‘Terminal anorexia’: a lived experience perspective

Having suffered from longstanding anorexia nervosa (AN) for more than a decade, and after meeting many patients who have also been labelled as ‘treatment-resistant’, ‘treatment-refractory’, or similar terms, I feel a strong responsibility to express my deep fears and sadness about the more harmful new label of ‘terminal anorexia’. This article is based on a reflective and private email that I emotionally wrote in Autumn 2022, soon after reading a thought-provoking paper (Guarda et al. in J Eat Disord 10:79, 2022) about the new term. When I wrote the email, I had not read the Gaudiani et al. (J Eat Disord 10:23, 2022) paper that proposed clinical characteristics for the new diagnosis. Hence, my email was not, and this article is not, a response to Gaudiani et al. (2022). Challenging the criteria that they proposed is beyond the scope of this article, which is just a lived experience reaction to the concept of ‘terminal anorexia’ (regardless of who created it and who tries to define it).