Journal of Multiple Sclerosis

Multiple Sclerosis and Work: An Interpretative Phenomenological Analysis of the Perspective of Persons with Early Stage MS

Archie de Ceuninck van Capelle1, Leo H Visser and Frans Vosman

Objective:This study explores the lived experience in their working lives of people with early stage multiple sclerosis (MS).

Method: Ten people at various stages in their careers (applying, employed, recently retired) who had been diagnosed with early stage MS were interviewed in open, in depth interviews. Transcriptions were analysed following a phenomenological approach.

Results: Six themes were found: the tiresome process of adjustment, inventing ways to do your work, feeling hurt about how others see your illness avoiding applying for jobs, embracing retirement, and mourning over lost work. Instead of relating these findings to mainstream theories that presuppose rather than investigate subjectivity (coping, selfmanagement, skills), we generalize these findings by relating them to the psychodynamic model of work of Christophe Dejours. This model is a clinical theory that offers an account of the relations between subjectivity, work, and action.

Conclusion: Current models of management and vocational rehabilitation maintain individual/group and body/mind dichotomies that don’t exist in the lived experience of work and rehabilitation of people with MS. It is recommended that professionals offering supervision or vocational services to employees with early stage MS or other chronic conditions relativize these models while offering professional help, and that they revitalize the art of listening as an act of inclusion and acknowledgement.