Exploring the lived experience of fibromyalgia using creative data collection methods

 

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Abstract

This paper reports the findings of a qualitative study into the lived experience of fibromyalgia. Fibromyalgia is a complex condition that is characterised by variability of symptoms and severity. Instead of applying a purely narrative interview approach, this research used a creative and expressive means drawing on interpretative phenomenological analysis (IPA) to make sense of the data, whilst applying an attitude of openness and responsiveness. In line with IPA, the findings reported here refer to a homogenous group of 5 participants drawn from a larger pool of participants. Participants were asked to create an identity box. They were required to respond to questions using physical and metaphorical representations and objects. The analysis and discussion highlight the link between existing theoretical conceptualisations of illness experiences and the participants’ fibromyalgia experience. The women talk about losses and gains in relation to fibromyalgia, but their overall sentiment is one of acceptance of the illness whilst continuing to fight the symptoms and trying to mitigate their impact. While liminality, biographical disruption, identity continuity and new normalcy are experienced and while elements of restitution, quest and chaos narratives can be identified, the fibromyalgia experience is more complex. It is argued that the chosen methodology through the identity boxes and the metaphorical representation allowed for this more holistic view of the fibromyalgia experience.