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Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome”

Abstract Background “Ehlers–Danlos syndrome” (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with “hypermobile EDS”. Methods An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim. Results Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the “hypermobile EDS”. On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way. Conclusion There are specific reasons for a person with “hypermobile EDS” to participate in employment. These reasons are different for each person and may even vary in time. Implications for rehabilitation “Hypermobile EDS” greatly impacts activities and participation in daily life. “Living with limitations” is the central theme in the lives of “Hypermobile EDS” patients. Various aspects influence work participation in people with “Hypermobile EDS”, such as work pressure, tasks, and transport to work. Work has positive effects in the lives of people with “Hypermobile EDS.” Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with “Hypermobile EDS.”