Hope Virgo’s description of her descent into anorexia is so harrowing and filled with danger that meeting her in real life – in the south London flat she shares with her fiance – is like meeting the personification of triumph or optimism. “In the media, you see the same stories, the same distressed, emaciated person; you hear of people dying,” Virgo says. “We need to hear those stories, but at the same time, I really believe that a full recovery is possible. I think we lose sight of that glimmer of hope.”
In her book Stand Tall Little Girl, she gives the figures to back this up: 40% of people who have had an eating disorder never think about it again; 15% are unable to fight it off and are stuck in it; and 45% of people find a way to live with it, using coping mechanisms. Virgo’s pioneering work has an overarching purpose: to say, in her words and through her actions, that recovery is possible. It’s a rescue mission launched from regular life into a world of crisis – in which no one is seen as irrecoverable.
She began her activism with the campaign Dump the Scales – a challenge to the idea that treatment for eating-disorder patients can be tied to their BMI. “I was trying to make sure that people with eating disorders could get treatment on the NHS regardless of what their BMI is. And now I’m trying to take it further, to get people to understand that not all eating disorders are visible. Regardless of someone’s size or their shape, the question is what their eating patterns are, what their food behaviours are like.”
Dump the Scales started as a practical struggle: fundraising and campaigning on the principle that the constellation of eating disorders – anorexia nervosa, bulimia nervosa, binge-eating disorder and other specified feeding or eating disorders, responsible for more loss of life than any other mental health condition – require a much more complex clinical response. At the moment, the Nice (National Institute for Health and Care Excellence) guidelines on treatment specify that BMI should not be the only diagnostic measure used, but many people find it hard to access treatment if they are not technically underweight. “In fact,” Virgo says, “only 6% of people with an eating disorder are actually underweight.”
Over time, Virgo’s thinking developed to take on a more cultural challenge, and last year she gave up work to campaign full time. “There’s something fundamentally wrong with the way eating disorders are treated. We get fixated on that teenage white skinny girl, but that’s such a small part of the story.” When the disorder is seen as a diet gone wrong, a choice, something you can grow out of, it becomes trivialised. That stigma prevents people seeking help and acts as a block on the deeper understanding that is urgently needed to improve outcomes.
There is also work to be done on the way we think about food and body image as a society. “We have normalised eating disorder culture,” Virgo says, “and whilst dieting doesn’t necessarily cause an eating disorder, I do think it has a role to play in making us question our bodies, our relationships with food.
“Last night, I did a session for parents, and I just wanted them to think about the fact that we’re all so embedded in eating-disorder culture. There are a lot of people who have a really unhealthy relationship with food and exercise, and we just accept that it’s fine. That normalises it. I have to keep saying: ‘It’s not fine.’ Particularly in the pandemic, everyone was talking about how much weight they were going to lose. You could always be thinner. But that won’t make you happy.”
Clinical preconceptions are in a feedback loop with a culture that both valorises thinness and sees it as the sine qua non of disordered eating. Anyone with an eating disorder who isn’t underweight is discredited by this fundamental misunderstanding of what the illness is, which makes it very hard to seek help – particularly if, when you try, you are not taken seriously. It is incredibly rare for anyone who isn’t underweight to talk openly about anorexia, understandably. When the plus-size model Tess Holliday revealed earlier this year that she was anorexic and in recovery, she faced an explosion of opinions that she summarised at the time: “I’ve had a lot of messages from folks that are anorexic that are livid and angry because they feel like I’m lying.” If clinicians also struggle to believe in a mental illness that they can’t see on the scales, it creates a wall of silence. “I was just so fed up with the way eating disorders were treated, the real lack of understanding around them,” Virgo says. “I felt I really had to do something.”
It was in November 2007, at the age of 17, that Virgo herself was admitted to hospital because her BMI had dropped far enough that the doctors considered her life was in danger. Six months before that, she had started treatment with child and adolescent mental health services for her eating disorder, which, to her mind, was when the problems started. Since the age of 13, she had been rigidly controlling her calorie intake and exercising obsessively. She once ran a half-marathon having eaten nothing for four days. She avoided her meals at school by giving away her food, and those at home in the melee of being one of five children.
But it was only when professionals got involved, she feels, that she started having to hide her behaviour, which unleashed a dark inventiveness. Before every weigh-in, she would down water. She would vomit after every meal, counting the food out. She would exercise excessively. The sheer pain screams from her description, and she finds it cathartic now to write and talk about it. “I think I romanticised being unwell because it served a purpose at the time. But, describing it, I can see that I was never happy. So that helps, because otherwise when you have a bad day, you always think: ‘Maybe if I went back to that behaviour, that might work.’”
Virgo is slightly chary of tracing her anorexia back to a direct cause. “I really struggled with being the middle child. I’ve always felt quite different to everyone else in my family. They just got on with stuff differently – accepted that we had conflict at home, and that things were really difficult at points. But I was fixated on trying to resolve all of these issues and fix everything.”
Virgo describes a therapist she saw when she was nine, who would try to get her to draw her feelings, then get cross with her for poor draughtsmanship. By 13, she had found her own solution. “Anorexia got me. It was such an amazing coping mechanism. It would start telling me to calorie count or to ruminate over food and it numbed a lot of the stuff that I didn’t want to feel.”
Virgo was then sexually abused by an older man, which had a profound effect. “I felt like there was something categorically wrong with me, that I’d done something wrong and it was my fault. I think, after that happened, I carried a lot of that with me, and every time somebody didn’t respond in a way that I thought they were going to, it meant that I wasn’t lovable.”
The events of these years also baked in a pattern of thinking – that weight loss meant approval, and that there was nothing else intrinsic in her to approve of. Virgo is getting married this August, and describes, ruefully, how the voices still battle in her head. “There’s always part of you thinking, ‘If I did lose weight, maybe I’d look better on the day, and everyone else will have a better day.’ But that is not the truth. They’ll have a better day if I’m eating and I’m happy.”
As the illness progressed, she found allies at school and online, where there were huge communities swapping tips on avoiding food and tricking the people around you.
Yet she is keen to emphasise that it was no one thing – and certainly no one feature of modern life or the internet – that caused the anorexia. “It’s 50% down to your genetics, and I did often wonder if there was a genetic predisposition even before I saw that research.” Virgo’s grandmother suffered with disordered eating all her life, and Virgo tells an absolutely tragic story of going to visit her in hospital, just as she herself was at the end of an almost year-long stay on the eating-disorder unit. “When my grandad died, my grandmother just decided to not eat any more. She wasn’t in a psychiatric ward, she was on an old people’s ward. I think at that point, they’d probably just given up on her. I remember being really frustrated, looking at her on the bed, thinking: ‘Why can’t you just eat? I’ve done it, you should be able to do it.’”
Being in hospital herself, however, saved her life, although it was a long and extremely painful process. Very early on, she did an exercise that brought about change: a nurse asked her to draw her body on a huge piece of paper. She then asked Virgo to lie down and traced around her actual body, to compare the two images. It was an absolutely arresting, unarguable demonstration of how warped her self-image was. “From that point on, I thought: ‘I’m just going to start having a little bit of food. Start to show that I’m complying with the programme.’”
Recovery may start with the intellect, but even the mightiest mind can’t just flick a switch. The days were structured around meals, snacks and talking therapies, with all the normal aspects of teenage life excised. Patients were “constantly competing, over how much food we were eating, around people’s weights. We’d all be queueing up outside the nurse’s room where they weighed you. As soon as that person walked out of the treatment room, you could see in their face what had happened with their weight, and that was really hard. They looked distressed whatever, but they’d look more distressed if it had gone up too much – too much for them.”
A new person being admitted was also a trial. “If you were further through the programme, you would be a heavier weight than them, and that was really hard.” At meal times, people would try to squirrel away food. It created an atmosphere of intense rivalries and resentments, only occasionally broken by a moment of solidarity, not necessarily in a good way.
“There was one time when we all clubbed together and stole bread from the kitchen. It was bread that had slightly more calories than the bread we normally had, and we got rid of it. That was the only time our eating disorders interacted as a team. Most of the time, they were constantly at loggerheads with each other.”
Nonetheless, Virgo did her A-levels at hospital and was discharged in time to go to the University of Birmingham to study sociology. It was an unbelievable trial, since she emerged from hospital entirely institutionalised, with very rigid rules around both the substance and timing of all meals and snacks. If she broke these rules there was the spectre of relapse.
She kept her cereal bowl from the unit with her, so she could be certain of the amount she was eating. Close friends got used to making sure they ate at 6pm. It was already a world away from her school life, pre-hospital, when she used elaborate avoidance strategies for any group meals, but it was still a slog. “You get to a healthy weight, then you’re discharged back out into the community, on an NHS hospital food plan. You still don’t really know how to eat and how to listen to your body. It’s weird; I used to watch people eat at university and think: ‘Why can’t I eat that?’”
The university years had their own extraneous shocks – her parents divorced in her first year, her grandmother died in her third year. But she weathered these events without relapse, emerging with a degree, a solid set of friends with whom she is still very close, a few half-marathons accomplished and a running habit that was intense but under control. It wasn’t until 2016, when she was 26 and living in London, that her eating disorder returned, triggered, she believes, by the death of her other grandmother. It was a few days after this grandparent had moved into a care home, and Virgo had been to see her. “I didn’t really want to be there. I think I stayed for an hour, max, and I remember feeling really guilty for leaving, but convinced myself that I could come back the week after and it’d be fine,” she says.
Instead, she spiralled back into her old behaviours. When they became impossible to ignore, she sought psychiatric help but didn’t qualify for it, because her weight wasn’t low enough. This is, initially, what drove her to begin Dump the Scales.
The recovery Virgo describes is a complicated one: until a couple of years ago, if she was going out to dinner with friends, her boyfriend would have to call ahead “to see what they were serving, maybe pre-empt some of the conversations, say: ‘Can we not talk about calories, can we not talk about weight loss?’ I’ve also had to learn, had to remember, that my needs aren’t ahead of his, even though I’ve got a diagnosed mental health issue.”
The pandemic was a catastrophe for many people with eating disorders, as subtle but important routines – which way to go round a supermarket, which brand of yoghurt to buy – were upturned. And, in tandem, everyone seemed to go on a diet simultaneously. There will always be bad days. But this is what recovery looks like, and Virgo wants society to see it, and believe it.
In the UK, Beat can be contacted on 0808-801-0677. In the US, the National Eating Disorders Association is on 800-931-2237. In Australia, the Butterfly Foundation is at 1800 33 4673. Other international helplines can be found at Eating Disorder Hope