Aims and objectives This study aims to gain a comprehensive understanding of the illness experience of amyotrophic lateral sclerosis (ALS) patients in China and the meaning they attach to those experiences. Background ALS is a progressive and fatal neurodegenerative disorder that significantly impacts individuals and families. There is a large number of patients with ALS in China. However, little is known about how they live with ALS. Design Phenomenological qualitative research was performed among twenty people with ALS from the neurology department of a tertiary hospital in China. Colaizzi's method was used to analyse the participants' data. The Consolidated Criteria for Reporting Qualitative Research (COREQ) was used as a guideline to secure accurate and complete reporting of the study. Results We proposed three themes and eight subthemes on the illness experience of participants: (1) life countdown: 'my body was frozen' (body out of control and inward suffering); (2) family self-help: 'we kept an eye on each other' (family warmth and hardship, and supporting the supporter); and (3) reconstruction of life: 'what was the meaning of my life' (learning to accept, rebuilding self-worth, resetting the priority list and living in the moment). Conclusions In the family self-help model, patients are prompted to turn from negative mentalities to search for meaning in life actively. Healthcare providers need to attach importance to the family self-help model to alleviate the pressure on medical resources. Relevance to clinical practice Healthcare providers should encourage patients to play a supportive role in the family and provide more care support and professional care knowledge guidance to caregivers, to promote the formation of the family self-help model which might help to improve the experience of patients and families.