The Lived Experience of Corneal Transplant Recipients Following Keratoconus Throughout the Stages of Waiting, Transplantation, and Recovery
Background and Research Objectives:
Keratoconus is a degenerative corneal disease that progressively impairs vision and, in certain cases, necessitates corneal transplantation—a procedure with profound medical, emotional, and social implications. While the medical aspects of the disease and transplantation have been extensively studied, the subjective dimension of coping, including emotional and identity-related experiences, has received little scholarly attention. The present study aimed to explore the lived experiences of individuals who underwent corneal transplantation due to keratoconus, throughout the stages of waiting, surgery, and recovery, and to understand how they construct meaning around the illness, the donation, and their lives thereafter.
Theoretical Framework:
The study draws upon three main theoretical frameworks:
(1) Conceptual Metaphor Theory (Lakoff & Johnson, 1980), which views metaphors as cognitive structures through which individuals make sense of experiences of loss, change, and healing;
(2) Narrative Medicine (Charon, 2006), which emphasizes the importance of listening to patients’ stories and the role of metaphorical language in emotional processing and identity construction;
(3) The Dual Process Model of Coping with Bereavement (Rubin, 1999), which conceptualizes coping as a simultaneous movement between a functional and an emotional trajectory of mourning.
Integrating these frameworks enables a nuanced understanding of corneal transplantation as a process situated at the intersection of body, identity, and culture, bridging medical and existential dimensions.
Methodology:
The study employed an interpretative phenomenological analysis (IPA) approach to gain an in-depth understanding of participants’ subjective experiences and the meanings they ascribe to them. Data were collected through semi-structured, in-depth interviews, analyzed thematically and interpretatively, and accompanied by continuous researcher reflexivity.
Participants:
The study included fourteen corneal transplant recipients (nine men and five women), aged 26–79, all diagnosed with keratoconus and having undergone at least one corneal transplant. Participants were recruited through keratoconus support groups and social media platforms.
Main Findings:
Three central themes emerged from the analysis:
Invisible Disability and Identity Management – The disease was experienced as “invisible,” evoking feelings of loneliness, misunderstanding, and subtle stigma. Participants described an ongoing struggle between concealment and disclosure, and between social functioning and authenticity.
Encountering the Medical System and the Transplant Experience – The transplant was perceived as a complex process combining hope with a sense of loss of control, sometimes even trauma. Participants described a continuous movement between an emotional track of mourning and a functional track of rehabilitation.
Regaining Sight as Rebirth – The restoration of vision was conceptualized through metaphors of light, breath, and rebirth, reflecting experiences of renewal, belonging, and reconstructed identity.
Conclusions and Contributions:
The findings reveal corneal transplantation as a multidimensional existential process encompassing loss, hope, and identity transformation. The experience is characterized by movement between visibility and invisibility, alienation and connection, and physical and emotional rehabilitation.
Theoretically, the study expands the understanding of living with an invisible disability and of the interplay between body, identity, and culture. It offers an innovative integration of conceptual metaphor theory, narrative medicine, and the dual-process model of bereavement, demonstrating how metaphorical language serves as a mechanism for emotional processing and meaning-making.
Practically, the study underscores the necessity of emotional support as an integral part of the transplantation and rehabilitation process, and of training medical and paramedical staff in sensitivity to invisible illnesses. Recognizing that recovery extends beyond the physical domain to include psychological and cultural reconstruction of identity calls for the development of integrative therapeutic practices that foster empathic listening, emotional processing, and sustained support.
Last Updated Date : 28/01/2026
