What’s it like to have an eating disorder online?

A young woman tells the story of her anorexia - and an eating disorder expert talks about how tech has made her job harder.

Mental health and wellbeing
By VoiceBox ·

Tara (not her real name)

Young author

Mirror mirror on the wall, who’s the thinnest of them all?

Please note: this article includes sensitive topics that some people might find difficult.

Ana and Mia. They sound so inviting. The type of friend you can rely on. The type of friend who will never let you down. And this is exactly what Ana and Mia want you to believe.

When I was suffering from anorexia nervosa, my therapist, let's call her ‘Z’, told me my brain had a dangerous chemical imbalance; it had been split into two and the part that was me and not Ana would get smaller and smaller until there was nothing left.

Z was right. I had been completely consumed by what I thought was my best friend. Ana was there, all the time, no matter what. She exhausted my mind, never letting me eat but instead making think about food, read about it, watch it, and count the calories in it religiously. She told me that if I was just a little bit skinner I would have friends, I would be beautiful and I would be happy. If I dared to eat a morsel of food she would tell me I was fat, useless, and ugly, and she would punish me by making me exercise until I passed out.

‘Fat’ was a word I thought about regularly. A lot of people will roll their eyes and say ‘fat isn’t a feeling’ but anyone who feels self-conscious about their body knows this isn’t true. The famous saying, ‘nothing tastes as good as skinny feels’, often delivered semi-approvingly or at least with a wry smile, is utterly grotesque, revealing the pit of fake positivity into which our society has fallen. To those with an eating disorder, fat is a feeling. Feeling fatness physically growing on me after eating was enough to make me scratch my skin raw in an attempt to ‘get it off’ me.

My words may seem shocking, especially if you know someone who's in a similar situation. An eating disorder is not glamorous, or attractive, or a lifestyle. It is a devastating illness that can ruin lives; and the faster it is caught the higher the chance of recovery.

A frequent solace for those with an eating disorder are pro-ana and pro-mia sites. Often, the person behind them is also suffering from a mental illness. Visitors exchange extreme weight loss tips, ‘inspirational’ quotes, and stories of ‘deviance’ in order to avoid eating. These sites should be shut down, yet their attraction is that they are a place you can go to feel understood and accepted.

For this reason, it is extremely important that sufferers get the correct support as soon as possible and understand that they are not alone. They often feel isolated and they will lash out and accuse those who try to include them of trying to make them fat. Do not indulge them, do not reason with them, do not judge them and don’t say ‘I understand’ or ‘I know how you feel’. Unless you have also had these illnesses, you will have no idea what they feel like. This is why pro-ana and pro-mia sites are so popular: plotting together and supporting each other in a ‘journey to perfection’ is what people with eating disorders crave. Those who visit these sites are usually not in recovery. They do not want to get better and they do not want help. At best, they want someone to tell them they’re feeling the same way, and at worst, they want to compete with others to become the sickest.

Like most areas of the internet, a lot of pro-ana and pro-mia sites use algorithms so that advertisers can target specific internet users with products that might be of ‘interest’ to them. As you can imagine, I spent a lot of time googling food, dieting tips, recipes and of course, pro-ana sites. One day, during my usual internet routine, I got a pop-up advert for diet pills. I didn’t consider the consequences of clicking on an ad that promised to make me beautiful. My only priority was to lose weight, fast. I ordered some pills, thinking I’d ordered one round, something that (hopefully), my parents wouldn’t notice. Alas, I was cheated out of £80 and a year’s supply of diet pills arrived at my house. My mother, naturally, was completely bewildered that I would order an appetite suppressant, and fuming that such a substantial amount of money was gone.

It took a long time for anyone to wake up to the fact that I was sick, even though I was screaming at my sister for not eating the high-calorie food that I had made her, obsessing over fitness apps, and arranging the food in the kitchen over and over again. I was also losing weight: the physical ailments that come with an eating disorder are often the eventual killer: brittle bones, hair loss, organ failure and heart failure are all possible side effects, although not all sufferers are underweight.

I was put on a strict regime of eating: set meal times, snack times, and a list of ‘safe’ foods I had chosen. Safe foods are essentially, food you aren’t so scared of. Z put me on a lot of protein shakes (which were absolutely disgusting), as a way to get high volumes of calories into me without eating too much and damaging my unnaturally small stomach.

Food routines were non-negotiable. I remember hours sitting at the dinner table as I refused to eat what was in front of me, not being allowed to leave until every scrap was gone. This system of eating was an extremely important element of my family life. Professional help is paramount to recovery, and there cannot be conflicting messages at home, even though taking a stand can be hard, as sufferers will often manipulate and blackmail their families to avoid eating. This behaviour isn’t them; it's the eating disorder.

Pro-ana and pro-mia sites can be a huge influence in the development of an eating disorder. They can delay recovery and have the potential to make you worse. They are unlkely to be the originators of the problem: the latest research suggests that eating disorders have a genetic element that is triggered by environmental causes.

Pro-ana and pro-mia sites aren’t the only or the main signs of an eating disorder - but if you are using them, or think you know someone who is, the most important thing is to seek advice from a professional. The quicker this illness is caught, the higher chance there is for recovery, so if you have any reason at all to believe yourself or someone else is suffering, take action.

I never go on these sites anymore. I was lucky enough to get fantastic support from both professionals and from my friends and family, and now I can say I am pretty much recovered. I still relapse sometimes, but I have developed tactics to pull myself out of Ana’s grasp when she tries to capture me, and I am growing stronger and stronger each day.

Sue Wilson

Sue is an advanced specialist practitioner with 37 years of experience working with eating disorders.

Pro-ana and pro-mia websites make my job harder

Please note: this article includes sensitive topics that some people might find difficult.

There can’t be many jobs that have been made harder by the advent of technology. Mine certainly has. I am an advanced nurse practitioner specialising in eating disorders: I have managed a large in-patient unit in the private sector, a community outpatient service in the NHS, and I now have my own private practice. Reading the emotional and eloquent account from Tara, a sufferer of anorexia nervosa on VoiceBox, I realised that if my job is more challenging now than it was, the battle towards recovery is harder still.

Tara’s story describes so well the terrifying mental whirlpool that develops when physical starvation affects the thoughts of sufferers. The more weight is lost, and the longer the starvation-state continues, the harder it is to break free. Everything becomes more extreme and rigid. Thoughts and feelings prevent the sufferer being able to make decisions based on facts. It was good to read that this sufferer had a supportive family and also good specialist professional support.

It was 1979 when I first met someone suffering from anorexia nervosa. I was a student nurse on an in-patient ward and I remember her description of the constant dialogue inside her head between her reasoning self and the destructive ‘ana’ voice that shouted louder and louder. Most of all, I remember the change in her once-bubbly, outgoing personality. Her world lost fun and spontaneity. Instead, intensity, isolation and misery (which she didn’t recognise as such) took over.

I remember feeling terrified and fascinated in equal measure. I resolved to try to understand this complex illness and the strange world in which sufferers find themselves. Today my youngest patient is 13, my eldest is 76, and my terror and fascination continue. While I have a greater understanding of this disease, I am the first to admit I will never totally ‘understand’ it.

How can I, when sufferers themselves struggle to comprehend their situation, let alone to find a way out? One of the most frequent questions I am asked in my consulting room or when I give talks is: ‘do people with eating disorders recover’? The resounding answer is YES. Statistics are often not encouraging - but, with early intervention and engagement with a specialist service, a full recovery is possible, especially when the physical and psychological symptoms are dealt with together.

An essential part of treatment, though, is relapse-prevention and long-term monitoring to ensure that long-held thoughts and beliefs don’t creep back at times of stress. The majority of my patients describe thoughts ‘lurking’ in their head - but crucially, they reach a stage where the thoughts don’t lead to action, and the ideas aren’t constant and all-consuming. (This is described so well in Tara's account - she was able to reach a stage where she could see a pop-up about diet pills and not have to order them.)

Pro-ana sites and pop-ups didn’t exist when I first treated patients. The rapid, startling arrival of technology at first seemed promising: websites, podcasts and chat rooms appeared to support sufferers in their quest for recovery. But it was no time at all before pro-ana and pro-mia sites emerged, promoting anorexia nervosa as a lifestyle choice.

Anorexia isn’t a ‘lifestyle’. The dangerous behaviours advocated on these sites are driven by an intense compulsion to pursue absolute perfection and retain ‘control’. It is a perfection that is never perceived or achieved.

Anorexia Nervosa remains the psychiatric disorder with the highest mortality rate. Despite guidelines, legislation, and extended treatment over the years, it has proved intractable, and it is more prevalent than ever. It straddles physical and psychiatric medicine and sufferers are adept at not making changes and exploiting gaps in the knowledge of professionals they meet. They are the ‘expert’, a belief often fuelled by pro-ana sites.

The fear of losing a grip on the eating disorder is real and intense. It leads in many cases to a complete denial of the existence of a ‘problem’.

My role is to stand firm outside the world of eating disorders, to provide structure, support and boundaries, and to be the voice of hope. To gain the trust of someone who ‘knows’, or strongly suspects, that my agenda is to make them ‘fat’ and unhappy. And eventually to bring some humour and fun into their treatment to balance the intensity of a world dominated by food and weight.

The first step for sufferers is to communicate - about anything, even if what you have to say doesn't seem to make sense. Talk to anyone you feel you can trust. Sometimes this will be a friend, or a teacher or a family member. It might even be a complete stranger. You don't have to make any commitments, certainly not to changing.

Sadly, pro-ana sites are all too accessible. But take a step back. Professional help will help you help yourself. Sufferers in recovery can help you see a world beyond the eating disorder and offer guidance and hope. But you won’t find them on pro-ana sites. Many will ‘advertise’ their recovery while in fact having a tenuous hold on a fragile reality.

Pro-ana sites are regularly shut down by regulators but reappear on a daily basis, as sufferers look for a forum to ensure they are the thinnest and the most ‘successful’ sufferer. The negative and dangerous impact of these sites cannot be overstressed. They don’t face up to serious health concerns like osteoporosis, cardiac problems and infertility. And if they do, these things are seen as a ‘badge of honour’. My advice to patients is to avoid them and consider pulling away from social media entirely during treatment. You can also report these sites to B-eat anonymously. I also suggest only reading material which is recommended by professionals or B-eat.

Finding a professional to talk to can sometimes be difficult. Often you will see your GP first and their understanding of eating disorders may be limited. Don’t be put off. They may not be specialists but can often signpost you to someone who is. The B-eat website is invaluable. It’s help-finder section will show you local specialists. Many of these can be contacted by email or text. Above all, try to keep your sense of humour.

B-eat - the national eating disorders (ED) charity has an excellent website and helplines. It is monitored and encourages positivity. There are leaflets to download and a help finder which helps locate services which can help.

NICE guidelines provide information about standards of minimal care and how to access services.

Sue Wilson

Sue is an advanced specialist practitioner with 37 years of experience working with eating disorders.

"Reading the emotional and eloquent account from a sufferer of anorexia nervosa on VoiceBox, I realised that if my job as a clinician is more challenging now than it was, the battle towards recovery is harder still."

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