“You Just Have to Live With It”

Abstract

Research has shown that living with sickle cell disease (SCD) can be a considerable challenge. Unfortunately, although it is Jamaica’s most common genetic disorder, to date, no qualitative research has been conducted on Jamaicans’ experiences of SCD. We conducted thematic analysis on transcripts of in-depth semistructured interviews with 30 patients and found two interlinked themes bound up in life with SCD: loss and control. Faced with important losses, respondents used cognitive and behavioral coping strategies to reestablish control over their response to SCD, others’ responses to SCD, and SCD’s physical manifestations. Although the adaptive nature of some of these strategies is debatable, many facilitate management of the illness. Health care practitioners should encourage positive coping strategies and have nonjudgmental discussions with patients about (potentially) negative ones. They should also share information with nonspecialist doctors and nurses to reduce stigmatization around the illness. More exploration of this underresearched topic is needed.