Disability and Rehabilitation

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“I just want my life back!” - Men’s narratives about

living with fibromyalgia

Merja Sallinen & Anne Marit Mengshoel

To cite this article: Merja Sallinen & Anne Marit Mengshoel (2017): “I just want my life
back!” - Men’s narratives about living with fibromyalgia, Disability and Rehabilitation, DOI:
10.1080/09638288.2017.1395085

To link to this article: http://dx.doi.org/10.1080/09638288.2017.1395085

Published online: 26 Oct 2017.

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 DISABILITY AND REHABILITATION, 2017
https://doi.org/10.1080/09638288.2017.1395085

ORIGINAL ARTICLE

“I just want my life back!” - Men’s narratives about living with fibromyalgia
Merja Sallinena,b
and Anne Marit Mengshoela
a
Institute of Health and Society, Medical Faculty, University of Oslo, Oslo, Norway; bFaculty of Health and Welfare, Satakunta University of
Applied Sciences, Pori, Finland

ABSTRACT ARTICLE HISTORY

Background: Fibromyalgia is characterized by chronic widespread pain and an array of other symptoms. Received 12 June 2017
It is less common among men than among women and the results concerning the severity of men’s Revised 9 October 2017
symptoms are contradictory. The purpose of this study was to elucidate the impacts of fibromyalgia on Accepted 17 October 2017
men’s daily life and work ability.
Methods: The data were collected through life story interviews of five men with fibromyalgia. KEYWORDS
Downloaded by [Australian National University] at 08:16 31 October 2017

Results: The results of a narrative analysis are presented in a form of two model narratives: “Adjusting Chronic pain; work ability;
the life to match the illness” and “Being imprisoned by the pain”. The first narrative is a description of rehabilitation; men’s health;
finding a balance between the illness and wellness, whereas the second is an account of debilitating qualitative research
symptoms, unsuccessful treatment, and rehabilitation interventions.
Conclusion: The results suggest that adjusting one’s activities may help to manage the symptoms and to
support work ability in many cases but for some patients the experience of feeling healthy or pain free
might be nothing but a fading memory. Narrative approach is well applicable to rehabilitation of patients
with fibromyalgia: an illness narrative may help the patient and professionals to understand the situation
better and to set realistic and relevant goals for rehabilitation.

ä IMPLICATIONS FOR REHABILITATION

 In addition to chronic pain, men with fibromyalgia suffer from daytime tiredness and cognitive chal-
lenges that substantially interfere with their work ability and daily functioning. Vocational rehabilita-
tion interventions, including e.g., adjustments of work tasks and hours, should be started early on to
support work ability.
 The results indicate that psychosocial support is needed to improve health related quality of life of
patients with severe and complex symptoms, especially if return-to-work is not an option.
 Men with fibromyalgia seem to lack peer support both in face-to face groups and in on-line groups.
“All-male” support groups could be explored in rehabilitation settings in the future.
 Using a narrative approach in rehabilitation might result in a shared understanding of the patient’s
situation. This could help the professionals to set more individual, realistic, and relevant goals for
rehabilitation, which in turn might improve rehabilitation outcomes.

Introduction
Fibromyalgia has a fundamental influence on a person’s occupa-
tional, personal, and social life as well as on her/his future per-
spectives and beliefs [1,2]. On societal level, fibromyalgia seems to
lead to substantial decrease in productivity at work and even
non-working patients report losses in household productivity due
to their illness [3]. In addition, fibromyalgia limits participation in
various activities outside the home, including work, hobbies, and
any social engagements that require spontaneity [4,5].
Fibromyalgia is characterized by chronic widespread pain,
sleeping disorders, and fatigue together with an array of other
symptoms, such as memory and concentration problems, anxiety
or depression [6]. According to the current paradigm, the symp-
toms result from neurochemical imbalances in the central nervous
system [7]. For unknown reasons, fibromyalgia is more common
among women than among men and accordingly, there has been
little focus on men in the research. In some studies, women
accounted for 80–90% of the patients when diagnosed with the
criteria published by the American College of Rheumatology in
1990 [8,9]. However, when using the new modified ACR-2010 cri-
teria, Wolfe et al. [10] found no significant differences in preva-
lence between men and women in general population: the
prevalence was 1.8 and 2.4% for men and women, respectively.
Moreover, they pointed out that in clinical populations, nine out
of ten patients who seek help for fibromyalgia symptoms are
women. Hence, it seems possible that men with fibromyalgia
symptoms do not seek for help as often as women do or are not
recognized in health care.
The studies about gender differences in fibromyalgia have
yielded contradictory results. No significant differences between
genders in symptom severity were found in some studies [11,12],
whereas others have shown that in comparison to women, men
with fibromyalgia may have more restrictions in their physical,
mental, and social functioning [13–15].

CONTACT Merja Sallinen merja.sallinen@samk.fi post doc researcher, Institute of Health and Society, University of Oslo, Postbox 1089 Blindern, N-0317 Oslo,
Norway

Corresponding author’s post doc fellowship in Oslo ends in the end of 2017, after which her address is Satakunta University of Applied Sciences, PL 1001, FI-28101
PORI, Finland
ß 2017 Informa UK Limited, trading as Taylor & Francis Group
 2 M. SALLINEN AND A. M. MENGSHOEL
Most of the qualitative studies on fibromyalgia have focused
on women’s experiences. Living with fibromyalgia has been
described as an ongoing struggle with a reluctant body, as a
struggle to maintain one’s dignity and credibility, and as a con-
stant effort to reconstruct one’s disrupted biography [16–18].
Fibromyalgia may not only decrease daily functioning but also
threaten one’s work ability. Sallinen et al. [19] pointed out that
some women with fibromyalgia were able to continue in a paid
work role after adaptations in tasks or working hours, whereas
others experienced permanent loss of work ability due to severe
pain and overwhelming fatigue. Mannerkorpi et al. [20] empha-
sized that possibilities to vary and adjust the work tasks and the
work environment were the main factors influencing whether the
women with fibromyalgia could continue in a paid work role or
not. All in all, difficulties in maintaining work ability seem to have a
negative impact on fibromyalgia patients possibilities to change
from one job to another or to find a job, e.g., after unemployment [3].
Few studies have described men’s experiences of living with
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fibromyalgia. Paulson et al. [21] noticed that men with fibromyal-
gia endured a lot of pain before seeking help because they did
not want to be looked upon as “whiners”. During the diagnostic
process, men felt like “guinea pigs” as they were exposed to
numerous examinations and treatment try-outs. The men stated
that as soon as they received the diagnosis, the health care pro-
fessionals lost interest in them, which had left them feeling
neglected by the health care system. Another study pointed out
that despite being ill, the men with fibromyalgia experienced a
state of well-being and they were able to create new interpreta-
tions of their illness and hence, managed to reach a tolerable
existence [22].
Purpose of the study
The purpose of this study was to explore how men with fibro-
myalgia manage their life and work. Not only were we interested
in “what” men with fibromyalgia talk about when they talk about
their illness experiences and changes in work ability, but also in
“how” they talk about them. The research questions were: 1) how
do the men with fibromyalgia experience the impacts of fibro-
myalgia in their daily life and work and 2) how do they express
their illness experiences and other life events in the form of a
narrative?
Narrative approach
According to McAdams [23], a narrative approach proposes that
individuals derive meaning from experience by positioning life
events within an evolving story with a distinguishable plot that
has a beginning, a middle, and an end. In the narratives, time and
temporality are not limited to chronological time. Rather than
that, a person’s experiences, the present time and expectations of
the future are comprised in a way that makes the events under-
standable for the listener [24].
Mattingly and Lawlor [25], pointed out that illness narratives
provide an “insider perspective” on what it is like for the person
who experiences bodily suffering. H€anninen [26] in turn, stated
that in social storytelling settings, narratives which were coherent
and dramatic, and which presented the narrator in a favorable
light were preferred, whereas problematic experiences that carried
a potential negative stigma often remained untold. Hence, people
tell their narratives differently depending on the situation, audi-
ence and context of storytelling, and every time the narrative is
re-told, it is different from the previous time [27,28]. Moreover,
Paterson [29] stated that as the personal and social context
changed, people’s perspectives shifted in the degree to which the
illness or wellness was in the foreground of their world. The ill-
ness-in-the-foreground perspective was characterized by a focus
on the sickness, suffering, loss, and burden of living with a chronic
illness, whereas in the wellness-in-the-foreground perspective, the
person attempted to create a balance between self-identity and
the identity that is continuously shaped by the disease. Therefore,
illness narratives may provide meaning, context, and perspective
to patients’ predicament [27,30].
Ethics
This study is part of a larger research project in which data are
collected both in Finland and in Norway. The study was con-
ducted in accordance with the Helsinki Declaration and the
research plan and protocol were approved by the local ethical
committees in Finland and in Norway (Board of ethics of higher
education institutions in Satakunta, Finland, 3.12.2016 and REK
Sør-Øst D 2016/2242, Norway).
Participants
For the present report, participants were recruited through volun-
tary organizations in southern Finland (e.g., local rheuma associa-
tions, national fibromyalgia association). An information letter
including a short version of the research plan explaining the back-
ground and purpose of the study was sent to given associations
to be distributed to their members. In the letter, men with fibro-
myalgia were invited to contact the interviewer by e-mail for a
preliminary discussion and to agree on the time and place for an
interview.
In total, six men with fibromyalgia volunteered to participate,
but one of them withdrew from the study soon after the prelimin-
ary contact. The five men with fibromyalgia who participated in
the interviews were all native Finnish speakers and lived in the
southern part of Finland. Their age varied from 24 to 51 years (on
average 43 years). Two of them had vocational education and
three had bachelor level education. Time since diagnosis was on
average 12 years, ranging from 3–23 years. All participants had
had symptoms for at least two years before receiving the diagno-
sis. One of the participants was on permanent disability pension
due to fibromyalgia, one was doing reduced working hours (30 h/
week), and three were working full-time. Demographic informa-
tion of the participants is presented in Table 1.
Data collection and analysis
The first author collected the data through narrative interviews in
December 2016–January 2017. The interviews were conducted at
a time and in a place that was convenient for each participant:
three in participants’ homes, one at a participant’s workplace and
one in a cafe. In the beginning of each interview session, an infor-
mation sheet was reviewed and a written consent to participate
was asked and obtained. The interviewer also asked if recording
the interview was permitted and assured that recording could be
stopped at any point if needed.
A three-phase technique introduced by Rosenthal [31] was
applied in the interviews. First, the interviewer asked the partici-
pant to tell his life story in his own words. She encouraged the
interviewee to include whatever he found necessary and to use as
much time as needed. During this narrative process, the inter-
viewer showed active and empathetic listening but did not inter-
rupt until the interviewee signaled that he had finished. In the
second phase, the interviewer asked questions that emerged

Table 1. Key demographics of the participants.
Time since Time since
the onset of diagnosis
Pseudonym Age symptoms (years) (years) Family situation
Pete 24 Six Four Married, one child
Pekka 45 26 23 Married, two children
Jussi 43 Five Three Married, several children
Martin 51 12 10 Married
Jari 52 22 20 Divorce, one adult child
during the narrative process, e.g., “Could you give an example of
that kind of a situation?” or “what was your work like at that
time?” The purpose of these questions was to fill in gaps in the
story and to enrich the account with more detailed information.
In the final stage, the interview was closed with a general discus-
sion on fibromyalgia and with reflections on the interview process.
The interviews took on average 2 h (range 1.5–3 h). The inter-
viewer recorded the interview on a digital recorder and tran-
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scribed it verbatim within two weeks after the interview.
In the first phase of the narrative analysis, the recorded mater-
ial was listened to alongside to the transcripts to check the accur-
acy of the transcription. The transcribed material was read several
times to get the idea of the whole of each narrative. In the
second phase, the life events were organized chronologically and
a one-page condensed version of each life story was created. In
the third phase, the focus was on “what” the men actually said
about the impact of fibromyalgia in their daily lives. The prelimin-
ary findings were elaborated with the second author. In the final
phase, the focus was on “how” the stories were told; e.g., what
kind of wordings were used, what were the turning points in the
storyline, or how did the narrators present themselves in the life
story. Furthermore, the plots and events that were presented in
the told narratives were compared throughout the data to create
model narratives, i.e., create typical or distinguishable storylines
based on the data.
Results
The men told their life stories in very different ways. Some of
them started by describing their childhood and adolescence
briefly, after which they moved on to adulthood and the onset of
fibromyalgia symptoms, the diagnostic process, and changes in
their personal and professional life. Some of the interviewees
started their life story from the onset of the symptoms and dis-
closed some earlier life history later, if they found it necessary. In
the narratives, men often made comparisons between “then” and
“now”, where “then” referred to the time before fibromyalgia
when one’s functioning was not restricted by fluctuating symp-
toms and work ability was not questioned. “Now”, in turn, repre-
sented their current functioning, which was often reflected upon
the ability or inability to maintain a role in the working life.
Men’s encounters with the medical doctors were often charac-
terized by negative attitudes from the doctors and the diagnostic
process was described as a heavy, long, and arduous process for
the patient. In most cases men’s original reaction to fibromyalgia
diagnosis was described as disbelief; “I cannot have it, I am a
man!” The interviewees perceived themselves as outsiders even in
the peer groups and rehabilitation courses, because there were
usually no other men with the same diagnosis in these settings.
Further, one of the interviewees told that he had never met
another man with fibromyalgia.
In the following, the findings of the narrative analysis are pre-
sented in the form of two fundamentally different model
MEN’S NARRATIVES ABOUT LIVING WITH FIBROMYALGIA 3
Work status Type of occupation
Full time work Service technician/sales person
75% work þ25% disability pension Health care professional
Full time work Entrepreneur, construction engineer
Disability pension Marketing professional
Full time work Engineer (superior position)
narratives, which shed light on different aspects of living with
fibromyalgia, namely “Adjusting life to match the illness” and
“Being imprisoned by the pain”. In these model narratives, after a
seemingly similar beginning, the storylines differ and reach distin-
guishable endings concerning current functioning and anticipated
future. In the text, we mainly use quotes from interviews of two
men in order to restore the narrative nature of the data. These
particular men (Jari and Martin) were chosen because they were
able to reflect upon their life events and illness experiences from
several different perspectives and they used vivid language and
to-the-point examples, thus providing versatile and evocative data
for the analysis.
In the extracts, three dots denote pausing in speech ( … ),
underlining shows emphasized words and [ … ] denotes omitted
text. We also provide some additional information in square brack-
ets [e.g., context] to help to understand the content of the quote.
All names are pseudonyms and we have deleted or changed other
identifying details to protect the anonymity and integrity of the
participants.
Adjusting life to match the illness
The first model narrative “Adjusting life to match the illness” was
a description of finding a gentle balance between health and ill-
ness and between work ability and disability. In this model narra-
tive, current situation was experienced as manageable and
satisfactory, although many restrictions in functioning challenged
the daily life of the participants.
Jari, who is used here as an example, worked as an engineer in
a large industrial enterprise. He was divorced and lived alone. He
had had fibromyalgia for 20 years and he had made big changes
in his work, hobbies, and diet to manage the symptoms. He
described himself as “A man who keeps both feet on the ground
and tolerates stressful situations well”. In the following text, we
also refer to the life stories of three other men with parallel story-
lines (Pete, Pekka, and Jussi).
The symptoms of fibromyalgia were at first interpreted as nor-
mal pains and aches or common sleeping problems that every-
body has every now and then. However, when the symptoms
deteriorated rather than waned, it was necessary to seek help.
The diagnosis was experienced as a relief: finally, there was a
name for the ailments! Jari explained:
“I went from one doctor to another to find out what it is but they only
prescribed stronger and stronger painkillers … then the physio said that
my symptoms resemble those of fibromyalgia and suggested that I
should see a rheumatologist … The rheumatologist knew right away
what this was, [ … ] and spent another 30 minutes to explain what I
should do … [ … ] It was a relief. Two years of uncertainty and confusion
ended right there … ”
The participants described vividly the pains and aches they
had earlier and how the pain intensity fluctuated from one day to
another. On good days, the pain was almost non-existing, but on
bad days, it could be agonizing. In the accounts, work ability was
 4 M. SALLINEN AND A. M. MENGSHOEL
not only threatened by musculoskeletal symptoms, such as pain
or stiffness of the joints, but also by sleeping problems that
caused severe daytime tiredness and fatigue. Men used wordings
like “low mood”, “feeling sort of depressed”, and “heavy-heart-
edness” when telling about the psychological impacts fibromyal-
gia had on them. Jari had a clear opinion on how fibromyalgia
affects one’s mental wellbeing:
“A certain kind of heavy-heartedness is part of the picture … it is in the
background all the time … sometimes more and sometimes less …
every now and then I have depressive symptoms … but I have
understood that it is a part of this; you have a chronic illness … you
use 30% of your mental capacity just to tolerate it! … but it does not
restrict me as such.”
Symptoms related to mental wellbeing were perceived as toler-
able, whereas cognitive challenges were presented as embarrass-
ing and disturbing, especially concerning work performance. Men
used wordings such as “my mind was not clear” or “my thinking
was clumsy” to express the occasional fog-experiences, which
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were often linked to tiredness or poor sleep. In addition, the men
recounted vividly about total memory gaps-blackouts-that were
not associated with other symptoms but came unexpectedly and
how it sometimes took a long time to get one’s cognitive per-
formance back to normal level. The fear of having a more severe
cause for memory deficits, such as early dementia or Alzheimer’s
disease, was often implied and in some cases clearly expressed.
The following excerpt from Jari’s interview illustrates these
experiences:
“For example, somebody comes to my office with a question or a
problem … and I am just like … ??? … [ … ] … I don’t necessarily even
understand what this person asked … and it takes time … and he is
like ‘are you not going to answer’ … and I have to ask ‘what was your
question again?’ … it always comes out of the blue, unexpectedly
[ … ] … I really have to struggle to be able to answer at least
something … ”
The men acknowledged that the pains, tiredness, and mental
challenges had affected their social relations and family life. They
said that sometimes there was no sufficient energy to participate
in domestic chores or play with the children. When the pains
were more severe, they also were more easily irritated, and
needed more time for themselves than usually. Naturally, all this
had put a strain on the relationship with the spouse and children.
The men expressed their disappointment for not being able to be
the father or husband they wanted to be or had been before the
onset of symptoms. However, the support and understanding
expressed by the family members was seen as essential in terms
of managing the daily life and coping with, and despite the ill-
ness. Jari, who was single, had made a conscious decision to with-
draw from social contacts outside work for the time being. The
following extract sheds light on this issue:
“Just the other day I noticed that I have enough social contacts during
the working day … I do not long for more [ … ] … it would be
mentally too distressing to start a relationship now on top of everything
else … [New job] … I do not want to have too many parameters there
now … ”
One strategy to maintain work ability was to decrease the
amount of leisure time activities. The participants acknowledged
the importance of physical activity and strived to find an activity
that would not aggravate the pains and aches. However, balanc-
ing in-between sufficient amount of activity and rest was per-
ceived as difficult. Some of the men had given up their earlier
hobbies to avoid additional physical loading that had caused
intolerable pains or fatigue in the following days and thus dis-
turbed their work performance. Giving up activities that one had
enjoyed earlier was seen as a negative but inevitable result of the
restrictions caused by fibromyalgia.
“I have always been a very sport-oriented person, but I had to give up
some hobbies … I used to do competitive dancing, but I noticed that
my body did not tolerate it anymore … [ … ] … It was too burdening
… as fun as it was … I just had to admit that my body does not
tolerate it anymore … ”
The interviewees described various adjustments they had done
in regard to work tasks or working hours in order to be able to
continue in paid work. For Pete, Pekka, and Jari, continuing in the
previous physically demanding job was not an option due to their
physical limitations, whereas Jussi expressed that due to suitable
medication and substantial increase in physical exercise he was
able to work full time without difficulty. The adjustments at work
meant e.g., transfer to physically less burdening tasks within the
same organization, reducing working hours or reeducation, and
change of occupation. For example Jari, had continued his studies
in order to be able to work as an engineer instead of the heavy
bodily work he did earlier. He reflected upon the choices he had
made:
“It was of course one tough choice when I realized that although I was
so young [32 at the time of diagnosis], I could not continue in that
work anymore, but had to find something else … You had to accept
the limitations [ … ] … and you really have to think over what you can
do for living in the future … ”
In this model narrative, the adjustments in activities, social life,
and work had led to a successful outcome concerning work abil-
ity: the men were able to continue at work, at least part time.
However, changing a job and acknowledging restrictions in one’s
functioning were not easy to accept. This was clearly expressed
by all the interviewees. Although, for example Pete had accepted
the situation as it was and was happy with his current life, he
snapped “I just want my life back”, thus expressing the constant
yearning for life as it was before the onset of the symptoms. The
men acknowledged that living with fibromyalgia now and in the
future required constant balancing in all sectors of life. Jari put it
clearly:
“You have to adjust everything to match the illness … right kind of
exercise, right kind of nutrition, enough sleep, and right kind of a job.”
Being imprisoned by the pain
In contrast to the previous narrative where the men were able to
adjust their lives and activities successfully, Martin’s life story
reveals an opposite storyline. The model narrative named “Being
imprisoned by the pain” is characterized by debilitating and com-
plex symptoms, unsuccessful treatments, and vocational rehabilita-
tion efforts, which had led to decreased self-esteem as well as to
feelings of hopelessness and despair. At the time of the interview,
Martin had suffered from agonizing musculoskeletal pains and
periodic headaches for more than ten years. He used strong pain-
killers daily and at times, intolerable pains forced him to get pain
medication as injections in the emergency clinic. He described
himself as a hardworking man with strong principles: “A man who
was raised to earn his own living and not to depend on others.”
Martin described in detail how the symptoms began and even-
tually forced him to seek medical help. He used several different
metaphors to underline the bodily symptoms he had at that time:
“as if I was 50 years older”, “in a tumble dryer”, and “as if I was
battered”.
“I was stiff as a board, I had a bedroom upstairs then and I had to
come down the stairs sideways … it was as if I were suddenly 50 years

older … It was as if I had spent the whole night in a tumble dryer … as
if I was battered … my whole body was so sore and painful.”
In the beginning of the symptoms, the doctors had repeatedly
told Martin to “pull himself together” or “think positively”. One
doctor had expressed his opinion clearly: “I will never give fibro-
myalgia diagnosis to a man!” Martin was annoyed by the com-
ments of some doctors who implied that he was malingering and
just trying to avoid work.
“ … I understand that you should be goal-oriented and just plug
away … but all that plugging away comes to a sudden end when you
have been [bed-ridden] in the dark with curtains closed … with your
infernal pains for a week. … Afterwards you are so exhausted that any
job would be easier than that. … There is no job harder than that, I’m
sure … ”
In this extract, Martin compared illness to hard work, thus
pointing out how exhausting it was for him to live with the symp-
toms of fibromyalgia. Throughout Martin’s story, there was an
explicit connection between the physical predicaments and per-
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ceived exhaustion, depression, and anxiety. When Martin was
eventually diagnosed with fibromyalgia by a psychiatrist, he felt
that he finally got some help and useful explanations for his
debilitating symptoms. Although no well-defined cure was avail-
able, it was easier for him to understand the situation. Martin
pondered:
“At first, I was reluctant; what the hell do I need a shrink for? I have
bodily symptoms! … but he [psychiatrist] explained to me how all this
burdens me … all these pains and fatigue … and worrying about how I
will manage … he explained to me the mechanisms behind these
problems … it was really helpful … ”
In his account, Martin pointed out repeatedly that when the
symptoms began, he was in good physical condition in terms of
endurance and strength, was exercising regularly, and has contin-
ued to exercise despite the symptoms. However, he found it
humiliating that due to his good physical fitness, his intolerable
pains, and other symptoms were often ignored or belittled in
health care. The following quote describes an incident during a
rehabilitation intervention:
“I was in a physical test where you had to lift 10 kg weights above your
head … there was a male sports instructor who looked like a body-
builder … I felt that they wanted to check if I was faking or something
… so I decided that I would really try my best … My result was the
best he had ever seen and he doubted if he could have done the
same … but they did not see how much pain I had … they just did not
see it … it does not matter how many times I can lift the weights …
life is not just about lifting weights above your head, is it?
At the time of the diagnosis, Martin was unemployed and had
noticed that it was challenging to find a new job that he could
manage, considering the restrictions he had. He had participated
in numerous vocational courses to update his professional skills
and competences over the years, but that seemed to have no
effect on employment. Rather than that, he fell in-between the
social support systems; he was too sick to be able to work, but
simultaneously he was too healthy to have disability benefits.
After several rejected applications for disability pension, Martin
was sent to a work try-out where his cognitive functioning was
examined in addition to physical and mental performance. Based
on the results of the neuropsychological tests Martin was granted
disability pension some years ago. He recounted:
“In the follow-up test, it had decreased significantly … in terms of
concentration skills … and problem solving … I had the right idea but
was not able make any conclusions in the more demanding tasks [ … ] …
and they had made a note: ‘He is not able to continue the task or
communicate under pressure’ … they were able to pinpoint the problems
I had-and still have … that are relevant in terms of work ability … .”
MEN’S NARRATIVES ABOUT LIVING WITH FIBROMYALGIA 5
The restrictions caused by the complex symptoms had forced
Martin to make difficult choices that also had substantial impact
on his self-perception. He had pondered identity issues thor-
oughly after realizing that there was no return to paid work for
him. He explained:
“ … I used to be a very positive person and had succeeded in all my
endeavors … and then this illness came and it made everything
difficult … I tend to demand too much of myself and it was hard to see
that I could not fulfill my own expectations.[ … ] … it was not easy for
me to accept that I saw myself as a second-class citizen [not being able
to return to work].”
At the time of the interview, Martin struggled from one day to
the next and felt that the illness forced him to give up not only
working life, but also his integrity, and dignity. He used strong
expressions when describing his current situation, such as compar-
ing it to a prison. Furthermore, he presented the future as an
“endless today” where no improvements in the situation were
anticipated. The following extract illustrates these aspects:
“The pain imprisons me … you cannot plan anything … or travel or
anything like that … it restricts all that … It is about backing away
from free life … [ … ] it may well be that there will be a day when I no
longer remember how it feels to be healthy … this malaise has begun
to be a normal status … ”
Discussion
Qualitative research in general and narrative research in particular
focuses in reaching thick descriptions of a small number of cases
[32]. McMahon et al. [33] highlight that narrative research has the
potential to serve an emancipatory function, providing a voice to
marginalized individuals with little known illnesses. Therefore, nar-
rative approach is well suited to explore men’s experiences about
fibromyalgia. In the present study, we used purposive sampling to
reach a rich variety of experiences. The invitation to participate in
the study was distributed through local rheuma associations and
the Finnish fibromyalgia association, but it is impossible to know
whether they in fact forwarded the invitation letter to potential
participants, or further, if there were men with fibromyalgia in
their association. This may have limited the number of interested
participants. We acknowledge that the small number of partici-
pants is a limitation of this study and that a bigger number of
participants could have brought new perspectives into discussion.
However, we managed to recruit men with different social and
occupational backgrounds and with a wide range in age
(24–51 years) and thus reached different experiences concerning
working life and the illness-recovery process. Furthermore, the
data allowed us to adopt an analytic approach where not only
content of the accounts but also rhetorical means used by the
participants were compared and contrasted as suggested by
McMahon et al. [16].
In narrative research, the interaction between the interviewer
and the interviewee has substantial impact on the quality and
content of the data [34]. In this study, the interviewer made con-
scious efforts to show empathetic and active listening. She was
obviously perceived as easy to approach and trustworthy as the
men talked freely even about difficult issues, such as depression
or difficulties in their personal, or family life. However, we acknow-
ledge the subjectivity of the approach: other researchers might
have heard different stories or might have ended up with differ-
ent findings even when analyzing the same data.
According to our interviewees, a man with fibromyalgia seems
to carry a double burden in terms of credibility in our society:
being a man with a “women’s illness” and having a contested
 6 M. SALLINEN AND A. M. MENGSHOEL
diagnosis. The negative and prejudiced attitudes expressed or
implicated by the medical doctors, friends, or work colleagues
were described in many accounts. Furthermore, lack of peer sup-
port from other men with fibromyalgia was underlined as part of
the burden. The men felt that they did not fit in with the face-to-
face or internet support groups, where the participants were
mainly middle-aged or elderly women, and expressed a feeling of
loneliness in these settings. As Sallinen et al. [32] pointed out the
experience of reciprocity in peer support groups seems to be
essential to extend the process from “peer talk” to mutually help-
ful support. The benefits and limitations of “all-male” support
groups in rehabilitation settings could be explored in the future.
The model narrative named “Adjusting life to match the illness”
was a success story where the men managed to find a balance
between the symptoms and their daily activities, and were able to
continue in a paid work role. This is in concordance with Paulson
et al. [22] who discussed reaching a state of wellbeing despite the
illness. Reflecting on Paterson’s [29] approach on illness and well-
Downloaded by [Australian National University] at 08:16 31 October 2017
ness perspectives, one can say that these men made conscious
efforts to disengage themselves from attention to the illness.
However, although the wellness was in the foreground of their
experiences, the illness remained in the background. The fact that
the men were willing to give up their hobbies- or in some cases,
their social life to maintain work ability suggests that for men the
paid work role is important not only from a financial perspective,
but also from the vantage point of identity. Our findings regard-
ing successful strategies to maintain or retain work ability are in
line with those described in studies among women with fibro-
myalgia [35,36].
The second model narrative “Being imprisoned by the pain”
drew a picture of a life with constant suffering, grueling pains,
and despair. This model narrative underlines the large variety of
illness experiences among men with fibromyalgia. Not all patients
are able to adjust their activities or manage their symptoms and
thus, reach a balance with the illness. Rather than that, for some
patients the experience of feeling healthy might be merely a fad-
ing memory and the future might seem hopeless.
Paterson [29] stated that people who assume illness-in-the
foreground perspective tend to be absorbed in their illness experi-
ence. In our data, Martin put himself in a difficult position when
trying to prove in a physical test that he was not malingering and
simultaneously pointing out the need to be accepted as ill or dis-
abled. This juxtaposition seemed to lead to an assaulted self,
rather than being acknowledged as the same hardworking person
as before. Feelings of loss of integrity or being humiliated in the
health care, and rehabilitation settings were interwoven with the
illness experiences throughout his life story. Losing not only one’s
health, but also one’s dignity and integrity when living with fibro-
myalgia has also been discussed in earlier studies on fibromyalgia
[4,37]. Improving the health related quality of life of these patients
should be addressed in rehabilitation e.g., by providing psycho-
social support, even if return-to-work is not an option due to their
complex and persistent symptoms.
In our data, one of the interviewees, Pete, had some elements
of both the model narratives presented here, albeit the emphasis
was strongly on the adjustment narrative. This in-between experi-
ence shows that categorization of life experiences can never be
conclusive or consistent. Rather than that, it can be countered by
different interpretations and by individual frames of discourse
[38].
Moreover, it can be discussed whether the requirements for
work ability are different for men and women due to the occupa-
tional gender segregation, i.e., the tendency for men and women
to work in different occupations and sectors [39]. Casini et al. [40]
emphasized that women are more susceptible to home-work
interferences than men due to the traditional distribution of gen-
der roles. In contrast, our results suggest that fibromyalgia has a
substantial negative impact also on men’s role at home and in
the family. Not being able to be the husband or father one
wanted to be due to the constant pains and fatigue was vividly
discussed in the interviews. This echoes the strong role of men in
families in contempory Finnish society or more widely, in the
Scandinavian culture. However, issues concerning loss of mascu-
line identity that were implied or expressed in the interviews of
this study need to be studied in more detail in the future.
Looking at our data as a whole, the language and rhetorical
means, which the men used, provided rich descriptions of men’s
everyday lives. Some interviewees used evocative metaphors and
examples to express their feelings and emotions attached to dif-
ferent illness experiences, whereas others showed a tendency to
“stick to the facts” and were emotionally less involved. This can
not only reflect the individual differences of the men as story-
tellers, but it can also relate to the need to be understood and
accepted as a credible patient.
The type of emotional storytelling that was described particu-
larly in the second model narrative where suffering, despair, and
loss were emphasized, seems to be common among women with
fibromyalgia [1,4,36] but in our data drawn from interviews of
men with fibromyalgia it was rare. It has been pointed out in ear-
lier studies that chaotic and emotional stories are difficult to listen
to and understand [36,41]. Therefore, men who talk about their ill-
ness experiences with an emotional accent, may easily be labeled
as psychiatric cases and their pain-related problems can remain
untreated. Ahlsen et al. [41] stated that men with chronic pain
often lack the opportunity and space to engage in emotional
storytelling due to, e.g., the unwillingness of the people around
them to witness their experiences and listen to them empathetic-
ally. Then again, if the story is presented in a very factual manner,
the severity of the symptoms and their impact in one’s daily life
may be ignored or belittled. This is a dilemma to the patients:
how to present my situation so that I am heard, believed and
understood and my experiences are not perceived as inflated or
purposively dramatized?
We argue that emotional accounts - especially those of men -
are overlooked in the health care and rehabilitation settings
because they are not the stories the professionals are trained to
hear. The professionals are trained to express the “medical history”
in a structured and standardized format in order to e.g., reach a
diagnosis or define appropriate treatment, whereas the patient
struggles to make sense of his illness experiences through narra-
tive story telling [30]. Rather than reflecting a challenging person,
a chaotic, and emotional life story reflects a life situation that
appears as uncontrollable, unmanageable, and non-understand-
able to the patient, i.e., lacks coherence and continuity. However,
by inviting to tell a life story, the patient is encouraged to reflect
upon his own experiences and to seek explanations and new
understanding of the situation, which can be a beginning of a
recovery process as such, as suggested by Rosenthal [31], Hyd en
[27]and more recently by McMahon et al. [33].
In conclusion, living with fibromyalgia had forced the men to
look at their lives, social roles and work from a new perspective.
According to our findings adjusting ones activities had helped to
manage the fluctuating symptoms and to support work ability in
many cases. However, it is noteworthy that not all patients with
fibromyalgia are able to adjust their activities and adapt to the ill-
ness. For some, fibromyalgia might mean losing one’s health or
work ability as well as losing one’s dignity, integrity, and future
perspectives.

In rehabilitation settings, we are expected to have the individ-
ual situation of each patient as a starting point but we often
seem to lack either time or tools to find out what kind of mean-
ings are ascribed to the given illness or its causes and consequen-
ces by the patient. Therefore, the professionals must develop their
own skills and treatment processes to help the patient to re-cre-
ate a coherent and meaningful narrative that eventually helps to
reach a shared understanding of the situation, which enables set-
ting individual, relevant, and realistic goals to the rehabilitation
process. This in turn, could result in stronger commitment to
rehabilitation and consequently, in better outcomes.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Funding
Downloaded by [Australian National University] at 08:16 31 October 2017
The research leading to these results has received funding from
the European Union Seventh Framework Programme (FP7-
PEOPLE-2013-COFUND) under grant agreement n 609020-Scientia
Fellows.
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