‘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). Before learning about ‘terminal anorexia’ in 2022, I assumed that ‘unconditional positive regard’ included mental health professionals’ unconditional hope for their patients’ ability to live meaningful lives, irrespective of how severe or chronic their patients’ conditions were. Therefore, I was very disheartened when the label ‘terminal anorexia’ was circulated by professionals. Research is not just read, seen, and heard about by the professionals who promote it. Vulnerable and conflicted eating disorder (ED) sufferers, and their families, can be victims of theoretical academic discourse that has real-world, life-or-death implications. The purpose of my article is not to suppress the arbitrary new term, which is sadly already commonly used in clinical practice and amongst very young ED sufferers, despite it having no agreed definition. I intend to outline some of the reasons why I believe that the term (not its hypothesised criteria, which are beyond the scope of my article) is harming ED sufferers, so that these harms can be addressed before it is too late. I have grouped these reasons into six key themes that inevitably overlap and cannot be perfectly separated. They are: [1] Hope and identity destruction; [2] Avoidance and collusion; [3] Self-diagnosis and misdiagnosis; [4] Comparisons; [5] Dangerous precedents; [6] Current and future treatments.