All women in the study had had problems with coping at work since the onset of the fibromyalgia symptoms. The majority stated how they absolutely loved their job, trying to persevere with work despite the complaint and diagnostic uncertainties at that time. Difficulties to continue working were generally related to physical inability and exhaustion. Two participants also mentioned cognitive disturbances as the obstacle for them to keep working. For example participant 5, aged 54 years, said:
'My cognitive disturbances were most annoying...I felt ashamed...
for forgetting so much.' Five out of the six participants also mentioned that high stress levels and sometimes an unpleasant atmosphere at work greatly sabotaged their capacity to continue their employment. Work pressure was considered a key barrier to cope. This was very strongly expressed by participant 6 (aged 54):
'There was the factor of stress as well...
ever increasing demands, I was really overworked and my employer didn't really show much empathy.' Liedberg and Henriksson [
12] related rising working pressure and rationalisation in society to the increased difficulty fibromyalgia patients experienced keeping their job. Previous qualitative studies [
13‐
15] also described an anecdotal link between stressful life events and the onset of the symptoms of fibromyalgia. It is therefore unclear whether occupational pressure experienced by these participants should be considered a trigger or rather a consequence of the condition.
At the time of the interviews five of the six participants were no longer at work, four of which were on benefits and one person on early pension. The exception was participant 3, aged 44, who worked reduced hours and was obliged to continue due to financial difficulties. As the majority of participants were no longer employed, the findings of this study do not coincide with epidemiological studies looking at occupational activity amongst people with fibromyalgia. Henriksson and Liedberg [
16], in a survey involving 176 women with fibromyalgia, found that 50% was employed, of which 80% counted to be able to continue working. However, it should be noted that only 15% worked full-time and 58% of the working women had already required a change in work situation. Possibly the type of employment may account for the difference between the working status of the latter study and this study. Several participants in this study worked within the caring sector, which often involves physically demanding activities. Moreover, the variation in national health benefit system and procedures to adapt work situations is likely to be another factor giving rise to this observation, as the study by Henriksson and Liedberg [
16] took place in Sweden. However, it could also just be by coincidence resulting from the limited number of participants in this study. The time between the onset of the symptoms and stopping working varied greatly from about six weeks to over ten years. Many participants expressed difficulty in accepting their occupational inability and described it as a long process. This was nicely illustrated by participant 6
: 'Initially when in our counseling group we discussed the way we pictured our lives, my job was still strongly connected with me, but at the end of the year I had taken leave of it...You need to become reconciled with it, but it is a long process to learn and live with that.'. Despite the love for their job and the struggle to accept their leave, most participants had reconciled themselves to stop working permanently as they perceived a return to their job impossible, nor did they think that appropriate adjustment of their work situation to their physical impairments was practically achievable. This is in line with the findings of Liedberg and Henriksson [
12] in a qualitative study looking at the factors important for work disability in patients with fibromyalgia, in which they described the grief many women felt resulting from their lost professional identity. The exception to this, in this study, was a younger person in her thirties. The age difference was most likely one of the factors that made this incapacity even more disruptive and hard to resign to. Lax and Klein [
17], looking at the impact of injury or illness on work, emphasized the role of an occupation in an individual's identity and self esteem. Moreover, Arnold et al. [
18] stated that the loss of former identity in fibromyalgia patients is strongly linked with loss of job. This observation was supported in this study, for instance participants emphasized that it was a long process to reestablish their identity in life having lost their work role. Together these findings contradict Hallberg and Carlsson's [
19] observations of a tendency of fibromyalgia patients to perceive their work situations as unsatisfactory.
There was a general feeling of financial uncertainty, connected with the inability to function at work and being dependant on disability pension. Participants said it was a worrying factor in their lives, due to a sense of fear of being obliged to go back to work again and the constant control and reevaluation of social benefit services. This came across to the participants as a suspicion of lack of credibility:
'I once had to see a doctor for health insurance...he said "so, when are you going back to work?"...I answered "tomorrow if I could!"...I started crying because of the disappointment! I would have loved to be able to return to work!' (Participant 6, aged 54 years). Although the way disability benefits are organized is dependent on the health care system of the country, in this case Belgium, the sense of uncertainty about health insurance and subsequent financial worry has come across in previous qualitative studies [
18].