Exploring the work experiences of people with multiple sclerosis

Background: The large variety of multiple sclerosis (MS) symptoms and its unpredictable disease course contributes to it having a negative impact in every area of life, with employment issues being of significant concern for people with MS. Unemployment rates are very high in people with MS, and are associated with a reduced quality of life and increased financial burden for the individuals with MS as well as the wider society. The literature indicates that people with MS usually leave work of their own choosing and often before the disease has rendered them incapable of working. The relationship between disease-specific, demographic, and contextual factors and employment issues is complex and requires further investigation. Aim: To explore and create a better understanding of the work experiences of people with MS. Methods: Semi-structured interviews were completed with nine people (six women and three men) with MS, who were working. These interviews were recorded, transcribed and subject to interpretative phenomenological analysis (IPA). Results: All of the participants had tertiary level education. It was clear from the participants’ interviews that maintaining employment was challenging and their stories illustrated that work changes were inevitable. Despite distinctly different employment experiences, there were many common themes that linked the participants’ experiences together. The first theme of ‘Challenge’ ran throughout the narrative and was related to the MS diagnosis, its unpredictable progressive disease course, and the acceptance of it and the subsequent work changes required. A second theme was ‘Choice and control’ where the participants took control of their MS, and lives by being actively involved in choosing the work changes needed. The ‘Preparation for change’ theme illustrated the catalysts and influences leading to work changes, while the ‘Consequence of change’ theme explored not only the benefits of change, but also the demands imposed on the participants and others because of the work changes. Discussion and conclusion: The finding of this study supports previous literature that employment issues for people with MS are complex. It is however, one of the first studies that revealed the complexities associated with making work changes that enable people with MS to continue working. It would benefit people with MS if they were more cognisant of their changing capacity for work due to their evolving MS symptoms, in particular fatigue, physical problems and cognitive changes, and themselves instigated the necessary changes to be made for them to continue at work. In order to make successful changes, people with MS need to find acceptance of their condition, and possibly change their outlook on their future lives. It might be prudent to offer vocational support services to help them manage the challenges of working while living with MS and to help facilitate work changes. Clinicians could address issues around acceptance and disclosure, and promote and facilitate clients to maintain control of their choices. Further research is required to explore the experiences of those who have stopped work and those in manual labour type roles, and also what support services would provide the most effective support for people with MS