Do we need the concept of terminal anorexia? Credit: Louis Theroux: Talking to Anorexia/BBC

September 27, 2023   6 mins

In the summer of 1995, I watched a woman starve to death. I was 19 and L was in her mid-30s, having suffered from anorexia since the age of 15. She looked unlike any person I have seen before or since. Enormous teeth with receding gums, yellow eyes rolling, and endless layers of clothing, with nothing, it seemed, beneath them. Ancient, and not quite human.

I think of her often, mainly because I — along with others in our anorexia treatment group — was mean to her. The severity of her illness both irritated and frightened us. It felt as though she was parodying us, representing sickness with all of the person taken out. The only fierceness she exhibited was with regard to food rituals: scraping out bread rolls, then rolling crumbs between her fingers, making Slim-a-Soup, then tossing three slops down the sink before taking one sip of the rest.

L’s diagnosis was the same as ours, and in some cases, her body weight was not dramatically different. Nonetheless, she seemed to inhabit a different space entirely. Like us, she might have been afraid of gaining weight, but she was beyond fearing recovery, that half-resisted, half-desired transformation of self. For L, the very idea seemed ridiculous. Everything had been burned away, every remaining muscle, every trace of her identity, to the point where one would have had to build an entirely new person in her place.

I am sure that today L would have met the criteria for a diagnosis of terminal anorexia nervosa. In 2022, US eating disorders clinician Jennifer Gaudiani, along with Joel Yager and Alyssa Bogetz, published a paper recommending palliative care and assistance in dying for anorexia sufferers who “simply cannot continue to fight”. (Bogetz, a sufferer herself, died before the paper’s publication.) Here in the UK, new NHS guidance has been issued for patients with severe and enduring eating disorders (SEED). The “SEED pathway” includes taking the focus away from “full recovery or weight gain” and offering “palliative care interventions focused on pain and symptom management”.

Many have reacted to this news with horror. I am horrified too, yet when I think of L, it gives me pause. The final weeks of her life were appalling. She had no peace, surrounded by people who could not accept her as she had become. Three days before she died, she was still going through the pantomime of “group lunch”, when we would sit round a table and act as if we could eat like “normal people”, in preparation for “afterwards”. Rather than prioritise her comfort, we challenged her over the breadcrumbs she’d flick across the table. We each told tales if we saw her hiding food, nominally concerned at her “lying to the group”, but also resentful about how her rule-breaking might reflect badly on us. Her last days on Earth were torment; she was forced to pretend — for our sake, not hers — that she had a chance.

I am against normalising the concept of terminal, incurable anorexia. At the same time, I know, both rationally and from experience, that some long-term sufferers do become unreachable. I am sure that offering them palliative care would lead to a better, more humane death. But it’s a position that makes me feel callous and compromised. If we start to redefine particular anorexia cases — especially if we start talking about them as “terminal” — we need to consider our long history of bad attitudes towards the illness.

There have been significant changes in public and medical interpretations of anorexia over the past 40 years. Many of them have been positive. When I was first diagnosed in the mid-Eighties, three things were generally known about the “slimmer’s disease”: Lena Zavaroni had it; Karen Carpenter died of it; non-famous sufferers were selfish, vain and attention-seeking. This was the environment in which women such as L and I first received treatment. In 1986’s Hunger Strike, Susie Orbach described Eighties treatment programmes as “predicated on conflict with the patient and her very difficult set of behaviours rather than on engagement with her and her feelings”.

My first hospitalisation was in 1987. I was force-fed and, until I gained weight, denied “privileges” — getting out of bed, going to the toilet alone, receiving books and letters, having conversations, even having the light on. I was, it was made clear to me, a bad person whose “performance” of illness was inconveniencing everyone else. I was 12 at the time. Looking back, I tend to think of what happened as formative, turning what might have been a relatively short illness into a state of long-term alienation from the body. Similar things, I suspect, may have happened to L. We were shrews in need of taming.

I would never wish to see the return of such attitudes. Coercion traumatised us and for the most part, it did not work. Old-style force-feeding usually targeted sufferers who had reached a stage of severe physical decline, little attention having been paid to earlier, psychological symptoms. Today, there is greater focus on early intervention, which has far better outcomes. There are evidence-based treatment models, such as Maudsley Anorexia Nervosa Treatment for Adults (Mantra), which provides structure and long-term support. Anorexia diagnoses have increased significantly over the past 50 years, as have hospital admissions and the length of hospital stays — in contrast with decreases for other severe mental illnesses.

However, the mortality rate for anorexia remains the highest for any mental illness, at around 5.1 deaths per 1,000 person-years. Treatments are better informed and less likely to cause trauma, but have not necessarily improved for those furthest down the line. It’s here, I think, that the much-needed backlash against viewing sufferers as “wilful” may have had an unintended consequence.

There is far more compassion for anorexia sufferers now. We tend not to call them spoilt brats in need of a slap and a sandwich. But when I read works such as Hunger Strike, I cannot help feeling that the way in which we have resolved what Orbach called “the conflict” has not been through engagement so much as through retreat.

In recent years, I have noticed a drive to emphasise the (slight) genetic component to anorexia. The Guardian columnist Gaby Hinsliff has been explicit about the exculpatory potential of this, portraying it as liberation from “the idea that sickness must be someone’s fault, or that they could get well if only they chose to snap out of it”. In tandem, I have seen an increase in the portrayal of anorexia via metaphors such as that of the “Evil Friend Ana” who takes control of an innocent individual. The Beat website, for instance, includes a post on “Ana” versus “the real me” in which the sufferer describes herself as “a girl possessed”. But anorexia is not like schizophrenia; the voice you hear is your own.

I don’t think for a minute that anyone can “snap out of” anorexia. However, I feel that it is profoundly unhelpful to depict sufferers are having no agency, and to downplay the cultural, familial and political aspects. To insist, as I do, that anorexia is political is not to reduce it, but to recognise that eating, gender and the body cannot be understood outside of their social and historical context. Hatred of one’s own body, and of the act of putting food inside it, does not “just happen”, even if it seems like a bizarre invasion. I only really began to understand the factors that led to my own madness when I was in my forties, years older than L ever became.

The concept of terminal anorexia legitimises this idea of invasion, as though some bodies are simply infected with uninhabitability. But it has arisen at a time when many of the triggers of bodily alienation are more obvious than ever before. Sexual abuse; pornography; the diet and cosmetic surgery industries; the idealisation of underweight bodies; the objectification of pubescent girls; the belief that sexualised bodies represent inner identities. None of these is trivial. They might not be the things you are actually thinking about when you have anorexia, but I simply do not believe that anyone is born pre-programmed to reject their own body. It is a learned thought pattern.

To be clear, I am not proposing that anorexia, for all its symbolic potential, constitutes some well-thought-out rebellion against an oppressive society. As anyone who has had anorexia knows, it is not intellectually interesting as an experience; it is, for the most part, boring. You might appear unlike your growing, developing peers, but when you enter group therapy, you find that your symptoms match those of everyone else. You are in no way original.

I used to think there would be more dignity and less shame in viewing my own anorexia as mysterious and inexplicable. Thinking this way made recovery even more difficult: how can you recover, if none of it is really in your hands? “Terminal anorexia” seems to me the logical end point of denying the moral, political, and relational aspects of the disorder. It might make it easier to forgive the dying patient — to not hate and punish them — but it also denies society’s complicity. And once we say that anorexia has a terminal manifestation, can we ever unsay it? Once it becomes embedded in our understanding of what anorexia is, don’t we risk accepting that women such as L were never for this world?

And yet, in refusing to accept a terminal diagnosis, what do I ask of sufferers such as her? For them to hang on in there and try not to have a seizure in the occupational therapy room until the entire world gets fixed? In rejecting both the treatments of the past and the proposals of the present, I might seem to be wanting the worst of both worlds: neither forcing sufferers to live nor helping them to die. I know that a third option, helping them to live, is not always possible.

Nonetheless, I think we can distinguish between treatment programmes that focus on maintaining comfort rather than promoting weight gain, and ones that actually use words such as “terminal” and “palliative”. This might seem a subtle difference, but it matters. There has to be a middle ground, whereby showing compassion does not require us to abandon the principle that no one should be dying of anorexia at all. When L was dying, we treated her badly. To us, she was all illness, no person. I wish we had been better, but acceptance of the dying person should not come with acceptance of anorexia as a terminal disorder. It isn’t — or, if it is, it is only because we have made it so.

Victoria Smith is a writer and creator of the Glosswitch newsletter.