My illness, myself: on the secrecy of shame

Research has shown that the experience of being diagnosed with cancer has a negative psychosocial impact on patients and their families, often resulting in distress, and numerous practical and relationship challenges. Men with prostate cancer and their partners face special challenges. A range of symptoms that result from monitoring patients and side effects of treatment may reverse the quality of life and intimate relations between patient and partner. However, patients often are reluctant to bring up their distress about the symptoms, leading to an underestimation and reduction in optimal symptom control. As a result of their illness, chronically-ill male patients often experience elevated levels of stress, daily activities are often limited, they are frustrated about the unpredictable course of the illness and its symptoms, and are immersed in fears about their present and future social identity. Most of them avoid disclosure about their illness--when and where possible--and place great importance on sustaining a normal life. Factors related to limiting disclosure include men's low perceived need for support, fear of stigmatization, the need to minimize the threat of illness to aid coping, practical necessities in the workplace, and the desire to avoid burdening others. This paper contributes to an understanding of the complex issues of disclosure related to prostate cancer patients and raises issues about how best to be helpful, within their cultural and social framework. It also deals with feelings of shame, guilt and inadequacy as the cause--or consequence--of concealing the illness. The oral presentation will use a clinical example of secrecy and the subsequent conflicts and quandaries of a religious person diagnosed with advanced prostate cancer. Dilemmas of shame, disclosure and guilt will be the focus of the discussion.