[Experience of fibromyalgia]

Area of Science:

• Qualitative Health Research
• Sociology of Health
• Patient Experience Studies

Background:

• Fibromyalgia is a complex chronic illness impacting daily life.
• Understanding the lived experience of fibromyalgia is essential for effective care.
• Current healthcare models may not fully address the complexities of chronic illness management.

Purpose of the Study:

• To explore the lived experience of individuals with fibromyalgia.
• To analyze the challenges faced by patients in their healthcare journey.
• To reflect on and question the direction of professional care for fibromyalgia.

Main Methods:

• Focused ethnography utilizing participant observation.
• In-depth interviews with three individuals diagnosed with fibromyalgia.
• Analysis of narrative data through five distinct units.

Main Results:

• Patients experience significant stress during the diagnostic waiting period and a major life disruption upon diagnosis.
• Challenges include difficulties in social interactions, conflicts with the healthcare system, and limited nursing support.
• Despite pain, patients strive to remain active, adhere to treatments, and seek support from associations, focusing on the present.

Conclusions:

• Diagnosis provides a name for distress but requires more information to manage uncertainty and adapt.
• Patients' desire for activity is often hindered by pain; they live in the present with limited future planning.
• Narrative approaches and individualized care are vital for nurses to support patients with chronic, complex conditions.