Narration, chronicity and reconstruction of meaning in the “Casa Giobbe” community
Project work of the 17th edition of the Master’s program in Applied Narrative Medicine by Marco Peretti and Valeria Metoldo
Chronic illness never coincides solely with a diagnosis. Rather, it is an event that interrupts the continuity of existence, redefines the boundaries of identity, and forces individuals to reorganize their place in the world. This is particularly evident in people living with HIV, whose experience lies within a complex space where clinical dimensions, social stigma, and biographical fragility deeply intertwine. The project work “Raccontarsi per ritrovarsi” (“Narrating oneself to rediscover oneself”) arises precisely within this space, with the aim of exploring how people narrate illness and, above all, how, through storytelling, they attempt to make sense of it.
Within the Casa Giobbe community, which for years has welcomed people with HIV often marked by marginalization and social hardship, narration takes on a value that goes beyond mere testimony. It becomes a working tool, a care device, a space where experience can be named, shared, and gradually reworked. In this sense, narrative medicine is not an accessory addition to care practice, but a concrete way of accessing the deepest dimension of illness—what Arthur Kleinman would define as illness, the lived and subjective experience of suffering.
The project collected thirty-eight narratives from three different groups: resident guests, former guests, and community staff. This plurality of perspectives makes it possible to observe illness not as an isolated event, but as a relational and temporal process that evolves over time and is also shaped through the gaze of others. The stories of residents strongly convey the moment of diagnosis as a biographical rupture. The words used are often essential, direct, and unmediated: paralysis, fear, loss of orientation. The future appears suspended, sometimes nonexistent. In these narratives emerges what Arthur Frank describes as a chaos narrative, a form of storytelling in which events lack order and life seems to lose coherence and direction.
This initial phase is marked by deep destabilization. The illness is not yet integrated but invades every space of the narrative, occupying the center of identity. The “before” and “after” appear sharply divided, with no apparent possibility of recomposition. However, it is equally clear that this condition is not static. In the narratives of former guests, a significant transformation can be observed: the story changes shape, becoming more linear, more oriented, and more capable of including illness within a broader life story. The words speak of organizing daily life, small projects, and a more stable relationship with the present. This marks the transition toward what Frank defines as quest narratives, in which illness becomes a search for meaning—an opportunity, not always chosen but progressively accepted, for transformation.
This evolution suggests that the narrative of illness follows a recognizable trajectory. The stories reveal a recurring temporal structure: an initial phase of disorientation, a biographical crisis, a gradual search for meaning, and finally a re-elaboration that allows the experience to be reintegrated into one’s life story. In terms of biographical disruption, there is a shift from a radical fracture—where illness completely redefines identity—to a more nuanced condition, in which it is integrated as part of one’s existence.
A particularly relevant element concerns the emotional dimension. The narratives clearly show how the language of illness is deeply rooted in emotions. Words such as fear, loneliness, and anger dominate the initial phases, but are gradually accompanied by terms related to trust, hope, and the possibility of change. This is not a substitution, but a coexistence. Negative emotions do not disappear; rather, they are renegotiated within a new balance. This finding aligns with the idea that the experience of chronic illness is characterized by a constant tension between loss and adaptation—between what is no longer and what can still be.
In this process, language plays a fundamental role. People frequently use metaphors to describe their condition: illness as a fall, a struggle, a journey, or an opportunity for rebirth. These images are not mere rhetorical embellishments but cognitive tools through which experience becomes understandable and shareable. Speaking of illness as a journey, for example, places it within a temporal dimension, allowing the imagination of stages, changes, and possibilities for movement. Transforming illness into a journey shifts it from a point of existential defeat into a difficult but possible path—perhaps slower and uphill—that still allows one to “live,” rather than “die” every day.
If individual narration is the place where meaning is constructed, the community represents the context in which this process becomes possible. The stories strongly highlight the role of Casa Giobbe not only as a care facility but also as a relational space. The community is described as a place of protection, but above all as an environment where people can be listened to, recognized, and accompanied. In many accounts, there is a transformation in how residence in the community is perceived. Initially experienced as a sign of failure or loss of autonomy, it is gradually reinterpreted as an opportunity. The community becomes a place where it is possible to live, build relationships, and redefine one’s identity. This shift is particularly significant because it challenges a model of care focused solely on full recovery of autonomy, suggesting instead that there are different, yet equally valid, ways of living with chronic illness.
The narratives of staff members add a further layer of complexity. Through their perspective, both growth trajectories and persistent fragilities emerge. In some cases, an intense emotional dimension surfaces, characterized by frustration, helplessness, and a sense of injustice, especially when faced with late diagnoses or life stories marked by exclusion and missed opportunities for care. This highlights an often-overlooked aspect: healthcare professionals themselves are bearers of narratives and need spaces in which to process them.
Overall, the collected stories portray illness as a dynamic experience that extends beyond the clinical dimension and unfolds over time through a continuous process of reinterpretation. Narration emerges as a tool capable of accompanying this process, allowing individuals to integrate illness into their identity and construct new forms of meaning. In this sense, narrative medicine does not replace biomedical medicine but serves as its necessary complement.
“Raccontarsi per ritrovarsi” is not only the title of the project but also an effective synthesis of its deeper meaning. The narratives show that, even in conditions of extreme fragility, it is possible to transform the experience of illness into a “life story.” The goal is not to eliminate suffering, but to make it speakable, shareable, and integrable. Care, therefore, does not coincide solely with treating the disease, but with creating the conditions in which people can tell their stories and, through that storytelling, rediscover a possible sense of their existence