Lived Experience of Illness and Treatment in Case of Eating Disorders

The importance and value of involving people with lived experience of mental health difficulties across all areas of mental health research, policy, and practice has been strongly advocated in recent years. Early research into the genetics and brain-based underpinnings of anorexia nervosa was initially supported by individuals and foundations informed by lived experience. More recently, evidence-based codesign and other participatory approaches have been used to design services and treatment. Lived experience of eating disorders has been used in the form of narrative recovery stories and in peer support worker and mentor roles. Throughout this chapter, many of the benefits of lived experience in research and treatment are described, such as challenging stigma and providing insights. However, the challenges and controversies are also highlighted where needed. While research into this area has been limited, new work is rapidly emerging. Where possible, systematic reviews and randomized controlled trials which consider both patient and service outcomes, as well as the impact on lived experience practitioners, are prioritized. These approaches might lead to the development of more personalized and tailored treatments, particularly across more diverse groups of people experiencing and recovering from eating disorders.