Roughly 1.25 million people in the UK are thought to have an eating disorder, but the numbers of people living with anorexia nervosa – where a person tries to keep their weight as low as possible by not eating enough or exercising too much – are not fully known.
Anorexia, which impacts both men and women, has the highest mortality rate of any mental illness, due to medical complications associated with weight loss, as well as the risk of suicide.
While the causes of eating disorders are complex and not yet fully understood, a combination of genetic, biological and cultural factors are involved.
Here are seven things people with the illness want you to know.
Anorexia isn’t just about being thin.
Mental health campaigner and author Hope Virgo was diagnosed with anorexia at 17 after living with symptoms for four years. She was admitted to a mental health hospital with a failing heart and spent the next year trying to recover. “I learnt about food, exercise and talking about my feelings,” she recalls.
She relapsed at 25, but says she wasn’t able to access treatment because her BMI wasn’t deemed low enough – put simply, she wasn’t “thin enough”. She has since launched the campaign Dump The Scales, a petition asking that nobody is turned away from treatment for eating disorders because of their weight.
“We have this image of people in our heads, that eating disorders only affect people who are stick thin. But actually, eating disorders come in all shapes and sizes,” says Virgo, who is 29 and lives in London. “When you look at someone in recovery they might be eating and a healthy weight but that doesn’t mean that everything is okay.
“We need to be looking at someone’s complete mental state not just their BMI because if we just focus on that, we will miss so many people. I am a healthy weight but that doesn’t mean my brain is 100% okay all of the time.”
Ellie Wildbore from Sheffield agrees. She was also 17 when her anorexia was diagnosed. Now 31 and working in a NHS mental health trust, she says: “I have never been hugely underweight, which is a huge thing people need to know. My physical appearance hasn’t always indicated how severe my psychological distress or difficulty with food is at that time. I’ve been a lot more psychologically unwell at higher weights and am actually quite settled at lower weights.”
It can take its toll on your social life.
The illness can be hugely detrimental to a person’s social life, as you don’t always feel able to join in on meals out, picnics in the summer or even going to the pub with mates. “It takes up all your free time – anorexia is your only friend and the only thing you will trust,” says Wildbore.
“Anorexia also robs you of your concentration. It’s one of the things I find hardest and is so invisible to other people, but most of the time when I am restricting I have no idea what is going on around me.
“I may look like I’m in a conversation but in reality I’m struggling to even process the words and understand it.”
It’s often about control.
Virgo describes anorexia as being like her “best friend” when she was a teen.
“It was my everything – giving me this sense of value and purpose, giving me this sense of control,” she says. At the time, she didn’t realise the dangers of such restrictive practices.
Wildbore says of her childhood: “My first ever placeable memory is to do with feeling that if I wasn’t so greedy, that a particular bad thing wouldn’t have happened – and I have always felt I was fatter than others around me.”
At some point in her teen years, restriction became a conscious decision, she says, “as I felt it was something I could control, whereas I couldn’t control my life around me”.
It’s as much psychological as it is physical.
When Ellen Maloney, from Edinburgh, was 12-years-old she just stopped eating – almost overnight. “I ended up in a medical crisis and then I spent six years up until I was 18 in hospital,” she says, adding that during that time treatment was very much focused on getting her to eat food and changing her behaviour.
“I think it’s a big misconception that you can change the behaviour and fix somebody,” she says. “My behaviour might’ve changed in hospital but then as soon as I was out, nothing was really different.”
It’s only in the past few years that Maloney, who is now 36 and studying at university, has been able to start looking into where the issues started in the first place – addressing the psychological roots.
Laura Shah, 22, from Sudbury in Suffolk, says she didn’t initially receive any psychological help and says it was “detrimental” to her recovery. “They put me on a food plan and weight-restored me, I didn’t have any therapy,” she says. While she went back to a “normal” weight, she couldn’t cope mentally.
It’s not ‘a phase’ or ‘a diet’.
When talking about anorexia to others, Shah has found people will often relate her experience to their own experiences of dieting – and it’s not the same.
People would tell her: “Oh when I was on a diet I lost this amount of weight” or “I wish I was as skinny as you, I wish I could stick to not eating loads”, which she’d find really insensitive.
“I find it very hard to explain to people that it’s not a choice diet, it’s a disorder of my brain and I’ve got no control over that,” she says. “You don’t want someone to be relating to it, you just want someone to accept it and be like ‘that’s ok, let me know how I can support you’.”
When Wildbore sought medical advice at 17, she claims she was told, “it’s just a phase, she’ll snap out of it”. But now, at the age of 31, she has endured years of hospitalisations and treatment, not only for her eating disorder but for other mental health problems. “So I didn’t exactly snap out of it,” she adds.
We’re not ‘anorexic’.
“I have anorexia but I’m not anorexic.” That’s what Shah will often tell people when she’s educating them about the illness. In the same way that a person with dementia is still an individual and is not their condition, a person with anorexia is still that same person, she explains. “The person is still there, they’re not the disorder.”
Mental Health at Work advises people to not to describe those with mental illnesses as “anorexic” or “schizophrenic”. Instead, they are a person living with anorexia or schizophrenia.
Recovery is possible.
Maloney wants others to know that recovery is possible for some. “It doesn’t mean everyone will recover, but people have done it,” she says. The sooner a person gets the treatment and support they need, the more likely a better outcome, according to eating disorders charity Beat.
While she hasn’t fully recovered and doesn’t know if she ever will be – “I still have a lot of hang-ups about food and have OCD, so that makes it complicated” – Maloney remains hopeful that it could happen to her.
“People compare it to an addiction and say it’s always going to be there,” she says, “but there’s so much evidence to say that, no, actually these people are fully recovered, they live their lives, food is just food and they have healthy coping mechanisms so it will never be an issue again.”
Useful websites and helplines: