Osäkra 'sjukdomar' – dilemman och möjligheter : kvinnliga 'patienters' och läkares erfarenheter av kroniskt trötthetssyndrom och fibromyalgi

This thesis focuses on women with chronic fatigue syndrome (M) and fibromyalgia and how they depict their illness experience. Physicians' experiences of these patient groups have also been examined. This thesis is appropriated for the fields of medical sociology and illness experience research. The symbolic interactionism herein constitutes a theoretical frame of thinking.

Qualitative interviews have been conducted with 12 women who have been diagnosed with CFS and 13 women diagnosed with fibromyalgia as well as 26 physicians who were consulted by the women as described by the women in the interviews. The interviews were non- standardised and semistructured and were conducted based on two different interview guides. Each person was interviewed on only one occasion. The interviews were recorded on audiotape and transcribed verbatim. Grounded theory has been selected as the main analysis method.

The results show that for the women the illness signified a biographical disruption in relation to previous identities, since participation in different activities could prove difficult or rendered impossible as a consequence of the illness. However, biographical disruptions were described as being gradual. The majority of the women went through a biographical work when their identities were redefined in relation to the new situation, yet some of them attempted to maintain previous identities to a greater extent than others. Positive identity transformations were also outlined partly as a consequence of the women having re-evaluated the life they previously led.

It was principally the questioning of the women's credibility and thereby their moral character, the psychologising of their health problems and the characteristics of the diagnoses that were described as stigmatising. Stigmatisation was described as being experienced especially before the diagnosis was established. After the diagnoses were set, the focus was transferred from the women as individuals to the diagnoses and their characteristics, which was experienced as less stigmatising. In order to avoid stigmatisation and be accepted by others, different strategies were developed.

The women related that they sought knowledge, endeavoured to have some influence in the interaction with health-care providers and used power strategies with the aim of achieving increased control over the situation and their own health-care process. The power strategies described were often set in motion as a consequence of the differing ways in which the women and the health-care providers defined situations concerning patient status, cause of illness, or prognosis. Criticism was levelled towards physicians by several women regarding their competence to handle their problems and for not taking enough responsibility for helping them.

In the interviews, physicians expressed scepticism mainly regarding CFS, but also fibromyalgia, since these in substance cannot be defined as diseases and the level of seriousness could be toned down. The patients, as well as the diagnoses, could be assessed in moral terms. A discrepancy could arise regarding the physicians' ideal image of their professional function, and the reality met in regard to these patient groups, which could lead to negative sentiments. The physicians themselves pointed out the need for knowledge as well as support from others in handling these patient groups. Physicians gave descriptions of both patient- and physician-focused strategies used to manage the problems.

It was principally the uncertainty surrounding the illnesses, which could contribute to the problems experienced by both the women and the physicians. However, both sides described not only different dilemmas, but also possibilities for action with the purpose of overcoming the situation and achieving control.

List of scientific papers

I. Asbring P (2001). Chronic illness - a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia. J Adv Nurs. 34(3): 312-9.
https://pubmed.ncbi.nlm.nih.gov/11328436

II. Asbring P, Narvanen AL (2002). Womens experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qual Health Res. 12(2): 148-60.
https://pubmed.ncbi.nlm.nih.gov/11837367

III. Asbring P, Narvanen AL (2003). Patient power and control: A study of women with uncertain illness trajectories. Qualitative Health Research. [Accepted]

IV. Asbring P, Narvanen AL (2003). Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 57(4): 711-20.
https://pubmed.ncbi.nlm.nih.gov/12821018