«Digesting Crohn’s Disease»: The Journey of Young Adults since Diagnosis

Abstract

Crohn’s disease affects 2.5 million people in Europe (more than 100,000 people in France) and often occurs between the ages of 15 and 30, a period marked by self-construction. However, few studies have focused on the experience of the diagnosis during this sensitive developmental stage. This study aimed to qualitatively explore the experience of Crohn’s disease in young adults since their diagnosis. Fifteen young adults (18–35 years) diagnosed with Crohn’s disease participated in a semi-directive interview. Narrative data were subjected to a thematic analysis, and thirty percent of the interviews were double-coded. The results revealed an evolution of four main themes since diagnosis: (1) course of care, (2) illness perceptions, (3) disease management and (4) self-perception. For most participants, the onset of the disease was difficult, marked by severe symptoms requiring hospitalization, numerous medical examinations and sometimes several consultations before diagnosis. This journey was more difficult when it was associated with negative relations with the medical staff, who were sometimes perceived as unsupportive. Thus, some people described this diagnostic period as an “ordeal”, while others experienced it as a “relief” from their suffering. The announcement of the diagnosis was often a “shock”, an “upheaval” or a “downfall”, followed by phases of denial associated with a desire to maintain a “normal life” and not to be defined by the disease. Despite a difficult start, most participants grew from their experience with CD, with a sense of a personal development that was made possible by self-regulation processes that enabled them to draw on their own experience and resources to adjust to their illness. By highlighting positive possibilities for evolution, this study suggests the importance of supporting the psychological resources of young adults by proposing, at an early stage, psychological support or therapies focused on acceptance and engagement.