The lived experience of adults with myasthenia gravis: a phenomenological study

Myasthenia gravis (MG) is a disorder of the neuromuscular junction (NMJ) that causes fatigue and fluctuating muscle weakness. The physiology of this disease is well understood and there are numerous medically focused articles that outline historical data, randomized controlled trials of treatment options and unusual case studies. There is limited nursing literature about MG; most nurse-led research focuses on fatigue. No published research examines the life experiences of people with MG. The aim of this study was to examine and understand the lived experiences of adults with MG. An interpretive phenomenological approach has been used that applies the research methodology of van Manen (1990). Seven people living with MG were interviewed and their experiences of the disease recorded. Questions were broadly worded about various topics related to MG, that included diagnosis, symptoms, treatments and coping strategies, and were guided by individual experiences. Thematic analysis revealed that MG affects every aspect of a person’s ‘lifeworld’: their sense of time, body, space and their relationships with others. The findings of this study highlight three main themes embedded in the data that a person with MG experiences: living with uncertainty, living with weakness and living with change. These experiences have been interpreted and discussed to gain a deep understanding of the meaning of the disease. This study raises awareness of MG for nurses and other health professionals. It provides a unique view of the disease and explores the meaning of MG, from a perspective where a paucity of such literature exists