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.
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