Perceiving the Effects and Managing the Consequences of Living with a Chronic Illness : A Descriptive Study of Young Women with Systemic Lupus Erythematosus

Examined, described, and classified in the study were the experiences of young women living with systemic lupus erythematosus (SLE). The purpose of the study was to identify commonly reported themes, or leitmotifs, uncovered in in-depth interviews with affected young women. Five women between the ages of 30 and 40 participated in the study. Two of the women in the study had SLE with primary renal involvement. The other three women had a variety of musculoskeletal, central nervous system, and hematologic manifestations of SLE. Assuming a phenomenological perspective, the study investigated common patterns of responses and identifiable themes in the perceptions of young women with SLE towards the effects of living with and managing the consequences of this chronic illness. Three central motifs, or themes, emerged from the descriptive study: inherent and situational uncertainty; biographical, or pattern, disruption; and grief responses to the losses incurred by living with a chronic illness. Examination of the illness trajectory in SLE revealed the uncertainty in etiology, symptomatology, diagnosis, treatment, and prognosis exhibited by this disease. Both the symptoms of SLE, and the uncertainty which permeates the disorder, lead to biographical disruption, which is a pervasive upheaval of the patterns of daily life, personal assumptions and expectations, and resources of all manner. The financial drain caused by SLE, both in direct outlays for health care and in un- and underemployment, was a loss for both the participant and her family, and reinforced the already increasing dependency of the individual on the family and society. The chronic suffering and relentless coping reported by these women act synergestically, and result in varying degrees of grieving over the losses incurred through living with a chronic illness. Loss of mobility, spontaneity, and independence were major sources of grief for the women in the study. Reflection on, or mourning, one\u27s losses, appeared to be an act of searching for a meaning in being ill, as well as a method for restructuring views of self and the world. Drawing closer to family and friends, and a reordering of personal and family priorities in favor of obtainable goals, were two strategies used by the women interviewed in the study to cope with the consequences of SLE on their lives. By grouping these frequent patterns of responses into defining characteristics, a contextual understanding of the unique dilemmas of living with SLE surfaced. The views of the participants were analyzed in light of the literature on the psychosocial and physiological effects of SLE, as well as those studies which focus on the effects of chronic illness on the individual. The study serves as sensitization to the transpersonal experiences of young women with SLE. In this manner, implications for nursing theory and practice are identified, and further research questions generated