the situation. Regarding chronic pain (e.g., FM), it seems that problem-focused strategies may decrease stress and induce better well-being, while emotion-focused strategies may yield an additional positive outcome in a situation considered unmodifiable (1999). In the arena of FM, Boehm and colleagues (2011) revealed that effective emotion-focused strategies significantly contributed to patients’ functioning and their quality of life. Similarly, 2016) demonstrated that problem-focused coping strategies were found to have a positive impact on life satisfaction in patients with FM.

The current study

This study aimed to obtain a comprehensive picture of the coping strategies of Israeli women diagnosed with FM. Focus group sessions were conducted to capture their perspectives and explanations for their behaviours and cognitive efforts to cope with FM. Increasing the knowledge and understanding of such patients’ coping strategies to manage FM may positively contribute to the practice of health professionals and highlight the importance of how they communicate with these patients and how patients view their personal and environmental interactions.

Methods

Design

The study employed a qualitative design based on the grounded theory method with focus group discussions (Glaser & Strauss, 1967). Grounded theory is the discovery of theory from data. The theory evolves during the research process and is produced from the continuous interplay between data collection and analysis (Corbin & Strauss, 2015; Glaser & Strauss, 1967). The grounded theory method with focus group interviews was recommended in previous studies as suitable for obtaining descriptions of experiences and the meaning of a phenomenon (Carey, 1995). This approach was considered appropriate here since FM, like most medical conditions, is influenced by the patients’ social environment (Carter & Henderson, 2005). Indeed, focus groups can provide information on people’s knowledge, views, attitudes, and explanations for behaviours resulting from various issues (Wong, 2008). Moreover, focus group members are reassured that they can communicate their viewpoints, ideas and experiences in an open discussion with the rest of the group (Kitzinger, 1994).

To establish the focus groups, the authors approached two major non-profit organizations in the field of FM in Israel. Both organizations’ directors agreed to the collaboration and one focus group was conducted in each organization. Moreover, it was agreed that using the Zoom platform would increase the accessibility for participation. Accordingly, an invitation to participate in a focus group was published on each of the organizations’ internet sites. The invitation included details on the aims of the focus group, the setting (i.e., the date and length of the meeting, that it would occur over Zoom, and that it would consist of an open discussion according to guiding questions), and the eligibility criteria (i.e., FM diagnosis and fluent Hebrew speaker).

Data collection

Two focus groups were held in January and February 2022 using the Zoom platform. A convenient sample of 15 participants were recruited; one group had 6 women and the other group had 9 women. The first 15 patients who responded positively to the invitation participated in the focus groups. None of the participants left the focus group discussions. Each participant received a link to fill out a short questionnaire of personal details. The focus groups were conducted by the two authors of the current study. Both have experience in qualitative research (i.e., the first author is a researcher and a social worker with expertise in mixed methods design studies, and the second author is a researcher and a registered nurse with expertise in qualitative research methods). The focus groups were conducted using a semi-structured interview guide (Table I) which referred to how the participants’ cope with FM. The interview guide was pilot tested by the two directors of the two major non-profit organizations in the field of FM in Israel. Each of them reviewed the interview guide and the final consent about the questions was made jointly with them. During the focus group sessions, the discussions were recorded and transcribed after receiving prior permission from the participants. Each focus group lasted between 90 and 120 minutes.

Table I. Interview guide.

Questions
1. What are your FM symptoms?
2. What aspects of your life has FM affected?
3. Please describe your thoughts about FM.
3. What emotions does FM evoke in you? (How do you feel about the fact that you are ill?)
4. How do you think the people in your environment (family, friends, co-workers) feel about you having FM?
5. How do you cope with FM in everyday life?
6. What or who helps you cope with FM?
7. What “tip” for coping would you give to a new patient who has been diagnosed with FM?

Ethical approval

The directors of both FM organizations expressed their consent for research collaboration in a letter they wrote to the University Ethics Committee. After the approval of the University Ethics Committee (approval number: 0004180–1), and prior to the meeting of the focus groups, the participants signed an informed consent form that included an explanation on the purpose of the study, a statement on confidentiality and adherence to anonymity of the participants when publishing, and that the meeting would be recorded.

Data analysis

A constant comparative analysis method was utilized. The constant comparative analysis method is a process of grounded theory and was used to conduct the interview analysis (Glaser & Strauss, 1967) by dividing the findings into repeated content. The constant comparative analysis method for a naturalistic inquiry was maintained by the emic perspective (participant’s view as an insider), and the conceptual frameworks maintained the etic perspective (outsider/distant concepts), as recommended by Fram (2013). As is common in qualitative research methods, the Comparative Method for Themes Saturation (CoMeTS) method was applied to achieve data saturation. The themes that emerged from the discussions in the two focus groups were compared and the sequence of the text was reordered (Constantinou et al., 2017). Each participant’s text was encoded using numbering.

Initially, the two authors read each focus group’s interview findings. Following this, the second author who is an expert on qualitative research methods, isolated the recurring findings, coded and classified them into similar contents, divided them into themes, and grouped the themes into main categories (Fram, 2013). Afterwards, a comprehensive discussion was conducted with the first author and a research assistant until they fully agreed about the final division into themes and categories and the content worlds identified.

Rigor

The focus group interviews were conducted according to established interview guidelines for scientists studying social issues (Arksey & Knight, 1999). The reliability and validity of the findings were ensured by peer debriefing (Lincoln & Guba, 1985). Both authors presented the findings at a staff meeting of senior faculty members (psychologists and social workers) at the University, during which thirteen faculty members expressed their views on the findings, themes and categories. Subsequently, the findings were presented separately to each of the organization directors. Discussions were held with them until agreement was reached regarding the division into themes and categories.

Results

Patient demographics

The demographic questionnaire was filled out by all 15 women. The age range was 47–72 years (M = 60.9 years, SD = 10.8). Regarding marital status, two were single, seven were married or in a relationship, and six were divorced. As to the number of children, seven had three children, five had two children, one had one child, and two had no children. In terms of employment, nine women were non-employed, four were self-employed, and two were employed up to 30 hours per month. The mean number of years since the participants had received a diagnosis of FM was about 9 years (range: 3–16 years). The most frequent pharmaceuticals used by the participants for treating their FM were non-steroidal anti-inflammatory drugs, gabapentin, tricyclic antidepressants, and cannabis. Participants also reported using non-pharmaceutical treatments, such as hydrotherapy, massage, and meditation/yoga.

Qualitative findings

The findings revealed the following themes and categories describing the participants’ strategies to cope with FM. The first theme was emotional coping, with two categories: (a) from repression and despair to acceptance and completion; and (b) a range of negative and positive emotions. The second theme was practical coping with three categories: (a) the agonizing process of receiving/internalizing the diagnosis; (b) living with the symptoms; and (c) changing lifestyle. The third theme was participants’ coping with their social environment with three categories: (a) sharing vs. concealing; (b) social connection—disconnection; and (c) environmental resources. (See Figure 1).

Figure 1. The research themes and categories.

In addition, we identified a theme on the causes for the appearance of FM that effect how participants are able to cope, with three categories: (a) demanding lifestyle; (b) traumatic life events; and (c) personality trait—perfectionism.

First theme: Emotional coping

This theme included descriptions of emotions that refer to acceptance and completion of the FM disease after initial feelings of repression and despair. Additionally, participants living with FM have a wide range of negative and positive emotions.

Category 1: From repression and despair to acceptance and completion

Emotional coping included self-acceptance and a sense of completion while convincing oneself that there are more serious illnesses and that one should learn to live with FM:

“I tell myself: Don’t get into despair. Don’t give up. Not everything is black. There are things much worse than fibromyalgia. I always put it in proportion; I often say: thank God I only have fibro” (14);

“You must put up with it, you’re not like you used to be. It is possible to live in peace with fibro” (2);

“I accepted myself. It took me quite a long process of accepting and loving the new me. I will never return to be what I was and that is it” (11).

Category 2: A range of negative and positive emotions

The negative emotions that were prevalent among the participants were anger, guilt, frustration, sadness, helplessness and a sense of missing out. The positive common emotions included hope, pride, happiness, optimism, and self-love. The following quotations illustrate the above:

“There are days of frustration and sadness. I cannot function as I have in the past. I am 59 and sometimes I feel like my body is cheating me but I am still optimistic. I always know there is worse. Today I am proud of myself and cherish thanks for what is” (2);

“I have feelings of guilt. Why I don’t: don’t go to work and don’t meet people but then I get up, make a pot of soup, and feel that I am effective” (4);

“Most of the time I try to be happy and not sad” (5); “I have a strong feeling of helplessness and missing out. I was active like five people and now I am a half human being. There is frustration, the head and brain work, but the body betrays” (8);

“I love the person I became; I am more giving to others but also I am totally willing to give up the fibro. I have an ambivalent relationship with this “gift” (15).

Second theme: Practical coping

The practical coping is related to the actions participants took during their struggle to receive an accurate diagnosis of their condition. They discussed the lengthy process until they were diagnosed with FM, which involved uncertainty and misdiagnosis, living with disturbing symptoms, and their changing lifestyle.

Category 1: The agonizing process of receiving/internalizing the diagnosis

Receiving the diagnosis of FM was accompanied by years of uncertainty, running between clinics, doctors, psychologists, psychiatrists, or other therapists, and receiving incorrect diagnoses, such as mental health problems:

“At first they said it is growing pains, after a few years they said it is probably arthritis, and after a few more years a doctor told me I had something much worse than arthritis, I have fibromyalgia. According to his diagnosis, I should be using a walking stick in five years, and be in a wheelchair in ten years” (7);

“I was bullied with psychiatric pills because they thought I was lazy inventing pain until after 8 years had passed the neurologist told me: ‘You have fibromyalgia’” (13);

“I was not diagnosed for 16 years. One day I saw an article in the newspaper about fibro and started marking it: This is me! I cut out the article and showed it to my physician telling her ‘Maybe this weird thing is what I have’. She frowned, threw it in the trash and told me not to put nonsense in my head. That’s how I lost 16 years where I was considered depressed and lazy” (10);

“I have been formally diagnosed for fifteen years, but fibro had been with me for another ten years in which I was not diagnosed. The medical system has a lack of awareness, lack of familiarity and unwillingness to recognize the disease. A medical director once told me, ‘Oh fibro, it’s all these crazy people who run from doctor to doctor and find nothing because they have nothing’” (8).

Category 2: Living with symptoms

The participants described various symptoms such as fatigue, exhaustion, pain, lack of concentration, stiffness, weakness, and lack of energy.

“Pain, pain, pain. Lack of sleep, fatigue, exhaustion, like a rag” (13);

“The pains are very strong. Tight muscles are locked. It’s an inability to lift yourself up and get up and function” (11);

“It is like a fuel tank I don’t have. I always have something that looks like half or a quarter tank. I have to lead my life with a very small battery” (8).

Category 3: Changing lifestyle

The participants emphasized the variety of lifestyle activities that they have adapted due to having FM, including Feldenkrais (a type of exercise therapy), aerobic exercise, choir singing, hydrotherapy, mindfulness, massage, meditation/yoga, and acupuncture. Moreover, conventional and alternative medicines were mentioned regarding the change taking place in their lifestyle, including the use of cannabis.

“I don’t let myself fade, I do Feldenkrais, mindfulness and I sing in the choir I have developed for myself another world. I attend courses on self-awareness and breathing practices” (2);

“I decided to dedicate time to myself and improve my life. Hydrotherapy, exercise, and yoga help me” (9); “I do not automatically trust doctors, so I took more responsibility for myself. I am a very attentive person. It’s part of mindfulness” (10);

“Since I started taking the medicine Cymbalta, I don’t care about the pain” (12); “Cannabis makes my day look different and puts the pain elsewhere” (4).

Third theme: Participants’ coping with their social environment

Category 1: Sharing vs. concealing

The participants described with whom they choose to share their struggles with FM symptoms and their daily difficulties. Sharing after prolonged concealment was mentioned several times as “coming out of the closet”. However, there were also feelings of being a burden, disappointing the people surrounding them, and a lack of understanding of their disease, which leads some to hide their disease from their social environment.

“Until about three years ago I did not share but it caused disconnections. When I started sharing, I said: ‘I am coming out of the closet’ and people were afraid of it because they don’t have familiarity with fibro” (8);

“No one understood me, not even my family. Today I inform only those around that understand me, but those who do not need to know, do not need to know” (3);

“It took me two years to come out of the closet. At first, I said to everyone that I have back problems because I didn’t want to the title of fibro. People have contempt for the disease and there is a stigma that the patients are psychiatric” (13).

Category 2: Social connection—disconnection

The participants described disconnecting social relationships with people who did not understand or who underestimated their disease. Instead, they developed social relationships with those who they felt they could trust and who would help when needed.

“I feel best with friends who have fibro; they are like sisters. But many times when I plan weekends with the family, I am afraid to book a place because I don’t know how I will feel” (1);

“An educated friend who has a PhD in physics asked me if fibro is a contagious disease. I said no and since then he has disappeared” (8);

“I disconnected from everyone who became toxic and hostile. Since people did not understand what happened to me, whoever was unwilling to accept it I just severed ties with” (6).

Category 3: Environmental resources

Environmental resources were described as the ability to receive emotional and physical support from family members, friends, co-workers, and non-profit fibromyalgia organizations.

“I have situations where I need to call one of my sons who lives not far from me because I need help at home” (9);

“My team knows that I have fibro and I don’t carry heavy things, so they carry for me (11);” …… my husband, children, and five grandchildren is my blessing” (12);

“Things that are very important and helpful to me include the emotional support I receive from my family (15);

“I have known many members of the fibro community that help me … . they makes me feel good and happy” (2).

Fourth theme: Participants’ perceptions of the causes of their FM’s appearance

In addition to the above themes, we identified a theme that came up in the participants’ discussions regarding their coping with FM, even though no question was directed at this topic from the structured interview guide. This theme presents patients’ perceptions of the causes for their FM’s appearance that in turn effect their coping with FM.

Category 1: Demanding lifestyle

The participants described workload, stress, “around the clock” multiple work jobs, or unsupportive relationships as factors that contributed to the onset of their disease, as the following quotations illustrate:

“I was under great pressure at my workplace. The job was very demanding and very abrasive. I lived in a very demanding system and even at home I lived in an unsupportive relationship” (1);

“I was a completely different person. I worked around the clock and raised three girls alone” (4).

Category 2: Traumatic life events

Traumatic life events such as road accidents, divorce, abuse at work, life-threatening diseases, or a relative’s death were mentioned as causes for the appearance of FM.

“I went through two traumas. I think it has to do with the appearance of Fibro: the sudden death of my father. We had a special bond. He also was the mainstay of the whole house and I took it very hard. Then I went through a crisis in the professional field as well, my boss slandered me and I had no backing from her, it broke me” (2);

“It happened to me after a combination of several events at once: My mother underwent a very complicated surgery. My sister was dying of cancer. During this celebration, my husband informed me on the phone that he was not coming home” (10);

I got fibromyalgia following a car accident. I was on my way back from work and a truck collided with me (15).

Category 3: Personality trait—perfectionism

The participants stressed that perfectionism as a personality trait might have caused the onset of FM, as the following quotations show:

“It is related to personality pattern; I have no doubt about that. It’s a kind of perfectionism. Always to give and give until I just completely trampled myself” (1);

“I am a perfectionist. I have an over desire to be perfect” (3).

Discussion

This study focuses on Israeli women’s coping with FM. Clauw and colleagues (2018) stated that “despite the heritage of FM, its management and treatment is at a similar stage to where some other chronic illnesses were 20–30 years ago” (p.13). Its recognition as a category of physical illness has been challenging, and thereby persons with FM might not receive a prompt diagnosis or adequate care (Gendelman et al., 2018; Yaghmaian & Miller Smedema, 2019). Through a qualitative method of focus group discussions, we identified common themes relating to emotional, practical, and social environment coping. Previous studies that relate to coping with FM have focused mainly on problem-focused coping strategies, (e.g., increasing activity, seeking social support) and emotion-focused coping (e.g., positive reinterpretation), which were found to be associated with greater psychological and physical wellbeing and increased FM patients’ quality of life (Braun et al., 2020; Mazo & Estrada, 2020; Soriano-Maldonado et al., 2015). Our findings mainly highlight coping as a dynamic process that engages cognitive and behavioural efforts to manage the internal and external demands evoked by FM. Notably, this process included emotional, practical, and social environment coping strategies and was driven with reference to the participants’ perceptions of the causes of the onset of their FM (as emerged in the last theme).

Specifically, the first theme of emotional coping contained two categories: from repression and despair to acceptance and completion, and a range of negative and positive emotions. These findings were supported in a cross-sectional study that included women with FM (N = 403) compared with controls (N = 196) from the Netherlands (van Middendorp et al., 2008). The study found that compared with controls, women with FM increased the use of emotional strategies (e.g., emotional suppression, distancing, denial), and reported higher negative emotions and lower positive emotions than the control group. However, our study revealed that the negative emotions (i.e., anger, guilt, frustration, sadness, helplessness and missing out) were accompanied by positive emotions (i.e., hope, pride, happiness, optimism, and self-love), and were mingled throughout the participants’ coping with their FM diagnosis and its implication on their life. Indeed, negative and positive emotions are representative of the nature of everyday life although invariably short-lived and fluctuating (Gilman et al., 2000). This study’s findings support the understanding that during times of distress, the link between negative and positive emotions may increase, and the existence of one may result in the reduction of the other (Fredrickson, 2009). Referring to FM disease, it seems that negative emotions might be related to patients suffering from chronic pain (Davis et al., 2004), although pain has been shown to influence negative emotions only in people who are high on emotional intensity and low on emotion regulation (Hamilton et al., 2007). Similarly, Yaghmaian and Miller Smedema (2019) found that women who experience higher levels of positive emotions, lower levels of negative emotions, and better satisfaction with life were those with lower levels of disease severity and who evaluated their functioning role in life more positively. Furthermore, in qualitative studies on FM, patients mainly expressed negative feelings of embarrassment, frustration, guilt, isolation, and shame that were associated with a lack of social acceptance of FM or when their abilities no longer enabled them to perform simple tasks (Arnold et al., 2008; Wuytack & Miller, 2011). Therefore, it seems that our findings reinforce that psychological coping is a dynamic process that might associate with the patients’ symptoms, functioning abilities, and the degree of social acceptance.

We suggest understanding the emotional coping theme observed in the current study in the same way as stages of grief. As has been established, the grief process progresses through specific emotional stages: denial, anger, bargaining, depression, and, finally, acceptance (Parkes, 2013). Yet, as is equally known, “these phases are not clear cut, and any individual may oscillate for a time back and forth between any two of them” (Bowlby, 1980, p. 85). Given this, the FM participants’ emotional coping echoes a similar experience than that of bereaved persons as reflected through the two categories: i) from repression and despair to acceptance and completion, and ii) a range of negative and positive emotions.

The second theme of practical coping included three categories that reflect the actions that participants took in response to the agonizing medical journey they undertook until that receiving their FM diagnosis, their ability to live with symptoms, and the resulting change of lifestyle. With regard to the establishment of their FM diagnosis, participants commonly described a failure of the medical profession to recognize the illness which resulted in doubts not only about the diagnosis but also of the women’s credibility. Moreover, the establishment of a diagnosis was often painful and intrusive for participants both physically and emotionally. These findings support other qualitative findings in the field of FM (e.g., Raymond & Brown, 2000; Sim & Madden, 2008). Due to the agonizing way to receive the diagnosis the women with FM described that they needed to employ coping strategies that were geared towards problem solving to manage their symptoms and changing lifestyle, as well as a need to do for themselves. Pain was a central common physical symptom that negatively impacted them as well as others and they viewed as threatening their lives and well-being. Previous qualitative studies (López Espino & Mingote Adán, 2008; Mazo & Estrada, 2020) argued that the disease’s symptoms, especially pain, encourage alarmist thoughts, victimhood, as well as avoidance behaviours. Yet, understanding the illness and adopting accommodating behaviours allow patients to create adaptive coping strategies (Raymond & Brown, 2000). 2019) demonstrated that people who suffer from medically unexplained symptoms (such as FM) and report a greater understanding of their illness and perceive their symptoms as controllable were found to be more likely to develop effective management strategies. Moreover, the development of effective management strategies was correlated with less disability. Conversely, people that perceived their illness as a threat were more dependent on external support and presented decreased active coping responses. Indeed, in relation to FM, Alok and colleagues (2014) found that pain, function, and symptoms, were significantly and negatively associated with problem-focused coping. They also found that patients with FM were using problem-focused, emotion-focused, and avoidance-focused coping skills to improve their quality of life.

Regarding the changing lifestyle category, the complex symptoms associated with FM require changes to patients’ lifestyles. Indeed, the participants noted that they adapted multiple modalities to their lifestyle (i.e., Feldenkrais, aerobic activities, mindfulness, massage, heat, meditation/yoga, and acupuncture) accompanied with conventional and alternative medicine services, including cannabis use. Previous studies (Bair & Krebs, 2020; Friedberg et al., 2012) have supported the need for a combination of treatments as there is no one intervention that is able to manage symptoms, improve functioning, and increase quality of life. Notably, the focus groups discussion stressed the participants’ personal responsibility to tailor for themselves an adaptive lifestyle so that they can self-manage their FM. This finding supports the argument that “FM’s patients feel relieved when they finally receive their diagnosis, however, this relief tends to evaporate when they realize the ineffectiveness of treatments and the illness prognosis” (Galvez-Sánchez et al., 2019, p. 122). As such, the participants make their own goals for their lifestyle and act to achieve them.

The third theme dealt with the participants’ coping with their social environment and it included three categories: sharing/concealing, social connection—disconnection, and environmental resources. Similar findings have emerged in previous studies (e.g., Armentor, 2017; Arnold et al., 2008; Juuso et al., 2011; Wuytack & Miller, 2011). The participants discussed that they hide their symptoms from their social environment and stay in the closet in order to avoid rejection or judgement. Furthermore, they utilized strategies like keeping a distance from others, concealing their symptoms, withholding information, and withdrawing from social interactions. These coping strategies reflect their difficulties to maintain pre-illness social relationships and roles due to FM. A possible explanation might relate to stigmatized experiences associated with the illness that subsequently modify patients’ social relationships with their partners, friends and family members, and creates difficulties for those affected in terms of perceived social support, social roles and responsibilities (Armentor, 2017; Wuytack & Miller, 2011). In addition, there was a strong pattern among the participants about the inability of others to understand their illness experience. Madden and Sim (2006) argued that because FM does not seem to be a meaningful label for the informants or for significant others, it fails to produce a common language that can be used within social situations to explain the disease. The lack of social understanding and social acceptance of FM thus contributes to social withdrawal and isolation, which often gives rise to feelings of sadness and loneliness (Arnold et al., 2008; Wuytack & Miller, 2011). Armentor (2017) argued that FM patients choose not to communicate on their illness due to the difficulty of describing an invisible illness, misunderstandings, and the desire to avoid unwanted reactions.

The aforementioned was echoed throughout the focus group discussions in this study; the participants talked about an avoidance coping strategy that was associated with their desire not to explain their condition, their fear of being judged, and their lack of social support. However, they did state a feeling of relief when they finally shared their diagnosis as it enhances their sense of empowerment and enables them to receive support from their social surroundings.

Finally, the last theme that emerged while participants discussed their coping with FM captured their perceptions on the causes of their FM’s appearance and contained three categories: a demanding lifestyle, traumatic life events, and a perfectionism personality trait. Indeed, childhood adversities, traumatic events (such as war, terrorism, accidents, and natural disasters), workplace-related stress (such as bullying), and certain personality traits (such as perfectionism, neuroticism, avoidant personality) have been previously tied to the development of FM (Barski et al., 2020; Galvez-Sánchez et al., 2019; Hellou et al., 2017). These possible causes are important to note since FM is a “medically unexplained” disease; the aetiology is unknown and cannot be confirmed through medical technology or traditional diagnostic procedures (Boulton, 2019). Essentially, it seems that by attributing causes for their FM’s appearance, participants were able to create meaning for the behavioural and cognitive efforts they applied to manage their medical condition emotionally, practically, and socially. Mengshoe and colleagues (2018) stressed that when a patient’s illness cannot be explained by pathology, then the patient may be expected to take responsibility for managing the problems by him- or herself and to adopt personal strategies to reshape the meaning of diagnoses. Folkman and Moskowitz (2000) referred to this coping style as accommodative coping, which involves cognitive restructuring. They suggest two forms of meaning-making (such as from a diagnosis). Firstly, a situational meaning which refers to appraisals of stress based on a person’s beliefs, goals, or values that help the individual to determine his/her meaning of the situation, and secondly, a global meaning which is more concerned with the abstract, generalized meaning that is related to an individual’s existential assumptions. Accordingly, the participants in the current study may have applied the situational meaning coping style by referring to the causes of their FM’s appearance, and thereby they were able to broaden their actions, build enduring personal resources, and counteract their negative emotions evoked by FM.

Limitations

Several limitations should be considered. First, although the study was open to women and men, only women enrolled in the study. Future studies should include men in order to assess any variance in coping or any differences in the way that FM impacts the lives of men. Second, patients were recruited through two major non-profit organizations in the field of FM, and therefore may not be representative of all patients with FM. Third, in the inclusion/exclusion criteria, we did not refer to comorbid health conditions. Multiple comorbid health conditions may contribute to patients’ distress (Clauw, 2015) and thereby to their coping and intervention approaches. Accordingly, future studies should consider the representation of comorbidities within inclusion and exclusion criteria to increase the generalizability and real-world applicability of FM research. Fourth, the number of groups was small which allowed for an intensive discussion, thus, generalizability was not the goal of this study. Confirmatory information with more groups and population of patients is needed. Future research could focus on mixed methods that would allow exploration of coping as it relates to variables such as the length of time to diagnosis, the intensity of the main symptoms, the interference of pain in daily activities, and the presence of emotional disturbances.

Conclusion

This study aimed to elicit via focus group discussions a comprehensive understating about coping with FM disease among Israeli women. Overall, the participants reported that the process to reaching their FM diagnosis was frequently long and stressful. Several were initially misdiagnosed while others had to take charge of their own diagnosis and education. Most patients felt some relief after having a diagnosis, yet the lack of public awareness of FM made it difficult to receive adequate support. Emotional, practical and social environmental coping skills are evoked by the FM disease, and include cognitive and behavioural efforts to manage the internal and external demands of the FM disease. Our study gives attention to the participants’ perceptions on causes that evoke FM’s appearance, a domain which has received insufficient attention with regard to patients’ coping. Additionally, our study highlights that coping should be viewed in relation to the diagnostic process, the severity of symptoms, and the participants’ social environment (i.e., family, significant others, friends, and work colleagues). Raymond and Brown (2000) suggested a continuum between diagnosis and coping that begins with understanding the disease and adopting accommodating behaviour, to accepting the disease and thus allowing the creation of adaptive coping strategies. With respect to the results of this study, group psychotherapy sessions might be a useful platform for FM patients whereby patients can get peer support, a sense of shared experience, and an opportunity to learn from and help others (Anderson & Winkler, 2007). Yet, it should be noted that in a recent systematic review (Şen et al., 2019), the authors implied that the content of the interventions should be designed to cover the biopsychosocial nature of FM through multidisciplinary platforms and not only by the unidimensional platform of group psychotherapy sessions.

The present study also highlights the need to raise awareness among health care professionals about patients’ experience with FM. The individual personal nature of FM stresses the need for health care professionals to listen to patients and take into account all aspects of their subjective illness experience as it relates to physical, psychological, and socio-environmental factors. Moreover, it may be beneficial to get a comprehensive assessment of the impact of FM on the multidimensional aspects of patients’ daily functioning (i.e., physically, psychologically, and socially), as part of their treatment. Finally, it would be desirable for rheumatology units to have an interdisciplinary professional team (i.e., physicians, nurses, and psychologists/social workers) who work together with patients. This would assist patients in managing their medical condition, in supporting their meaning construction for having FM, and enhancing their effective daily coping with FM demands.

Informed consent

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee. The study was approved by the University Ethics Committee (approval number: 0004180–1). All participants provided their informed consent before participating in this study.

Availability of data and materials

Data used for this study are available from the corresponding author on reasonable request.

Authors’ contribution

Both authors contributed equally to the study design, data analysis and manuscript preparation.

Acknowledgments

The authors thank the women that willingly participated in this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2023.2204622.

Additional information

Funding

This research received no specific grant from any funding agency.

Notes on contributors

Liat Hamama

Liat Hamama. School of Social Work, Tel Aviv University, Israel. Research interests: Stressful/traumatic situations/illness, personal and environmental resources, coping and subjective well-being.

Michal Itzhaki

Michal Itzhaki. Nursing Department, School of Health Professions, Sackler Faculty of Medicine, Tel Aviv University, Israel. Research interests: Emotional management, resilience of patients and caregivers, caring science and mixed methods study designs.