While producing this article, I also realised that the ‘terminal anorexia’ debate is having a significant emotional impact on clinicians who work with AN patients. For example, some feel helpless and question what their roles are. Do they save patients who they genuinely believe can eventually live meaningful lives? Do they let their patients die because it seems that hope is gone? Do they get stuck fighting with colleagues in the muddy in-between grounds, waiting indefinitely for a consensus that ends the stalemate?

The possibility that AN can be terminal, even if it is caveated with messages that this is rare, is extremely disheartening to sufferers who are already losing hope. Their pessimistic belief systems and cognitive biases (especially labelling, all-or-nothing thinking, overgeneralising, selective attention, and arbitrary inference), which are often strongly reinforced by the way that they have been treated/discussed/labelled by clinicians for years, mean that many will assume they have death sentences and can never get better.

I appreciate that some AN sufferers would feel relief if they were diagnosed with ‘terminal anorexia’. It can be a comforting and validating diagnosis. They may self-identify with the term, and finally feel understood by others. I have at times struggled not to relate to the term. In early 2022, I probably would have wanted to be diagnosed with ‘terminal anorexia’, and therefore given permission to die (or at least be relieved by the prospect of it). However, although I accept that I will never be ‘cured’ in the traditional sense, I now hope that I can have a purpose that makes life worth living, even if anorexia is always in my life—which is fundamentally different to it being my life (and death). I did not have this hope in early 2022 when my BMI was much lower. Notably, I did have capacity at the time—it is possible to have capacity and be confused/conflicted at the same time.

I have met AN sufferers in their 50s and 60s, with far worse experiences than mine and countless hospital admissions, who are living meaningful and purposeful lives. They are certainly not just ‘existing’ or waiting to die, though they may feel this way at times. Even the most ill and longstanding AN sufferers do not have to die or just ‘survive’ reluctantly. Opposing messages, which suggest that this is not possible, are readily accepted by individuals who are vulnerable and conflicted.

Unfortunately, it can take years for sufferers to realise that life—true living—is both possible and worthwhile. I have only just started this journey of discovery, and I expect that there will be many times when the AN bully-friend befriends me again, as there seems to be nothing else to fall back on. Until other sufferers can also start this journey, they need clinicians, and their loved ones if possible (who are just as much the victims of hope-crushing AN), to hold the hope for them.

Sufferers do not have to be controlled (or in this case killed) by their AN. This is because they have identities—often suppressed for many years—that go far beyond their EDs. They should not have to feel that defeating their ED requires defeating their whole selves. And they should always have the hope and knowledge—often hidden/silent—that they can and deserve to live (not just ‘exist’ or wait to die).

Labels such as ‘treatment-resistant’,Footnote 2 ‘treatment-refractory’, and now ‘terminal anorexia’, can destroy hope and identity for those who receive them—even if these labels have not been formally ascribed or approved by treating professionals. Additionally, they can cause iatrogenic harm by inadvertently pressurising the labelled sufferer to fulfil the new ‘role’ (a ‘dying role’) that has been permanently assigned to them. A terminal diagnosis can implicitly instruct ED patients to wait for their certain deaths, rather than allow them to have the continued choice and hope of living.

Moreover, conflicting and inconsistent messages from different (or even the same) professionals—e.g., “You are more than your anorexia and can live a meaningful life,” versus, “You have no control over your life and anorexia,”—are extremely confusing for sufferers who are already ambivalent. It may undermine their trust in all professionals, thereby reinforcing the belief that only the AN can be relied upon.

Furthermore, the prolonged anxiety, uncertainty, and even unjustified guilt caused to a sufferer who learns about another patient’s ‘terminal anorexia’ diagnosis would be very distressing. Expecting someone they know—perhaps a fellow patient and/or a friend with shared experiences—to die from the same condition, yet not knowing for sure if or when this will happen, could be unbearable. It may even encourage the traumatised sufferer to cope by seeking/accepting the same fate as the patient diagnosed with ‘terminal anorexia’.

Hope is also crucial for the sufferer’s family, friends, and carers. They are also the victims of AN’s demoralising power. They may become so dejected by their loved one’s ‘terminal anorexia’ diagnosis, or just the suggestion/consideration of one, that they lose hope and compassionately give up on trying to fight to keep their loved one alive. They probably would have spent many years dedicated to this purpose.

For AN sufferers, having (or just perceiving that) those closest to them—probably their strongest ‘protective factors’ against death—are losing hope may in some cases be devastating. It may be ‘the final straw’, leaving them with no more reasons to stay alive—‘I might as well die now.’