“This Disease Is a Verdict You Must Live With for the Rest of Your Life”: Experiences and Perspectives From People Living With Adult-Onset Myotonic Dystrophy Type 1

Abstract

Myotonic dystrophy type 1 (DM1) is a progressive, multisystemic neuromuscular disease. DM1 has a biopsychosocial impact, causing physical and cognitive impairment and limitations in activity and participation as well as having social consequences. The aim of our study was to investigate experiences of and perspectives on living and coping with adult-onset DM1 to inform future targeted rehabilitation services. We conducted semi-structured individual interviews with 25 people with adult-onset DM1. Observational notes were taken during the interviews. Our study used the interpretive description methodology and Herbert Blumer’s theory of Symbolic Interactionism as the theoretical lens. The analysis identified two categorical themes and six subthemes: The meaning of living with DM1 and DM1’s influence on relations. Our findings showed that participants with adult-onset DM1 found meaning in their disease by reflecting on being diagnosed, understanding health information, and how DM1 influences daily living. Additionally, DM1 affected the participants’ interactions with others, thereby also influencing their relations. Our study contributes insights into how the intricate interaction with social relations and surroundings contributes to finding meaning when living with adult-onset DM1.