Background Anorexia nervosa is a severe psychiatric disorder characterised by starvation and malnutrition. In severe and enduring anorexia nervosa, individuals may be unable to overcome persistent ruminations about their weight, food intake and body shape, so interventions may be required that focus on quality of life rather than on achieving full recovery.

Aim To identify which factors may affect the quality of life of women with severe and enduring anorexia.

Method Constructivist grounded theory was used and semi-structured interviews were conducted with eight women receiving inpatient care for severe and enduring anorexia in a severe eating disorder unit in the Netherlands. Data collection and analysis occurred simultaneously, and theoretical categories with associated properties emerged from this process.

Findings Four theoretical categories were identified: ‘suffering, but not in silence’; ‘one step forward, one step backwards’; ‘connective tissue’; and ‘best friend, best enemy’. The findings emphasised the need to recognise suffering as a continual affect experienced by people with severe and enduring anorexia, as well as the negative effects that the condition has on people’s quality of life, largely due to its inextricable link with their identity. In addition, it was identified that severe and enduring anorexia can significantly affect an individual’s family and friends, and that there is a need for eating disorder services to use an assertive outreach approach.

Conclusion The quality of life of people with severe and enduring anorexia could be enhanced by: education for nurses, patients and families; assertive outreach interventions; the use of therapy dogs; and a structured daily routine that includes social and family activities.