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 training and research hospital. Data was collected using both a demographic data form and a semi-structured interview form using in-depth, face-to-face interviews and analyzed by Colaizzi’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 with FMF, the patients have been had to live with the symptoms of an unnamed disease. After diagnosis, they try to adapt to FMF identity, which means unexpected recurrent attacks with physical effects, loss of social roles and functions, stigmatization and feelings of guilt. They try to continue their treatment and follow-up with the desire to maintain a healthy life and to cope with FMF.

Conclusions:

This study presents how patients experience living with an unnamed disease 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 pain during the attacks and resultant limitations. This study shows what really matter for FMF patients and how they try to compete with long-term distress.