Kim Paul

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments.

Illness narratives from patients with colorectal cancer commonly record patterns of change in social relationships that follow the diagnosis and treatment of the condition. We believe that these changes are best explained as a process of facework, which reflects losses of face on the part of the patient, and which assists in the creation of new faces that convey new senses of identity. Facework is familiar in the work by E. Goffman (1955) and has been extensively reworked since his time. There is considerable agreement that face is a pervasive and universal constituent of all social interaction, and that it expresses the subject's view of the way he or she would like to be considered by others in interactions. Ho's concept of multiple faces negotiated dynamically according to social context is particularly useful in understanding the purpose and techniques of facework (D. Y.-F. Ho, 1994). We propose a model of face that uses dignity as the face-expression of personal attributes and acquisitions, and honor as the face-expression of systemic capabilities and attainments. This model can be used to examine individual variations in response and adaptation to colon cancer and its treatment, and it provides a useful means of teaching health care workers about the experience of illness