Le travail de la souffrance au cours d’une situation de handicap : le cas de la drépanocytose

Abstract

ObjectiveSickle cell disease is the most common genetic disease in the world. Africa is the continent most affected by this disease, which is costly to manage for patients and their families. When not properly managed, it takes a huge toll in terms of suffering and disability on the sick person and their families. This article presents the results of a study which focused on the work of suffering, during a situation of disability, induced by this context of chronic and progressive pathology. Participants and methodOf the 12 patients solicited, 3 agreed to participate in this research. These 3 participants, whose ages ranged from 18 to 27 years, were interviewed in a hospital in Yaoundé. The data were collected via a clinical research interview recorded by a dictaphone. These anonymous data were subjected to a logical-semantic content analysis. ResultsThe analysis and the interpretation of data allowed us to observe that the work of suffering in these three participants takes on various aspects as heterogeneous as they are spectacular, made up of neurotic and manic arrangements, of conducts centered on the body or of theoretical constructions elaborated around the illness, the handicap and/or the filiation. The subjects powerless in the face of the chronicity and disabling nature of sickle cell disease are in a permanent process of searching for meaning concerning the disease and, of course, themselves as people affected by this disease. This permanent quest for meaning makes them more active against the disease and less powerless against it. ConclusionThe work of suffering, as put forward by the patients, can be thought of, therefore, as a manifestation of the global process of sexualization that phenomenological and psychoanalytical theories deal with. It opens on a redistribution of the libido, a rearrangement of the relation to the disease and the handicap. The position of narcissistic withdrawal which characterizes the situation of handicap, and the somatic attack is abandoned in favor of an effort of objectal reinvestment which the subject uses to get out of a handicapping position made of passivity, abandonment to the medical body, assignment to a stigmatizing status of sick or unfit. For the practitioner who works with patients, these results suggest various practical and therapeutic implications.