Lived experiences in daily life with myalgic encephalomyelitis

Abstract

Introduction Myalgic encephalomyelitis is a complex systemic condition, causing severe symptoms that limit the quality of life of the people living with it. This study examined changes in life, coping strategies, and the ability to obtain a successful occupational adaptation in people with myalgic encephalomyelitis in Denmark, viewed from the perspective of the model of human occupation. Method In-depth qualitative interviews with seven persons with myalgic encephalomyelitis aged 31–61 years were analysed with qualitative content analysis. Results The participants experienced severe changes in their lives leading to impaired occupational competences which affected their occupational identity and made them lonely. Pacing and environmental changes were the preferred coping strategies in their attempt to adapt to the new circumstances. Conclusion The participants experienced major changes in everyday life with the onset of myalgic encephalomyelitis. Pacing and environmental changes were not sufficient strategies to secure a successful occupational adaptation. Thus, people living with myalgic encephalomyelitis need assistance to enable a successful occupational adaptation and preserve hope. Access to occupational therapy within the Danish programme for people living with myalgic encephalomyelitis may support more effective occupational adaptation in the population.