Background: CTCL patients face unique challenges due to visible and progressive symptoms. The aim of this study was to understand how patients navigate the psychosocial impact of visible disease manifestations and maintain their sense of identity and social relationships.
Methods: We conducted in-depth interviews using an internally standardized questionnaire with (N=12) CTCL patients at a comprehensive cancer center. Interviews were transcribed verbatim and analyzed through thematic analysis using MAXQDA software to identify recurring patterns in symptom management strategies, identity preservation, and social adaptation as patients navigated visible manifestations of their disease. The study was approved by the Emory University institutional review board (IRB 00008367).
Results: Analysis revealed three primary themes: (1) selective symptom disclosure - strategic concealment to maintain social relationships; (2) identity management – the impact of changing physical capabilities on self-perception; and (3) role reconstruction - adapting to new limitations while maintaining dignity.
Conclusions: CTCL patients develop complex adaptive strategies that often result in an unintended cycle of isolation. While these strategies help preserve dignity and manage visible symptoms, they ultimately compromise patients' access to social support and reinforce patterns of withdrawal. This paradox highlights the profound psychosocial impact of living with visible manifestations of CTCL. Healthcare systems should implement comprehensive psychosocial support services that respect patients' need for dignity while facilitating meaningful social connections.
