Abstract

Illness, as a description of the human experience of being sick, involves more than the physiological or pathological dysfunction of the body. The prevailing view of illness, with its emphasis in biological understanding, precludes investigation of other aspects of illness and disease; with potentially detrimental consequences for the patient. Acknowledging the need to expand the current view of illness, this study investigated and described the patient's experience of being ill with Lupus Erythematosus. In addition, the present work sought to investigate the psychological phenomena present in this disease and its relationship to social, medical and phenomenological variables. ;The method used in this study included phenomenological interviews and written descriptions of the patients experience of being ill with Lupus. Psychological testing , and medical and behavioral self-reports also were incorporated in this study. ;The participants were 39 Lupus patients ages 25 to 76, who were solicited through the East Tennessee Lupus Foundation. Results of the interviews revealed five major existential themes: Isolation/Invisibility, Constricted Existence, Vulnerability, Transformation and Resoluteness. The first theme, Isolation/Invisibility, pertained to the experience of isolation and estrangement from other people and an awareness that others "don't understand". Constricted Existence referred to the losses and limitations experienced by Lupus patients. Vulnerability was the most frequently mentioned theme; it described the awareness of physical and mental symptoms and the feeling of helplessness and loss of control. Transformation was the experience of changes in moods, personality and life-style. Finally, Resoluteness referred to the attitude of fighting and struggling with the disease. ;Other findings indicate a high prevalence of psychopathology among Lupus patients, with neurotic symptoms present in 74% of participants, and as many as 33% also reporting psychotic symptoms. Awareness of isolation, the number of symptoms reported, limited physical activity and lack of employment had significant effect on levels of neuroticism. The results of the study argued for a need to expand current views of illness and suggested possible avenues of intervention