Reality of living with familial mediterranean fever identity”: A phenomenological study

Abstract

Aims:This phenomenological study was carried out to explore and describe FMF patients’(n=15) life experiences and coping behaviors.Methods:This study was conducted in the rheumatology outpatient clinic of a trainingand research hospital. Data was collected using both a demographic data form and asemi-structured interview form using in-depth, face-to-face interviews and analyzed byColaizzi’s phenomenological data analysis method.Results:Data analysis brought out three categories; (1) Living with an unnamed disease,(2) Living with FMF identity, (3) Coping with FMF symptoms. Until being diagnosed withFMF, the patients have been had to live with the symptoms of an unnamed disease. Afterdiagnosis, they try to adapt to FMF identity, which means unexpected recurrent attackswith physical effects, loss of social roles and functions, stigmatization and feelings ofguilt. They try to continue their treatment and follow-up with the desire to maintain ahealthy life and to cope with FMF.Conclusions:This study presents how patients experience living with an unnameddisease before being diagnosed, living with FMF identity and coping with FMF symptoms.Findings demonstrated that most of the troubles patients lived were related to the painduring the attacks and resultant limitations. This study shows what really matter for FMFpatients and how they try to compete with long-term distress.