Factors that influence how relationships adjust to a diagnosis of chronic fatigue syndrome: A grounded theory

Abstract

Background: There is relatively little research explaining how an intimate couple jointly adapt to a diagnosis of myalgic encephalomyelitis (ME)/ chronic fatigue syndrome (CFS). A large body of literature exists that investigates the impact of ME/CFS on the individual and a smaller body of work addresses the effect on the partner and the influence the partner has in the management of the condition. This research, therefore, sought to illuminate couples’ experiences of ME/CFS, in order to gain a greater understanding of the factors that influence adaptation to the condition in their joint relationship. A Grounded Theory Methodology was adopted to create a tentative theory of adaptation which could supplement the current evidence base and begin to inform future professional practice. Method: Eight semi-structured interviews were conducted with experiencers diagnosed with ME/CFS. Five interviews were conducted with the experiencer alone and three interviews also involved the experiencer’s partner. Interviews focused upon the couple’s experience of living with and adapting to ME/CFS. Interviews were analysed following the constructivist grounded theory principles outlined by Charmaz (2006). Findings: A tentative model of reconciliation was constructed which explained the couple’s journey from disruption towards adaptation. This tentative model explained how the couple manage ‘fundamental disruptions’ to their identities and expectations brought about by the introduction of a powerful entity ME/CFS (‘Illness identity or It’). The couple managed these disruptions by working through periods of ‘loss and grief’ using skills such as humour, communication and understanding. Through this process the couple were able to identify and begin to implement appropriate ‘adaptations’ that helped them to manage the impact of ME/CFS within their relationship. Conclusion: This research identified how ME/CFS impacts upon the individual with the diagnosis and their partner and illuminates that the process of reconciling with loss and grief and implementing adaptations is a joint journey. It highlights the importance of considering the couple and not just the individual in the management of ME/CFS and makes tentative recommendations that could inform professional support interventions in the future.