“A rough and swirling sea”: Voicing Amyotrophic Lateral Sclerosis through discourse analysis

Amyotrophic Lateral Sclerosis (ALS) is a rare, incurable neurodegenerative disease that leads to death within 5 years of diagnosis and greatly impacts patients’ and caregivers’ quality of life (QoL). Typically leading to death within 5 years, ALS underscores the need for emotional and psychological support. This study analyzes 118 testimonies from patients (n = 67), informal caregivers (n = 41), and formal caregivers (n = 10), with a gender-balanced sample (n = 67 women), using discourse analysis. Narratives reveal a complex emotional landscape of suffering and resilience, showing ALS as a disruptive force that prompts reevaluation of roles and life stories. Shared support is crucial within families and social settings. Many testimonies express a desire to raise awareness and fund research. Understanding ALS through these stories offers insights into the psychological, emotional, cultural, and social challenges, essential for developing tailored interventions to support psychological well-being.