Uncovering the imprints of chronic disease on patients’ lives and self-perceptions

Abstract

Rheumatoid arthritis (RA) patients face psychological hardship due to physical discomfort, disabilities, and anxieties. Previous research indicated a bidirectional relationship and patient desire for emotional support from providers. This study examined lesser-understood RA experiences across the psychological and social contexts in relation to self-perception through the patients’ expression of their struggles with these burdens. We conducted four semistructured focus groups and eleven interviews (total n = 31). A codebook was developed and refined through iterative transcript coding via NVivo-12. Four emerging themes were identified by inductive, thematic analysis: (1) the patients’ healthy appearances were a myth, with subthemes revealing a conflict between an inclination to hide the disease and a desire for validation, while feeling embarrassed by symptom manifestations and disappointment at withdrawal from social interactions; (2) an identity crisis due to diminished functionality, autonomy, and sense of self; (3) RA constantly occupied the mind, as its unpredictability dictated daily schedules and altered plans; and (4) the disease’s chronic nature influenced personal outlook to worry about or accept the uncertainty. Even with effective treatment, the invisibility of the disease, the fear and anticipation of flare-ups, and identity clashes caused emotional distress. The insights offer a different perspective on personalized medicine, complementing clinical treatments based on genetic or biomarker profile. For patient-centered holistic care, education is needed to prompt both patients and providers to discuss psychological issues for more customized, integrated interventions. The findings can help inform healthcare teams and families in recognizing and supporting these physical-psychological intertwined experiences, thereby ameliorating patients’ wellbeing.