Living with what is lost: reframing emotional life with diabetes through an integrative perspective on loss and grief.

Abstract

Over the past three decades, the concept of diabetes distress has played a central role in legitimising the emotional burdens of living with diabetes without pathologising them. Diabetes distress has helped foreground the frustrations, worries, and exhaustion associated with the ongoing demands of self-management and interactions with healthcare systems, and it has provided an important counterweight to purely biomedical models of care. However, while clinically useful, diabetes distress primarily captures emotional responses linked to burden, effort, and perceived threat. It may not fully encompass the quieter, cumulative, and more existential dimensions of emotional life that unfold across the long course of living with diabetes. In this conceptual article, we introduce loss and grief as a complementary lens for understanding these aspects of experience. Drawing on the Integrative Process Model of Loss and Grief (IPM), originally developed within bereavement research, we explore how living with diabetes involves ongoing and often ambiguous losses that affect bodily trust, identity, social participation, imagined futures, and meaning. The IPM conceptualises grief as a dynamic, integrative process unfolding across five interrelated dimensions: physical, emotional, cognitive, social, and spiritual. Rather than treating grief as a time-limited response to a discrete event, the model emphasises adaptation to cumulative and enduring forms of loss, making it particularly relevant to chronic illness. We do not propose grief as an alternative to diabetes distress. Instead, we argue that distress and grief represent overlapping but distinct perspectives on the same lived reality. Diabetes distress foregrounds the pressures and emotional load of self-management, while a grief-informed perspective highlights processes of adaptation, meaning-making, and identity renegotiation over time. Placing these perspectives together allows for a more textured understanding of emotional life with diabetes, including experiences that may not register in screening tools or routine clinical encounters.