“I’m not a good enough mom”: Exploring the motherhood experience in women with fibromyalgia syndrome (FMS)

Abstract

Introduction

Fibromyalgia syndrome (FMS) is a common condition among adult women, with its cause and treatment still largely unknown. The prevalence of this syndrome is estimated to affect 2% of the global population, with rates ranging between 61% and 90%. FMS is characterized by chronic, widespread pain in various parts of the body. Considering that women, particularly mothers, serve as the cornerstone of families, any physical or psychological distress they experience directly impacts other family members, including spouses and children. Thus, it is crucial to examine the various aspects of life for mothers diagnosed with FMS.

Objective

Accordingly, the present study sought to explore the motherhood experience in women with FMS to identify the multifaceted impacts of this condition on their lives.

Materials and methods

This qualitative study used a descriptive phenomenological approach. It examined the lived experience of motherhood among mothers with FMS who were referred to rheumatology and fibromyalgia treatment centers in Tehran in 2024. Semi-structured interviews were used to collect data. Fifteen mothers with FMS were selected and studied through purposive sampling until data saturation was reached. Data analysis was performed using Colaizzi's seven-step method.

Results

Data analysis revealed three main themes: “living with constant pain and suffering”, “fear of not being a good enough mother”, and “adaptive living with the disease”, along with six subthemes and 31 initial categories.

Conclusions

The findings demonstrate that mothers with FMS face significant challenges in caring for their children since the onset of the disease, often being unable to manage childcare and related responsibilities independently. Consequently, these mothers require psychological and social support from their spouses and families. Moreover, providing health insurance, patient education programs, family training sessions, individual and family counseling, nursing care education, and rehabilitation to enhance self-care behaviors for coping with the disease and managing symptoms is crucial for improving patients quality of life.