Objectives: Previous research has largely focused on the lived experience either of those who have fibromyalgia syndrome (FMS) or their spousal carers. This study aimed to explore the lived experiences of both those with FMS and their spousal carers.
Methods: Participants were aged between 38 and 65 years and all came from the south-west of England. Semi-structured interviews were conducted with four women with FMS and their spousal carers, who were interviewed separately. The resultant transcripts were analysed using interpretative phenomenological analysis. An overriding theme running throughout was loss of identity, which fed into a sense of isolation. Participants reported feeling isolated from: healthcare professionals, whom they felt they had to convince that they had something 'real', and from friends and family because the unpredictability of their symptoms meant that they were less able to plan ahead and often had to pull out of arranged outings. They also felt isolated from their identity because they no longer recognized the person that they once were, and struggled to recognize the person that they had become. As a consequence, the people with FMS and their carers were both engaged in a process of reassessing who they were, now that FMS had become such a large part of their lives. This sense of isolation was evidenced for the carers as well as the people with FMS and is documented in three sub-themes described in the paper: 'others' attitudes', 'invisible illness' and 'role'.
Conclusion: This study has provided new information regarding the lifeworlds both of people living with FMS and their spousal carers. We identified a number of practical and attitudinal barriers that had led to the diminution of social networks for both members of the couple and have explored the related clinical and theoretical implications of this.