My story, my identity and my relationship with work: sickle cell disorder

This study explored the narratives people living with sickle cell disorder construct to explain how the experience of employment influences their identity and subsequently their quality of life.
Nine individuals with sickle cell disorder were interviewed and gave detailed autobiographical narratives which were transcribed and processed using narratives analysis. Participants were 4 men and 5 women aged between 22 and 60 years.
Participants' passion for their job roles was illustrated by their positive work identities. Earlier experiences were felt to be influential on drive and resilience to work challenges. In the narratives, poor understanding of sickle cell disorder by organisations and reduced ability to manage their condition impacted physical health; psychological and emotional wellbeing; social and cultural experiences.
This study has implications for the clinical practice and future research of adults living with sickle cell disorder, contributing to the broadening general understanding of sickle cell disorder.