[Stories about life with amyotrophic lateral sclerosis]

Amyotrophic lateral sclerosis leads to severe paresis and early death. Nevertheless, many patients claim to have a good quality of life. Pathographies, i.e. biographical books describing disease experiences, may contribute to our understanding of the impact of severe disease on quality of life.

We discuss how living with amyotrophic sclerosis is depicted in three pathographies. These are interpreted in the light of literature about pathographies and our own clinical and theoretical experience with the disease.

A common theme for the books is that the patient's identity gradually becomes less dependent on the body. Criticism of health care and welfare systems and fighting for care are important in some narratives, while others barely mention these subjects. The authors delineate different strategies for coping with loss of body functions and dependence on care and technical aid, but they all emphasize that meaningful lives are led despite of major disabilities.

The pathographies challenge our knowledge and attitudes to quality of life and dignity with severe disease, and shed light on experiences that are under-represented in medical literature. Narratives in the form of pathographies may provide valuable insight to health professionals, patients and the public.