“The Things that are Inside of You are Horrible”: Children and Young Men with Duchenne Muscular Dystrophy Talk about the Impact of Living with a Long-term Condition

Abstract

Duchenne muscular dystrophy (DMD) is an inherited, progressive and life-limiting neuromuscular disease that affects boys. During their lives, they experience a series of medical and surgical interventions. Research reported in this paper took place in England with 37 young men living with DMD and their families and explored their experiences of growing up, school, work, friends and family. In accordance with the social model of disability, this research was initially reluctant to dwell on the physiological aspects of living with a long-term, degenerative condition. We focused on social model concerns about the disabling barriers to the participants' participation in society, the disabling responses of professionals and barriers to achieving their aspirations. However, young people with DMD also wanted to talk about how living with the condition caused them considerable pain and discomfort. They also explained the emotional impact of medical and surgical interventions. They reported very few opportunities to discuss these matters with family members or professionals. We explore possible reasons for the absence of discussion about these issues and reflect on the consequences for both the young person and their family. We suggest that a reluctance to tackle the thorny issue of “body” and “impairment” in social science research with disabled children and young people means that important aspects of childhood disability are under-explored.

Keywords:

• Disabled Children and Young People
• Physical and Emotional Impact
• Social Model of Disability
• Duchenne Muscular Dystrophy

Acknowledgements

The authors want to acknowledge and thank all of the young men, brothers, sisters and parents who took part in the research. The study was carried out with the cooperation of Professor Kate Bushby at the University of Newcastle, the Duchenne Family Support Group and the Muscular Dystrophy Campaign.

Funding

The research was funded by the Department of Health in England as part of a Research Initiative on Long Term Neurological Conditions (Project 0530009). The views expressed are those of the authors and not necessarily those of the Department of Health.

Additional information

Funding

Funding: The research was funded by the Department of Health in England as part of a Research Initiative on Long Term Neurological Conditions (Project 0530009). The views expressed are those of the authors and not necessarily those of the Department of Health.