Personal Accounts of Endometriosis: Online Narratives of Lives Shaped by Pain

PERSONAL ACCOUNTS OF ENDOMETRIOSIS: ONLINE NARRATIVES OF LIVES SHAPED BY PAIN. Veronique Anne Sabine Griffith Endometriosis is a chronic disease characterized by the presence of endometrial implants outside the endometrial cavity. Because of its chronicity and lack of cure, the experience of endometriosis goes well beyond physical symptoms and has a significant impact on the psychosocial aspects of affected patients lives. Given this extensive impact on the patients quality of life, it is surprising how little attention has been given by the medical profession to exploring the mechanisms used by endometriosis patients to cope with this disease. One such important mechanism is the use of online support groups. This qualitative study focuses on the use of online support groups by patients afflicted with endometriosis. Two online groups were accessed, and a total of 28 posts from 27 patients were analyzed in detail in an attempt to understand how the patients used the groups and what matters they discussed. The following four major themes emerged from the analysis: (1) the quest to legitimize the endometriosis illness experience and the search for support, (2) the search for medical information, (3) descriptions of the effect the disease has on the patients lives (known as the illness experience), and (4) efforts of group members to interact effectively with non-group members not suffering from the disease and therefore lacking this unique illness experience. The results indicate that the patients were often dissatisfied with the treatment they had received from medical professionals who generally focused on the physical manifestations of the disease. The groups communications reflected a broader understanding of the illness experience that was frequently ignored by the medical profession. These results lead to the notion, deserving of further study, that the endometriosis peer groups may be an important adjunctive measure in the armamentarium of endometriosis treatment. In addition, the findings suggest that the training of physicians in the management of patients with endometriosis needs to be re-conceptualized to emphasize treatment of both the disease and its psychosocial impact on the patients