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Secretly Starving

SECRETLY
STARVING

Websites that promote eating disorders are on the rise. In this warped online world, anorexia is not a disease but a lifestyle. With users getting younger, and the lengths they go to starve themselves more extreme, experts say the only way to understand this community - and lure them out - is to delve inside it

I got diagnosed with my eating disorder at the age of nine. I remember playing tag in the schoolyard with my friends and running around because I wanted to lose weight. I remember throwing out food in class. When celebrating my birthday, I never wanted a cake; I wanted healthy snacks and told everybody that I didn’t like sweets. By the age of 10, I had already invented lies about food allergies. I became a vegetarian and decided that I wasn’t allowed sugar.

The disgust I felt towards my body developed during a period of abuse. I was sexually abused by a family member from the age of five. It lasted until I was 12 and it has made me hate my body. I find it impossible to live with my body, so I have always tried to separate myself from it. Starving myself is a way to make it disappear, to vanish, to clean, purify and punish it.

I am very open about my anorexia. I know that I am insanely skinny. I gave up hiding it when I was 16. Before that, I did crazy things. I purged my food, I hid it in my sleeves. I put breadcrumbs on my plate to make it look like I had eaten. Now, whenever I stop eating, I just tell everyone I’m on a diet again. And people around me, they accept it. They have to.

his is Jade’s story. Jade is 24 and lives in the North East. Although she studied social work at university but is now unemployed, “because of the obvious”. Instead, Jade runs a website. She set it up when she was 14 and has thousands of followers around the world. At the top of the front page is a red banner with a white ribbon, which reads: “Anorexia is a lifestyle, not a disease”.

Jade calls herself an “ana veteran”. Her aim is to provide “tips, tricks and information” for others who, like her, are in the grip of an eating disorder. She posts her thoughts on calorie-counting, coping with hairloss and malnutrition, avoiding the “temptation” of food and how to conceal your eating disorder. Her readers, she says, are “girls who are desperate in their anorexia and willing to do anything to lose weight. They are sick, but they don’t see it as an illness. I’ve been anorexic for 10 years and I know this is the way I want to live.”

Her attitude is chilling. Instead of urging her readers to stop starving themselves, to seek help and recover, Jade helps - and often encourages - them to embrace their eating disorder, like she does. “I eat three meals a day but make sure I never take in more than 50 calories,” she writes in one post. “I eat some lettuce and season it with a lot of pepper and salt.” Another boasts: “I’ve reached a point where I can go without food for three or four days and I am able to live my life with no problems. You can do it too, but it will take discipline and hard work.”

The replies - many of them anonymous, all from strangers - are equally unsettling. “I’m new to this, I need tips and I don’t want to lose my hair,” pleads one follower of the site. “I’m 12 - going to be 13 soon.” Another has written: “Need help to keep me from bingeing and overeating after a long period of starvation.”

Yet Jade is defensive about what she does. “My visitors are my girls and I have a lot of personal contact with them,” she explains. “I do not lead them in a path of destruction, as it might seem. The moment anorexia does not work for them, I support each and every one to their own personal path of recovery.” In the past, she has talked about making parts of her website private, so that only “genuine” eating disorder sufferers can have access, and “you don’t get stupid fat jealous b*****s stalking you” - but, for the moment, it remains open to anyone who knows how to Google.

hough Jade’s remarks are shocking, they are far from unique. She is part of a growing international group of “pro-ana” (anorexia) and “pro-mia” (bulimia) bloggers, who perceive their illness as a “lifestyle” and urge others to do the same. Communities that glamorise eating disorders have been around for decades, but Jade’s is part of a worrying new generation of personal blogs and social network users who have turned anorexia and bulimia into something an aspirational state.

Of the 1.6 million people in the UK who are affected by an eating disorder, around two-thirds will have visited “how-to” sites such as hers. Last month, as data from the Health and Social Care Information Centre revealed an 8 per cent rise in hospital admissions for eating disorders in 2013, campaigners blamed these websites for the surge, warning that they are “fetishising” a serious mental illness and putting young people’s lives in danger. This weekend, experts also warned of a "silent epidemic" of anorexia that is sweeping through Britain's top independent schools, affecting thousands of teenage girls. Today marks the start of Eating Disorders Awareness Week - and charities are focusing on the sites that promote this behaviour, demanding that something is done to control them.

Writing about the rise of pro-ana and pro-mia, however, is double-edged. There is a danger that any attempt to understand the appeal of the websites will draw them to the attention of new users, perhaps those on the verge of a disorder. Dr John Morgan, a consultant psychiatrist who chairs the Royal College of Psychiatrists's eating disorder section, says raising awareness does carry risks, but remains imperative.

“We’re concerned about their toxicity but the more they are discussed, the more people tend to look for them,” he explains. “It’s like giving talks in schools on the issue - one or two will go and starve themselves afterwards. We want healthcare professionals to be aware of the negative sites, but discourage sufferers from searching for them. There’s a paradox: we’re worried but we don’t know what to do.”

Doing anything is made more difficult by the fact that this material is online - and the internet is impossible to police. Last year, the social networking sites Tumblr, Pinterest and Instagram tried to ban “thinspiration” photographs - images designed to motivate weightloss - but to no avail. They are still populated with pictures of skinny models and actresses, flaunting protruding ribs and “thigh gaps”, simply posted under different names. These are the same pictures frequently used on pro-ana and pro-mia websites. Any attempt to ban or regulate their existence would only send their users elsewhere.

Instead, experts say the only way to stop these sites is to understand them; to get inside the minds of sufferers and uncover the appeal of the online communities they inhabit. Only by recognising what turns vulnerable, damaged people like Jade into sinister role models for vulnerable individuals will we be able to lure them off the internet - and into real-life recovery.

Dr Helen Sharpe, a post-doctoral researcher at the Institute of Psychiatry at King’s College London, has conducted research into pro-ana and pro-mia websites in 2011. They are, she says, “incredibly common”. “We know from a small number of studies that viewing pro-eating disorder content is harmful as it makes healthy women experience greater body dissatisfaction and feel less positively about themselves. We also know that individuals likely to seek them out are particularly vulnerable.”

The most important factor to consider, she explains, is “why people are choosing to seek out these groups - what do they give people that they can’t get elsewhere? Eating disorders can be extremely isolating conditions, and so finding a community of other people who think like you can be a powerful draw.”

This idea of community, of anorexics and bulimics feeling the need to “belong” to a virtual family, is played out across a number of the websites. On the world’s largest pro-ana forum, which has 65,000 users and 1.5 million posts, many topics are available exclusively to members - with increasing layers of access granted the longer they stay with the site.

“It’s like Dante’s circles of hell,” explains Dr Morgan. “The more private a site is, the more deviant, toxic practices it advocates. This introduces glamour; people feel they are being initiated into a group. Group therapy in anorexia is a powerful tool but these websites can bring out the worst in people, rather than the best.”

“There was one game where you had to lie on your back and if you were higher than the length of a biro, it meant you were fat.”

Dr Morgan is conducting a study of 120 patients, yet to be published, which shows that their access to pro-ana and pro-mia websites “has strongly influenced their behaviours”. There are two basic changes, he says: “first, it reinforces their grasp of their existing behaviour, so people who are losing weight lose more; people who are purging purge more. Second, it teaches new behaviours: they discover things they’ve never thought of before, such as water-loading [using liquids to stave off hunger pangs or increase apparent weight] to deceive your parents or your GP.”

In the digital world, the real-life consequences don’t seem to matter. Detachment from reality characterises the attitudes of most users of these blogs and forums: many of them write anonymously or under infantile nicknames, and use avatars of skinny models or cartoons. When they refer to their illness, it is with affection - almost pride - not pain. “Ana” or “Mia” is given female characteristics and humanised to the point that “she” becomes a sufferer’s ally against recovery.

Lynn Crilly, a Surrey-based counsellor and author of Hope with Eating Disorders, came across these communities when her daughter was recovering from anorexia. She says portraying the illness and its sufferers as “friends”, whom site users will stop at nothing to impress, makes it much harder to log off.

“Lots of them wear coloured bracelets [red for anorexia, purple for bulimia] to show that they belong to certain groups on these sites,” she explains. “It’s like a clan. They’re all competing with each another to be the skinniest and to lose the most weight. They have ways to measure it: the thigh gap, the bikini bridge, and there was one game I found where you had to lie on your back and if you were higher than the length of a biro, it meant you were fat.”

arah Robertson remembers the warped world of pro-ana. She was 25 when she was diagnosed with anorexia, and spent years recovering in outpatient treatment in Staffordshire. “I came across pro-ana websites after reading an article in a teenage magazine when I was 14,” she explains. “I was fascinated. Something clicked; I thought: ‘They’re like me, but I’m not like them because I’m not emaciated.’”

In the throes of her illness, Sarah, now 28, registered on a pro-ana forum and began writing an online diary about what she was eating; her frustrations; parts of her body that she hated. “Then I started posting weightloss pictures. I’d write what I was going to eat in advance so that I was accountable and I’d be disgusted with myself if I dared eat any more. I lived in fear that someone would comment, ‘You’re eating too much, no wonder you’re not thin.’ It was bullying in a sense, but friendship in another.”

A concerned friend deleted Sarah’s account but, during treatment, she continued to interact secretly with other sufferers via an exercise app on her mobile. “In the wrong hands, it’s toxic,” she says. “You can make your profile private, you can count calories - and there are pro-ana groups in the forums. Nobody stopped me. I could get on it 24/7 and got sucked in. I don’t think I knew I was ill. I thought I’d found people who knew who I was, who weren’t judging me for losing weight.”

Though many people actively search for pro-ana and pro-mia websites, others - like Sarah - stumble across them. Young people are spending more time online than ever, on mobiles and tablets all hours of the day and night. Pictures of celebrities and supermodels take up a disproportionate amount of this virtual space, parading their bikini bodies and boasting about extreme diets (most recently, tissues and cotton wool). Against this backdrop, it’s increasingly likely that an innocent search for “fitness tips” or “weightloss” will lead internet users to more sinister places.

“I was religiously following guidelines from several sites: eating crushed ice to deaden my appetite, half an apple a day - no more or it was failure.”

Professor Bryan Lask, medical director for eating disorders at the charity Care UK, says social media is a “very important part” of his patients’ lives. “Eating disorders are genetically-determined, but the society in which we live - which creates thinness as an ideal - plays a major contributing role,” he explains. “I have one patient who spends many hours a day blogging about her experiences. I have others who spend many more hours reading other people’s blogs. It becomes their lives. It’s an escape from the inner pain and the confrontation of the external world.”

These patients, however, aren’t always young women. Though the highest incidence of anorexia is among females in the age bracket 12-28, many sufferers are much older - and around 11 per cent are male. David, from north London, is in his forties and has suffered from anorexia and bulimia for 30 years. He says his addiction to eating disorder websites contributed to a “breakdown” at a time when he was starving himself, purging food and abusing diet pills he had bought online.

“I became obsessed with pro-ana sites in 2007 and they made me extremely ill,” he admits. “I was religiously following guidelines from several sites: eating crushed ice to deaden my appetite, half an apple a day - no more or it was failure - half a cuppa soup for a meal.” Though David used the sites himself, he says he was “shocked to read young girls of 8 to 10 typing things like: ‘Just eaten a cream cracker, please forgive me everyone; I’ve made myself sick and taken 20 laxatives’.”

s contributors to these sites get younger and younger, Beat, the UK’s largest eating disorder awareness charity, is becoming more troubled by their existence. Susan Ringwood, Beat’s chief executive, says they feed a mindset that is already distorted.

“If people are affected by anorexia, their ability to judge their own body’s shape and size will be compromised. They can’t judge themselves accurately, yet they’re comparing themselves to people on the site. They forget that these aren’t real-life, walking talking people - the photographs they post are manipulated and lots of them aren’t telling their full story.”

Fake profiles, however, aren’t her biggest concern. There is a little-known but disturbing link between pro-ana websites and online pornography, which makes their existence even more alarming. The rise of “skinny porn” is well-documented in the research world, but it is a difficult subject to broach with sufferers.

“It’s almost like grooming,” explains Ringwood. “There is a group of people who get sexual satisfaction from looking at these emaciated people, most of them photographed in their underwear or without many clothes. These individuals pose as young girls [in chat rooms and forums] and encourage others to post pictures of themselves. When you visit these sites, you get even more inundated with pornography than on other websites. They are linked. That’s because the same people access both.”

It’s a terrifying thought for Alice Craven, 22, from north London, who visited pro-ana websites when she was discharged from The Priory after being treated for anorexia in 2010. “I went on them during relapses,” she says. “It was just people festering in their own misery. I could never figure out who was running them; it wouldn’t surprise me if they were old men seeking out vulnerable young girls to tell them they’re pretty.”

Alice’s weight dropped to 39 kilograms during a period of depression and exam stress. Though she visited pro-ana sites, she says she hated what they stood for. “People have been working for so long to make people see eating disorders as a mental illness, and the idea of ‘pro-ana’ goes against that. It’s really scary.”

Online, she explains, she found a source of weightloss tips and methods for deceiving doctors and parents. “Things like wearing weighted wristbands when you’re going for weigh-ins or downing three-litre bottles of water to fill you up.”

Taken to the extreme, these innocuous-sounding “tips” could be not only unhealthy - but dangerous. Eating disorders have the highest mortality rate of any mental illness, with 20 per cent of sufferers dying prematurely from the disease and associated medical complications. Websites that promote anorexia and bulimia as a lifestyle choice are feeding a mindset that can, ultimately, be fatal.

Rosalind Ponomarenko-Jones knows this statistic well. In December 2006, she lost her daughter Sophie Mazurek, a 19-year-old student, who had suffered from anorexia for two years. Sophie, who by then weighed just four stone, died of heart failure. “Previously she had been an extremely sweet-natured, happy, confident young woman,” remembers Rosalind. “She was theatrical, loved dancing and singing. She became withdrawn, moody and secretive. It was like being with a different person.”

Rosalind thinks Sophie may have visited pro-ana sites when she was discharged from a mental health unit in Stoke three months before she died. “Pro-anorexia websites are often created misguidedly as ‘support’ groups to share ways of losing weight,” she says. “Obviously it does not help them get better; it colludes with the illness. If young people understood that the illness has a high death rate and lifelong health implications, maybe they wouldn’t be so willing to look at them in the first place.”

here is no evidence that pro-ana or pro-mia sites cause eating disorders; and certainly no suggestion that those who run them can be held accountable for the tragic consequences of the illness. What is clear, however, is that they can have a destructive influence on unstable minds - and something must be done to control their spread.

In 2008, 40 cross-party MPs brought an early day motion urging the Government to act against online eating disorder communities. The following year, the Royal College of Psychiatrists also called for action, requesting that pro-ana and pro-mia sites be included within the definition of “harmful content” devised by the UK Council for Child Internet Safety. The Department of Health said it was “concerned” about the websites and was considering a plan. To date, however, little has changed.

Mark Hunter, MP for Cheadle in Greater Manchester, was responsible for tabling the motion six years ago. “I was certainly not the only MP who was concerned,” he explains. “I’ve recently written letters to Maria Miller, the Culture Secretary, and Theresa May, the Home Secretary, to ask them to take a look at this. My call is for internet service providers to look more closely at self-regulation, because if they don’t there will be more pressure brought to bear on Government and ultimately we will have to act.”

“Simply banning these sites won’t work because users will resurface elsewhere, using different codewords to get around restrictions.”

Some internet service providers are already proactive, removing the more harmful sites, such as those linked with self-harm or suicide, as soon as they appear. Yet there is a grey area into which most pro-ana and pro-mia sites fall, making them almost impossible to regulate from the outside.

Simply banning them, says Dr Emma Bond, a senior lecturer in childhood and youth studies at University Campus Suffolk, won’t work - because users will resurface elsewhere, using different codewords to get around restrictions. In 2012, she found that there were around 500 such websites in the UK - but in the two years since, that number has multiplied to the hundreds of thousands. “What they show is the individualisation of the performance of an eating disorder,” she explains. “It’s their form of self-expression - and you can’t shut that down.”

Another option, she suggests, is the use of pop-ups, warning users that the content they’re about to see might trigger behaviour associated with an eating disorder. Research in Holland in 2009 found that click-through warnings did deter first-time users from accessing the sites. “Saying that, Facebook has an age limit of 13 and kids are on it by eight,” Dr Bond adds. “So it’s hard to know if disclaimers would work.”

Experts do agree that young people need to be made aware of these websites, so they can understand the risks behind their appeal. Natasha Devon runs the Body Gossip programme, which has taught self-esteem to 30,000 teenagers in schools around the UK. “A lot of girls I meet think that in order to be accepted and trendy, they have to starve,” she says. “The only way we can deal with sites that feed these thoughts is by building up their resilience, and by updating the curriculum in health and sex education to acknowledge that the internet is a massive part of their lives.”

And this is the heart of the problem. The influence of the internet - and the huge role it plays in our world - is only set to grow. If pro-ana and pro-mia sites are common now, there will be more in years to come. Yet Beat’s Susan Ringwood says this shouldn’t be a source of worry - instead, we should find ways of encouraging positive discussion of eating disorders online.

“Creating a digital profile and interacting with others online can be a healthy way of exploring your identity, especially when you’re feeling vulnerable or insecure,” she explains. “We need to give young people these kinds of creative opportunities through regulated forums or messaging sites, ones that don’t glamorise the illness. Not all sites dedicated to eating disorders are nasty; some are welcoming and constructive.”

uby, a 32-year-old from the West Country, runs an eating disorder blog. She has lived the “half-life” of anorexia since she was 16 and has been in and out of hospital five times. With her doctors’ permission, she writes to me from inside a psychiatric unit, where she is seeking treatment after decades of concealing her illness. “I hid food in tissues, I poured my supplement drinks down the drain,” she admits. “I purged into plastic bags and hid it in my wardrobe. I exercised secretly in my room.”

Ruby’s story is heartbreaking. She has never had a job, has isolated herself from friends and family and says she feels “worthless” and “numb” because she is hungry all the time. Yet, though she shares many characteristics with other sufferers who write online, Ruby’s blog is very different from a pro-ana website. There is no banner at the top claiming that anorexia is a lifestyle, no “10 thin commandments”, no encouragement to others to starve themselves skinny.

“It’s a sad truth that my virtual life is more active than my real life. Words on a screen are not the same as a hug, as a cuppa or a chat.”

Instead, there are sections explaining binge eating, myths and treatments. Her writing is stark and matter-of-fact; her tales of things she has done to her body shaming and unpleasant. Ruby has 300 followers and has won blogging awards from health organisations for her honest account of her disorder. Most importantly, she urges her followers to seek help. “It’s a daily battle,” she explains. “There is a tug of war going on in my head. Recovery or eating disorder. Life or death. Fight or give up.”

Ruby’s website is by no means perfect. But it shows the positive potential of eating disorder blogs - and the type of content that Beat and other charities suggest should be promoted as an alternative to pro-ana. “I don’t think pro-ana girls are bad people and they don’t realise how dangerous their behaviour is,” says Ruby. “While my blog describes life within an eating disorder, the others describe trying to attain an eating disorder. I would never choose to be this and I wouldn’t wish it on my worst enemy.”

There are signs, too, that writing her blog, and diarising the darkest moments of her anorexia, have spurred Ruby on towards recovery. One post, written a few months ago, is particularly revealing.

“It’s a sad truth that my virtual life is more active than my real life,” she writes. “Words on a screen are not the same as a hug, as a cuppa or a chat. It makes me so sad to think of all the girls here killing themselves trying to lose weight. I have to keep reminding myself that I am one of those girls. I am unwell. I need help and I need to help myself first. It is time for me to start living.”

Since we spoke over a month ago, Jade’s pro-ana blog has gone offline. She doesn’t reply to my emails asking why. I can only hope that she has decided to start living, too.

If you or anyone you know is affected by the issues raised in this article, contact Beat, the national eating disorder charity, on 0845 634 1414 or 0845 634 7650 (Youthline), or visit b-eat.co.uk

DMU Timestamp: March 21, 2014 21:54





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