ABSTRACT
Background
Rheumatoid arthritis affects young women during critical life-course stages, requiring ongoing adaptation to illness-related uncertainty while managing social roles and expectations. Women in their 20s to 40s face distinctive challenges related to illness disclosure, stigma and life-course tasks, particularly around childbirth and caregiving roles.
Objective
This qualitative study explored the illness experiences of women with rheumatoid arthritis in their 20s to 40s and examined how they construct everyday normality amid uncertainty and life-course tasks.
Design
Colaizzi’s descriptive phenomenological method.
Setting and Participants
Semi-structured in-depth interviews were conducted with 20 women aged 20–49 years who met the 2010 American College of Rheumatology/European Alliance of Associations for Rheumatology classification criteria. The mean interview duration was 58 min. Colaizzi’s seven-step phenomenological analysis was applied; coding consistency was checked (Cohen’s kappa = 0.90).
Results
From 529 meaning units, 42 subthemes, 12 core themes and 5 theme clusters were derived, with an overarching theme of ‘Constructing normality between uncertainty and life-course tasks’. Participants employed differentiated disclosure strategies, transitioning from concealment to selective disclosure around childbirth. Two novel concepts were identified: ‘forced disclosure’, wherein illness was unintentionally exposed due to structural factors, and ‘legitimised vulnerability’, wherein social approval for help-seeking was obtained through the maternal role.
Discussion
Young Korean women with rheumatoid arthritis reported experiencing patterns of diagnostic delay, shifts in disclosure strategies with childbirth as the turning point, and maternal role conflict. Participants did not experience disclosure as a purely individual decision. Instead, they feared that disclosure would lead to being devalued as ‘a sick person’ or ‘a weak person’, which shaped their disclosure strategies.
Conclusions
Childbirth serves as a turning point in illness disclosure strategies, highlighting the need for nursing interventions tailored to life-course tasks.
Lived Experience or Public Contribution
A registered nurse who is herself living with rheumatoid arthritis contributed to developing and refining the interview questions during the study design phase. She also provided limited input during analysis by helping to confirm the meaning of some participant statements, enhancing the study’s credibility and relevance to the experiences of young women with RA.