Sub-theme: Constant challenges.

We began the focus groups, asking the participants to reflect on their history with FM so far. Overwhelmingly, participants described their past as a series of ongoing challenges in the fight for a better quality of life. This would begin early in the diagnostic journey with the symptoms being initially attributed to a variety of conditions other than FM:

- “was always put down to, oh growth pain, oh you will grow out of it, nothing about it” (Focus Group 1, FG1)

- “kept being told it was chronic back pain, arthritis, this that and the other” (FG2).

FM symptoms would commonly be attributed to personal shortcomings rather than a medical condition. One person remembered: “when you’re a teenager, [you] just get told you’re lazy” and later in life when attempting to work “you don’t want to go to work, and you haven’t got no work ethics, and it’s like no, I just physically can’t do it, my body is screaming in pain” (FG3). Some had to give up working due to FM (“had to give up work completely in July 2019 because my fibromyalgia was really affecting, physically affecting, how I was working”, FG3). Those with families felt they couldn’t carry out their parental responsibilities, which made them “feel guilty”:

- “because my sons have had to do an awful lot more than most children. You know, trying to get mummy out of bed so she can take them to school when they are seven years old is not nice for any child” (FG1).

Others gave up on leisurely activities that brought them meaning, e.g., one person said they “used to be quite sporty. And now, I can walk a little bit, I can do a little bit of cycling. It’s not satisfying, frankly” (FG4). Failing to fully engage with life responsibilities and pleasures was linked to loss of identity: “for me, it was a loss of independence, and a loss of me as a person that I was” (FG2).

Added to the challenge was that FM was seen as ever-changing. For some, it was “like a rollercoaster” (FG3) with good and bad days, which inspired the feeling they were “still on a quest to get better” (FG1). Living with FM felt like “such a difficult journey to understand our bodies and what works for us and what doesn’t work for us” (FG2). And that would not “happen overnight, it is small steps.” (FG4) For others, the dynamic brought up by FM only added to the burden: “it is just the unpredictability of fibro which is difficult” (FG3). For many their well-being has been on a steady decline despite their efforts (“slowly getting worse again”, FG1). This uncertainty in FM progression left individuals apprehensive about their future:

- “Worried about what the outcome is going to be in like 5, 6, 7 years. I’ve got a 16-year-old daughter at home, and I’m worried about if I am going to be able to play with my grandchildren.” (FG2)

Sub-theme: Severe emotional toll.

As participants recounted significant life developments, it became evident the profound impact FM has had on them emotionally. Living with FM was described as something that “emotionally destroys you” (FG1) and “a very depressing, soul-destroying feeling” (FG1). As participants took turns to share their stories, one said that the name alone was upsetting enough: “the word fibromyalgia brings the tears, and then you get angry” (FG1). Adding to this was the sense of vulnerability that FM creates “because you’re at the mercy of everybody because you want to be helped, you want to understand” (FG2). Despite wanting to get better, some felt helpless:

- “I see no point contacting anybody anymore. My husband says you should be in hospital right now, what’s the point, what are they going to do? There’s nothing anybody can do, so why fight it?” (FG1).

Participants gave several examples of how FM had a widespread impact on their life and forced recurring major life adaptations from them:

- “I had to give up work completely in July 2019 because umm my fibromyalgia was really affecting, physically affecting, how I was working.” (FG3)

- “I have to take voluntary redundancy because of fibromyalgia because I end up getting chronic migraines with it” (FG1)

- “I feel guilty because my sons have had to do an awful lot more than most children, umm, you know, trying to get mummy out of bed so she can take them to school when they are seven years old is not nice for any child.” (FG1)

Sub-theme: Fragmented care.

Perspectives on how FM shaped experiences with healthcare was a focal discussion topic. As a whole, participants described the healthcare system as lacking a cohesive holistic approach when it comes to treating FM. As patients, participants felt that healthcare professionals often failed to consider all of their symptoms:

- “most of the time they don’t look at you holistically” (FG2)

- “they just look at one thing, and it’s an absolute nightmare that they can’t look at you as a whole person” (FG2).

When particular symptoms were discussed with a clinician, individuals felt little support was offered to them (“they couldn’t pinpoint anything so they just said “You’re just going to have to live with it, deal with it”, FG1). It seemed for many that FM became the go-to explanation for any health complaint:

- “Every time you have something wrong with you, and you go to the doctors, they just go fibro. Fibro. And it is like, I could be dying, but you’re not actually checking!” (FG4).

Met with such attitudes, individuals with FM felt abandoned by the healthcare system (“a very lonely thing“, FG1).

In contrast, some faced distrust from their healthcare providers. One person shared that they experienced that already in their adolescence, doctors would dismiss their health concerns:

- “When I was in my teens, I went to a GP and said what’s wrong. She said, “Oh, there is nothing wrong with you, just get a life. There is nothing wrong with you get on with it. But I know something, it is not normal to feel so sleepy all of the time.” (FG4)

Participants reported that their lived knowledge about FM was often dismissed, feeling that “[doctors] don’t like it when you’re a bit more of an expert patient than they are. I have an awful lot of problems with that.” (FG1) Unsurprisingly, a distrust towards healthcare professionals themselves was recurrently mentioned. Participants felt there were only“a few great doctors that completely understand what you’re going through” (FG2). For most participants, their experience with healthcare professionals left them largely disappointed. This ranged from doctors being “a bit dismissive, not in a rude way”(FG3) to doctors that have made participants “feel less human” (FG2), some being told that “fibromyalgia is a make-belief illness and that it’s not real” (FG4). The reason for the poor attitudes from doctors was unclear, but some individuals believed it could be because “they didn’t have the time or didn’t have the knowledge” (FG3). Due to this, adhering to proposed treatment plans was challenging: “[doctors] will often make a decision and expect you to do something, and I don’t know if what they’re asking is going to make me worse?” (FG2) Still, participants acknowledged there were specialists that were able to offer support for FM (“fantastic doctors [...] will do anything that they can for you. And they’re the ones that make you feel like it’s real”, FG2). As patients, these were the type of doctors needed for FM management:

- “They do their best to help you. They don’t cluster everything as fibromyalgia. You go to them with symptoms, and they don’t automatically say, oh it’s your fibro. They will investigate it” (FG2).

Notably, individuals with FM appreciated that they had different and positive experiences with healthcare professionals in the BRC program, for example mentioning that it “makes all the difference” because “suddenly you were hearing someone who understood what he was talking about” (FG2). This is explored further in theme 5.

Sub-theme: Medication aversion.

When it came to managing FM through medication, many participants expressed scepticism and distrust. While many had a long history with a variety of medications, participants felt uncomfortable taking them now and actively avoided them: “I’ve been there a couple of times but due to my experience I’d rather cry myself to sleep than ever take medication again” (FG1) and “I try and do everything I possibly can to avoid taking the strong medication because it does frighten me” (FG2). This was closely linked to the worry of becoming dependent or even addicted (“absolutely terrified of becoming an addict”, FG4). Those who had more experience with medication felt it changed them as a person (“Because of medication, I’m not me anymore”, FG1). The experience with a variety of prescribed drugs had such a negative impact that some participants outright refused taking any: “you can not tell me, or force me, or no matter what you do, how much you explain it to me, I will not take it. I refuse to take it. Because I know what it leads to” (FG1). In one case, this rejection extended beyond the person themselves and to their family as well:

- “I’m actually just trying to teach my son at the moment because he has just done his knee in, umm, and he wanted me to get him sleeping tablets and I refused. Umm, I said no I’m sorry darling but whether it’s a torn ligament or whatever you’ve just got to keep persevering with it.” (FG1)

Participants linked this aversion to the extensive list of side effects they had experienced. For example, one individual remembers how a prescribed drug “knocked me out and in the morning I could not wake up, I spent the entire day just drifting in and out of sleep.” (FG1) Another also described how another prescription would “put me in an altered state. They help the pain, but they just put me in an altered state, so that’s not a solution” (FG4). For many, “the side effects way outweigh the benefits” (FG1). Some participants described feeling unable to discontinue medication:

- “you have horrific side effects when you stop taking them. Like the withdrawals from them, they are not nice at all” (FG2)

- “I now rely on that medication so much that to stop it would actually be worse on my mental health. It would be worse on my physical health. So I’m now stuck in this” (FG1).

Participants expressed that to them; the limited benefits coupled with the experienced or potential side effects left them wondering what else is available for FM symptom relief (“I’m worried I’m going to get to the stage where there’s nothing left for me to take”, FG2; “frightened of being without”, FG3).

Sub-theme: Hidden struggles.

As most of FM management is self-management outside the healthcare context, participants’ experiences with FM in society as a whole were also considered. A central discussion point was the invisibility of the condition and the hardships that arise from it:

- “when you haven’t got something that people can physically see, they don’t understand it”

- “they think you’re putting it on” (FG1).

Failure from those around to appreciate the challenges that FM creates, had led to many feeling lonely and misunderstood:

- “It’s difficult to explain. It is not just fatigue, it is really bad fatigue” (FG3)

- “You feel you have to keep going because no one is asking you if you’re okay” (FG2).

When discussing, how could an individual with FM explain their condition to those around them, an objection was voiced to doing so:

- “[Don’t want to let] them know how bad I am because I don’t want them to worry” (FG2),

- “I don’t want to come across as if I’m whinging, hypochondriac” (FG2).

The worry of losing the social circle was a prominent reason for keeping to oneself: “really I just want to go, I’m feeling so shit! But you can’t do that to people, otherwise they will run a mile” (FG3). Similarly, the fear of feeling disappointed by their social circle’s response was also discouraging (“because it can be quite upsetting when you don’t get the response you need” (FG2).

Sub-theme: Finding understanding.

When describing their social life, participants had a variety of experiences. Some felt they lost their social connections due to FM (“I have no friends, nothing because it is like fibro walked in and everybody has just walked away”, FG4). Still, those who had retained the connections, would also feel lost:

- “They can’t understand they’re like if you could do it yesterday why can’t you do it today? And it’s trying to get them to understand how you can be completely different in a few hours or in 12 hours’ time you can be a completely different person” (FG3).

The doubts of the social circle would sometimes be reflected in the person with FM. One participant confided, they thought to themselves “you sound like you’re making this up, this doesn’t sound like it can be real for anybody” (FG2). Such self-doubts could last “for a very long time [when] you believe what other people are saying or hinting that, that it is your imagination, or you’re lazy or something that is your fault. You know, you are not eating properly [...], or you’re not drinking enough or whatever.” (FG3) In contrast, other participants shared that they had a strong support network despite their FM. Their family and friends managed to develop an understanding of FM: “I’ve asked them to Google, to research it a little bit, because it was easier than me trying to explain, and they’re very good, they know if I can’t make something, they’re fine. They understand.” (FG2) Thanks to the shared understanding, these individuals felt empowered to be honest with their social circle, for example:

- “I am able to say to them ‘Oh, I am having a foggy day, can’t speak at the moment. Foggy day, I will give you a ring in a couple of days’, something like that” (FG3).

Sub-theme: Strength in purpose.

A major theme was also the participant’s own relationship with FM. In the process of describing their feelings towards the diagnosis and all that it brings with it, the need for a bigger meaning was often brought up. One person described it like that: “I’m a big believer that God made me with big shoulders and big hips for a reason, as my grandma would say” (FG1). Many agreed on the possibility that they may have developed FM due to a long history of sacrificing their own needs over others’ (“... looking after everyone else. Now my body is giving up on me. And that’s why I’ve got fibromyalgia, or I’ve always had it probably, but I have always had to put it to the back”, FG1). One person even felt they could recall the point it happened (“to the point I kept pushing myself and pushing myself, to having a breakdown”, FG4).

Despite some participants mentioning they believed that FM developed as a result of self-exertion, many continued to push themselves. One person described:

- “When I’m having a really good day, I try and do as much as I can in that day. Of course, then I suffer from it a few days afterwards because I have done too much”, but in turn “when I am having a good day, I want to cram everything in because I am afraid, I am going to miss out for the next 4 days” (FG3).

Sub-theme: Coping strategies.

In order to persevere, participants described they had developed their own coping strategies. (“learned to deal with my condition in my own way”, FG1). Some found it was crucial to accept the limitations brought up by FM:

“living in the now actually helps. I’m hoping that, if things don’t get better, at least they won’t get worse. I know that it’s a full-time job really, looking after yourself, with this condition” (FG2).

This could include listening to their own body “If I am having a bad day, to say I am having a bad day and that is it” (FG3). Others described slowing down and learning to rely on others where possible. Pacing was seen as challenging but necessary, e.g., “when it gets really bad [I] try to think: you know I’ve been here before, resting does work. And it does mean that things will change” (FG2). Opposite to that, others found that increasing exercise was beneficial to“building up gradually my movement, my exercise and I think that helps” (FG2). Beside movement, gaining knowledge about FM was seen as important in managing it. For example, “understanding its scientific base for me … it just removed all of the guilt and self-blame” (FG3). Even though learning about FM does not relieve it, it was still valuable to participants (“the pain doesn’t necessarily lessen, I just understand it more and can cope with it better”, FG3).

Sub-theme: Course content.

Lastly, participants recalled their experiences with the BRC and how that has influenced their perspective on FM. Participants enjoyed the content, describing it as “very-very helpful” (FG1) and informative (“to me, information is so key”, FG1), and allowing them to develop “a newer understanding of the condition” (FG1). The change in mindset was described as particularly beneficial: “the whole concept of the course really was to make us understand in our minds there was a different way of thinking about what was happening with us” (FG1). As the course was delivered by a healthcare specialist, having them throughout the course was viewed particularly positively: “just to know that we have someone like him on our side, that’s a big bonus” (FG1).

The metaphors offered in the course were adopted by some to help them bridge the communication gap between them and their social circle. Talking about the software-hardware metaphor, one person described how it could help: “if I was explaining it to anybody else, my granddaughter for example, that is the analogy I would use. Because it is very descriptive, it is a very good way of explaining what is going on in the body.” (FG3). The mental exercises were favoured by some for their simplicity, e.g., “listening and closing my eyes for five minutes and blocking the kids out, yeah that works” (FG1). Importantly, not all techniques worked universally for everyone. For example, picturing oneself as a leaf or twig floating down a water stream “was given to us as a tool to help us to relax our bodies and our minds together. […] I do it every night before I go to sleep, and I found it a method of being able to go to sleep much better and much quicker” (FG1). For others, it did not work, one person saying “trying to pretend I’m a twig and going down a river really doesn’t work for me” (FG1).

Further to this, participants saw opportunities, in which the course could be improved. For example, the way in which medication was approached: “the way we were looking at the drugs felt really overwhelming to me. When you have people calling out answers, and they are all put up on the board” (FG2). Introducing other components to the course was also suggested. This included carrying out counselling in parallel with the course (“linking counselling sessions along with the course, I think would probably benefit a lot of people”, FG1). In terms of organisation, participants had the input that supplementary materials would be beneficial (“there were no handouts and there was no there were no supporting information”, FG2). Participants particularly enjoyed the social aspect of the BRC and would have preferred to have more time dedicated to it:

- “During the break I needed to rest, I needed to not talk to anyone, but sometimes it was the only time you got to talk to the other people. It always felt as if I can learn a lot from these people because they are experiencing what I am” (FG2).

It was also proposed that the BRC was partially carried out in a personalised, individual manner. Building on that, it would have been beneficial for individual feedback “come up with an action plan to help them utilise the [BRC] tools” (FG1). Participants also felt people with FM should be included in the future iterations of the course, e.g., “at the stage of when you’re planning, when you’re about to write it all, adapt it, having that voice of the person with the condition in that room with you in some form is invaluable” (FG2).

Sub-theme: Creating connections.

Beyond the content of BRC, one salient opinion was regarding the social aspect of the group-based sessions. Because participants were grouped with other FM-diagnosed peers, they felt it “helped me join a group of people that I can now vent to when I’m upset and angry that will fully understand” (FG1). This was even stated as the most important part for some participants who believed that they “already knew everything, but what really changed for me, the BRC specifically, was seeing other people. Like [Participant] said, you’re not alone” (FG1). For some participants, “the main thing that helped me and with the mentality is to learn from other people s experience.” (FG1) This created a sense of community that persisted beyond the course: “we had a WhatsApp group that went on for quite a while” (FG2). Some group members even formed long-lasting friendships (“we have knitted quite a close friendship with the rest of the guys, you know, and that is very helpful for us”, FG4). However, at times, the group setting was also tiring. For instance, when “people were talking about what they were on, and it was just, I found it really overwhelming” (FG2).