Six semi-structured interviews were conducted, exclusively with women. Participants all had an FM diagnosis and were participants in a peer SSN for people with FM. Mean (SD) age was 57 (15.5) years (range 42-73 years). One woman was retired, two were not working, and three were working. Five women were married or living with a partner, and one was divorced. All six had children, living with their mother
in three cases. No major family burdens were reported, except that one woman cared for her grandchildren.
The analysis highlighted three themes related to the role played by the peer SSN for people with FM: empowerment, effects on wellbeing and QoL, and valuable aspects of the SSN. Table 2 describes the topics and categories that emerged after analysis of the interviews.
Table 2. Topics and categories identified in the thematic analysis (SSN, social support network).
Effects on wellbeing
and quality of life
of the SSN
-The SSN facilitates acceptance of the FM diagnosis
-The SSN attenuates FM stigma
-The SSN transmits a feeling of being understood
-The SSN is a source of information for better FM management
-The SSN improves physical wellbeing by helping with symptom control
-The SSN transmits a feeling of being listened to
-The SSN provides emotional support and bolsters self- esteem
-The SSN increases personal feelings of satisfaction
-The SSN is a socialization medium
The SSN facilitates acceptance of the FM diagnosis
Participants explained that the SSN helped them better understand their disease and that this was a key factor in accepting it. All the women had consulted numerous health professionals, and it had taken approximately six years to obtain a clear diagnosis.
“I went to several doctors, social security and others [private], to see what was going on and what I was going through. Because I didn't know.” [P1_56 years old]
Symptoms were often attributed, prior to diagnosis, to psychological distress.
“I must have had fibromyalgia for a long time. They thought it was nerves.” [P2_56 years old]
Sharing what was happening to them and what they felt meant that the women better understood the characteristics of FM, which made them feel less guilty on understanding that the FM was not the fruit of their imagination or their past life.
“What have I gained from the group? Well, understanding about this disease. What needs to be understood. That you’re not to blame.” [P1_56 years old]
Understanding the different clinical manifestations of FM helped the women better understand their disease.
“I got a lot out of it [the group], especially the fact that I now understand that not all FMs are the same. There are people who have FM who can still work, who lead a half-normal life, there are others who do not, that the FM poses obstacles [...]. Sometimes you know, you can’t cope, you’re sinking, but then you talk to them [the group] and you know it will pass, that this is how the disease is, and that better times are coming, and that helps you.” [P3_64 years old]
Participants placed great value on being able to attribute their ailments to a specific disorder, so having a definitive diagnosis helped them to better manage their FM.
"Because the tunnel is dark, dark. When you have a diagnosis you begin to see that there is someone else behind all this, that there is a chance that it can improve.” [P1_56 years old]
The SSN helped the women acquire a better awareness of FM. The women explained that, while a better awareness of the disease was very useful, they often lacked the courage to face up to it, which was why they were encouraged by the SSN.
“I hadn’t told anyone because I thought it was something that I had to bear alone. But the group helped me understand the disease and what I had to say [to others], but as if it were a normal thing.” [P4_73 years old]
The SSN is a source of information for better FM management
Regarding the sharing of doubts, experiences, information, and knowledge, the SSN was described as a valuable resource that increased the women’s knowledge of FM, resolved their doubts, helped them tackle problems, and enabled decision-making and changes in their management of FM.
"Because they contribute things you might not have even thought about, and they make you think and see things differently [P6_42 years old]
Figure 1 illustrates the information obtained through the SSN that was considered especially useful by the participants.
The women explained that their FM diagnosis was not always accompanied by the information needed to deal with the disease; rather, much of this information was acquired from peers in the SSN. Participants commented that health professionals needed to provide more detailed information on FM.
“When they diagnose you, they tell you what you have, but don’t tell you what to do. They tell you to take painkillers when you are in pain, but they don’t tell you anything else.” [P4_73 years old]
However, participants did comment that it was primary care nurses who spent more time providing them with information.
“The primary care nurses never allot you just five minutes, nor do they change the subject.”
[P1_56 years old]
Better knowledge about FM and about lifestyles adopted by SSN peers encouraged women to incorporate beneficial habits in their own routines and to improve how they managed the disease.
“I've learned the gym exercises we need to do ... I’ve also made changes in my eating habits. I'm adding things I didn’t know before.” [P2_56 years old]
However, one perceived barrier to acquiring knowledge was when people with negative perceptions participated in the SSN.
“What happens, though, is that sometimes we meet and someone is very negative, that makes things go wrong.” [P1_56 years old]
Effects on wellbeing and QoL
The SSN attenuates FM stigma
Stigma in relation to FM was identified as a crucial factor with direct negative repercussions for people with this disease.
“For whoever has one of these diseases it’s a stigma. I don’t want it to be known. I have it, the group knows, but that’s it. I wouldn’t like it to come out.“ [P1_56 years old]
Participants explained that stigma was evident in the family and in friends, but especially in the work environment.
“For example, I didn’t tell my friends and family until a year and a half had gone by, ... because it was a time when it was said that FM is for people who have a bit of depression that they don’t know how to handle. I didn’t mention it, not even to my children.” [P4_73 years old]
The women’s perceptions were that they were often labelled by co-workers as people with little desire to work.
“[They say] You make up stories, you’re lazy, you’re loafing, and that you don’t want to work, to do anything. And you feel very useless. And sometimes that’s what hurts you the most.” [P2_56 years old]
FM was described as having a particular impact on strong people, who often cover up their symptoms over several years. The women considered the peer SSN to be a space where they felt liberated, as there they felt they could openly and uninhibitedly talk about the impact FM had on their lives, over and above the symptoms.
“It’s like emptying the backpack you’re carrying.” [P2_56 years old]
SSN participation therefore reduced both the stigma of FM and the women’s perceptions of guilt. The SSN afforded them a space where they no longer felt they had to suffer in silence but could give expression to their pain.
“I didn’t say anything because I thought it was something I had to go through and I shouldn’t say
... I didn’t want to complain! This [group] helped me to say it, but as something normal.” [P4_73 years old]
The women felt that the SSN enhanced their capacity to cope with their disease, to share their thoughts and feelings, and to deal with the stigma they perceived in their surroundings.
“The group has helped me to be more honest with myself. Not to hide the disease and not to think what others might say… it has helped me to be more myself, to trust more.” [P4_73 years old]
3.2.2 The SSN improves physical wellbeing by helping with symptom control
The participants unanimously agreed that pain was a common feature of their FM.
“Maybe nothing hurts, but there’s no energy to do anything. And there are times when everything hurts.” [P1_56 years old]
The women reported experiencing constant pain, which usually increased at night. Being able to share their perceptions of pain with peers in the SSN helped them control the pain; in other words, the SSN acted as a protective factor.
“It hurts just the same, but your head is disconnected [from the pain]. And that moment of disconnection is very good for you.” [P1_56 years old]
“We talk a lot about the pain ... and then we send each other motivational words ... this encourages you and makes the pain less.” [P5-49 years old]
Similarly, in relation to mood disorders, participants reported that the SSN helped them control and regulate their anxiety. Broadly speaking, the SSN was a key source of emotional support that greatly helped with mood management.
“Uf, you know that just speaking here, I feel better!” [P2_56 years old]
“When someone is very down … like, today I’m feeling really depressed ...well, we encourage each other, you know.” [P5_49 years old]
The SSN provides emotional support and bolsters self-esteem
According to the participants, the peer SSN was a source especially of moral support, understood as having a purely emotional or psychological value.
“It helps me a lot ... emotionally, to be able to get support from people you know understand you.” [P5_49 years old]
All the women recognized the importance of this support, especially those who had less family support.
“It’s very obvious that, for different reasons, some people do not have the support of their family and so they look for it in the group… they need this support.” [P3_64 years old]
The women commented that the stories of their SSN peers helped them identify better with others with the same disease, connected them with their own emotions, and helped them to cope better.
“The group helped me, because of my age, I saw younger people ... I was managing well, but seeing young people with a lot of pain made me think.” [P4_73 years old]
People with more FM-related health problems tended to have more difficulty in opening up to their SSN peers. In this case, the support was provided more individually than at the group level.
“Some people are very down ...these we support privately.” [P1_56 years old]
The WhatsApp group was considered to be a very powerful facilitator of exchanges of support among the SSN peers.
“In the WhatsApp group we ask: So, how are you today? or, how are you not today?” [P1_56 years old]
As for general emotional wellbeing, the participants expressed their satisfaction with the peer SSN as a resource that fostered self-esteem and positive attitudes. A more positive perspective on the disease proved to have beneficial effects on the women’s health, improved their confidence, and helped them foster healthy relationships and lifestyles.
“There were days when I couldn’t even get dressed, it was like there was a rage inside me ... It was typical to see people exercising there [in the group] ... and with their help I was more positive, seeing that there were things that I hadn’t even thought I could do.” [P6_42 years old]
All the participants reported that being able to help other people in the SSN, and especially those most affected by FM, had a positive impact on their own wellbeing, as they felt recognized, important, and necessary.
“For example, when I explained relaxation techniques to them and saw that they wanted to know more ... I saw that what I was telling them was good for them.” [P2_56 years old]
The SSN is a socialization medium
In relation to socializing, the women explained that the SSN increased their socialization opportunities. Participants indicated that since the SSN was created, they participated in more activities and went out more, and, as a result, they were more motivated to take care of themselves and to care for their appearance.
“There came a time when we began to meet up even after the group had ended.” [P4_73 years old]
“It was great sharing the experiences of the week with other people ... How did the week go? How was your week? It was that, sharing your illness with other people ... In that sense, for me it was very positive, very, very much so.” [P3_64 years old]
The SSN made the women feel more accompanied. They explained that being part of the SSN and sharing with peers diminished feelings of loneliness, which, in turn, had a direct and positive impact on their wellbeing and QoL.
“Before finding the group…. it happens that you feel very, very alone.” [P2_56 years old]
“Emotionally I don’t feel so alone […] The fact of sharing and having people who understand me makes me feel less alone.” [P5_49 years old]
Participants also reported that the peer SSN had a positive impact on their relationships with other people in their lives, whether family, friends, co-workers, or other people in the community. The SSN was considered to facilitate socialization, both with their SSN peers and with other people outside the SSN.
“That helped me, to open up more… to the other people around me.” [P4_73 years old]
Valuable aspects of the SSN
The SSN transmits a feeling of being understood
Participants reported that they felt a high degree of frustration, given that society largely does not understand what people with FM go through, and they related this to a feeling of being misunderstood and so not having their needs met. The SSN, they noted, helped them alleviate their feelings of frustration.
“The group helped me accept that there were things I couldn’t do, it helped me a little, no, a lot
... because I’ve always been very active and was always doing lots of things. And feeling limited or that there were days I couldn’t even get up, that was tough … it’s like, you know, this can’t be happening to me.” [P5_49 years old]
The SSN facilitated the women’s identification with a peer group; the group as a source of empathy meant that the women felt emotionally understood by their peers. This empathy was described as a fundamental aspect of the SSN.
“Finding a group to share what I’m going through helped me a lot ... Before joining it, I found that many people do not understand FM [...], but here you find people that explain things and tell you things ... and it makes you feel really understood. You can share your pain or they share their pain; you understand them and they understand you [...]. You find that there are people who feel the same as you.” [P2_56 years old]
The women explained that, in general, sharing needs, desires, perceptions, and goals with other people in the SSN increased their sense of identity and belonging to the SSN.
“I feel like I belong to a likeminded group of people.” [P2_56 years old]
The SSN transmits a feeling of being listened to
Participants reported that, in their family and social settings, they felt an absence of active listening, understood as an ability of others to know how to listen and understand. The women therefore appreciated their SSN peers for showing interest in them, making time for them, and actively listening to what they were saying.
“We do a lot of psychology, which …well, maybe I need it more than the others, or maybe not ... but you see people in great need, they are listened to and they feel understood.” [P6_42 years old]
The SSN increases personal feelings of satisfaction
An enhanced feeling of personal satisfaction was reported by the women as one of the most valued aspects of the peer SSN. They explained that, since becoming part of the SSN, they generally felt better about themselves and felt more encouraged to achieve goals in relation to their disease.
“The talks we had (with a lot of positive emotions), the laughter … because it wasn’t just talk about FM, it was many things ... the truth is we had a great time.” [P3_64 years old]
“Well ... to say that it’s very positive, at least for me, who’s never been in any group ... It’s very positive I would 100% recommend we continue together, it’s great!” [P6_42 years old]