Fibromialgiala enfermedad silenciada : percepciones, significaciones y estrategias de autoatención

Laburpena

In this study, we investigate the sociocultural meanings built up around fibromyalgia which transcend the � scientific evidence� o f the biomedical model. The main symptom o f this complex illness is chronic pain, although it is also accompanied by a series o f other changes (changed sleep patterns, fatigue, and so on). We analyse how pain affects people in a holistic way (in their daily activities, social relationships, and so on). For this reason, we have drawn up a life itinerary o f the people affected by this illness to show the process o f diminishing good health (?), seeking help and self-care strategie put into practice by people suffering from this illness to benefit their independence. We study the different perceptions o f those affected from the Phenomenology o f Perception model (M. Merleau-Ponty, 1964) in conjunction with the Health-Illness- Care model (E.L. Menendez, 2000). These two models allow us to rebuild the � life itinerary� o f those people affected by this illness, from domestic and social areas and the collective help network formed by a Fibromyalgia association. On this basis, we set out to investigate the perceptions and meanings which Fibromyalgia sufferers have in their life history in the illness-suffering-care process, and discover their reasons for keeping their illness a secret and the self-care strategies which they adopt to improve the quality o f their lives. The study starts in October 2007 in the Fibromyalgia Association (AEMFAL) located in Aljaraque (Huelva). All o f the participants have been officially diagnosed with fibromyalgia by a biomedical professional. We use the Ethnographic Method, as it is an ideal qualitative research procedure for studying the social reality o f people who suffer from this condition, thanks to its flexible, holistic, inductive and descriptive nature. The main research technique is participant observation. We complete the ethnological study with the analysis o f the discourse o f different life stories, individual and collective oral accounts, observations, forums and Internet blogs. The chosen research design plan favours an open selection and sampling, ad hoc. In order to organise the information obtained, we set up a series o f relevant thematic categories, such as health/illness, biomedical/other forms o f care, and so on. With this investigation, we take a different focus, approaching the topic from the experiences o f those people affected, observing how they cope in the social environment o f the association and analyzing their comments, which gain special prominence in terms o f social and cultural anthropology and, more specifically, in the field o f health. From the conclusions we highlight the fact that the lack o f public healthcare resources in the community in Huelva draws out the diagnostic process and leads to inadequacies in patient care. Furthermore, those affected perceive an unsatisfactory relationship with the biomedical professionals who see them, mainly those from the public healthcare service. The absence o f information with respect to use and the lack o f monitoring o f prescribed treatment can lead to sufferers abandoning the Therapeutic System. Those affected feel strange in a society which prioritises a healthy body. For this reason, they use � silence� as a protection strategy. From an androcentric perspective o f health, feminising and illegitimising fibromyalgia generates bias and inequality in healthcare. The associations make up for sufferers� lack o f knowledge with educational activities (courses, workshops, and so on). During these, sufferers design their �own therapeutic suits� , with the aim o f improving their quality o f life. The lack o f adequate evaluation criteria does not allow biomedical professionals to identify or measure, in medical checks, the degree o f disability which fibromyalgia sufferers have.