Eating disorders: Not everyone is young, thin, white or a woman

Eating disorders: Not everyone is young, thin, white or a woman

Eating disorders: Not everyone is young, thin, white or a woman

Updated 8 December 2017, 16:10 AEDT

When you don't look like the thin, pretty white girls with anorexia in TV and movies, getting help for your eating disorder can feel impossible.

To the outside world, it seemed like Nicole McDermid, who had struggled with weight issues her whole life, was finally taking control and getting healthy.

She'd always had a bigger body, but now she was within what would usually be considered a healthy weight range.

At family gatherings, people congratulated her on her weight loss. Her friends praised her for finally taking her weight seriously. Doctors, who she had always struggled to get to see past her weight, were telling her how well she was doing.

What those on the outside couldn't see was the then-27-year-old social worker was in the grips of a serious eating disorder wreaking havoc with her mental health and possibly even putting her life at risk.

"The rational, social worker side of me could see things were spiralling out of control but then there was a part of me that was really in denial, that was going, 'No, no, no, this is OK, this is for my health, this is good'," Nicole remembers.

"No-one really got the extent to which it was torturous in my head. All they really saw was that I was losing weight and this was a really good thing for my health.

"There was this massive disconnection between what people saw and what I was actually going through."

Nicole was eventually diagnosed with atypical anorexia, a condition where she met all of the criteria for anorexia nervosa except for being underweight.

Atypical anorexia expert Professor Susan Sawyer from the University of Melbourne says patients don't have to be dangerously underweight to have life-threatening symptoms.

Her research has found atypical anorexia patients are just as likely as patients with textbook anorexia to have the arrhythmias and cardiac irregularity that can cause sudden death.

But beyond the physical risks of the eating disorder, Nicole said the most torturous part was the exhausting, incessant internal monologue telling her nothing she did was good enough.

"For somebody with an eating disorder, it's psychological torture," she says.

"There's this constant voice that is berating you every second of every day about every decision that you make, regardless of whether it's about food or exercise. It can be about what clothes you wear, it can be about a conversation you had with somebody three weeks ago that it decides it wants to chime in on."

Fears of being seen as too big to have an eating disorder

Eventually, a tough conversation with a concerned colleague helped Nicole begin her path to recovery, but seeking help for an eating disorder while living in a bigger body presented its own challenge.

"It can be a really confronting thing, going to the doctor and saying, 'I think that I'm struggling with an eating disorder' and having this massive fear of someone going to laugh in your face like, 'how can you be? Look at the body that you're in'.

"I felt like I needed to be at a certain point on the scale to feel like I would be taken seriously."

Nicole's concerns aren't unfounded: psychologist Sarah McMahon says there are many stories of people being sent away by doctors saying they're not sick enough to have an eating disorder because they weren't underweight.

"[It] is obviously devastating for them and really difficult because often there's been many years of suffering before that person has picked up the courage to actually seek help in the first place and it may mean that it's many more years again before they approach any sort of treatment options," Ms McMahon says.

An early conversation between Nicole and her family GP, who she had gone to since she was a baby, actually fuelled her desire to lose even more weight.

She approached him in distress, saying she knew something was wrong, and was met with congratulations for "getting healthy".

"And then being met with a comment from him around, 'Well, you still have a certain amount of weight to lose before I'm really worried'," Nicole says.

"For somebody with an eating disorder that's kind of like, 'OK, game on'. It's so unhelpful."

Professor Sawyer says families and doctors need to look more closely at warning signs other than simply being underweight.

"The GP's got it in their head, just like everyone else, that anorexia nervosa equals underweight. So the first thing they're going to do is to measure the BMI and be reassured that they're in a healthy range," she says.

"But what we need to do is take less notice of what the weight is and more notice of what the context is of that weight loss."

Stereotypes make it harder to recognise symptoms

When eating disorders are mentioned, it's usually the same image that comes to mind: a painfully thin, young, white woman, almost always with anorexia. Think many of the characters in Girl, Interrupted, and more recently, Cassie from Skins and Eli in To The Bone.

"The young-thin-pretty-girl narrative is quite an easy one for the public to understand," says Joanna Doley, a PhD candidate at La Trobe University, whose research is exploring ways to reduce eating disorder stigma.

"It's a neat and understandable depiction of what an eating disorder is, when really we know that eating disorders are a lot more complicated and a lot messier than that."

But this reliance on a familiar stereotype can make it harder for people to get help if they don't fit the mould, Ms Doley says.

"If people don't recognise themselves in depictions of people who have an eating disorder and don't think they fit the type, they might think there is nothing wrong with them and fail to recognise that they have a problem," she says.

It also can hinder the friends and family of the person with the eating disorder from recognising what's going on and offering help, she says.

What's more, anorexia isn't even the most common eating disorder, even though it's the main one we see in pop culture.

Bulimia and binge-eating disorder diagnoses are more common, Ms Doley says.

'You don't have an eating disorder because you're not white'

These diagnoses are all too familiar to Gloria Lucas, who started struggling with binge eating around age 10 and had developed bulimia by the time she was 17. But it took her more than 12 years to seek help, partly because of the gaping divide between her own reality and what she was seeing in the media.

"Anorexia, which has been the eating disorder which predominantly comes to mind when we address eating disorders, it doesn't necessarily make people cringe as much as when we're talking about binge-eating disorder, or bulimia," Gloria says.

"There's a different reaction to [binge-eating and bulimia], due to how it's been portrayed in media as people who lack control and are disgusting and so forth."

The other factor that led to it taking years before Gloria found help was her ethnic background. She is Xicana, of Mexican Indigenous descent, and lives in Los Angeles.

"I felt … that if I opened up about my eating disorder, I would be denied," she says.

"I would be told, 'No, you don't have an eating disorder because you're not white, and you're not this, and you're not that'.

"For many years I was silent about my eating disorders. In my family, there was no language to speak about eating disorders. If you're coming from migrant families, many times the language is not there."

Gloria believes a more diverse depiction of eating disorders in television and movies would help people seek help. She's determined to be part of the solution, founding online eating disorder awareness project Nalgona Positivity Pride (NPP), with the aim of publishing a book telling the stories of diverse people who have been affected by an unhealthy relationship with food.

"I don't feel like we need any more movies or films about a white, privileged girl who goes to a clinic and gets support and help, because the majority of people with eating disorders do not even get treatment," she says.

"I think NPP has just really hit a nerve with a lot of people that have been struggling behind closed doors, or who have been unable to talk about eating disorders with their families.

"A lot of people of colour, including trans people of colour, have felt unnoticed and quietly struggled with body image or food."

Fitness fanaticism masks something more sinister

Luke O'Neil differed from the eating disorder stereotype in another kind of way: he's a 40-year-old man with an exercise obsession.

Because it wasn't an issue that is commonly portrayed in the media, he didn't think of it as a problem at first, but a back injury forced him to re-evaluate why he was pushing his body so hard.

"I realised [the physical therapists] were encouraging me to rest and I couldn't really do that. I started to think about why that was, why I couldn't really take their advice and rest," he says.

In an article for Esquire, Luke, who lives in Boston, described spending holidays in fitness centres while his wife toured Mexican pyramids and sampled whiskey in the Scottish Highlands.

His story struck a nerve.

"I got emails from, probably, 30 to 40 guys who commiserated with me about how they've gone through the same thing and [I] heard all their stories," he says.

"They're all very similar guys who'll be on some wedding vacation on a beach and they're sneaking off to go for a run right before the ceremony, or guys who have to take their bike with them everywhere even if it makes no sense for them to go on a long bike ride."

As men in television and movies become increasingly buff — "you have someone like Burt Reynolds from the 70s and 80s … now it's Channing Tatum" — men's perceptions of their own bodies have become more critical, Luke argues.

But portrayals of men and eating disorders continue to lag.

"[There is] nothing really depicting compulsive exercising. If there is, it's framed in a good way," he says.

"In Parks and Recreation, the Rob Lowe character, it's funny because no matter where he is, it's like, 'Oh, time to go for a 20-mile run' and he's doing it in all sorts of wacky situations.

"So, if anything, it's framed as this goofy thing.

"Everyone's like, 'Oh, I wish I had that energy'."

Multi-layered support leads to recovery, self-acceptance

Luke admits he's still struggling to approach exercise in a balanced way, and Gloria wasn't prepared to wait until she recovered to found NPP, but Nicole says that, six years after her eating disorder spiral began, she's happy and fully recovered.

Her recovery involved working at various times with a GP, psychologist, dietitian, psychiatrist and a public day program for people with eating disorders.

In time, she's learned to tune in to her body's hunger cues and re-evaluate where her sense of self-worth should come from.

"It's hard to pinpoint a time when I woke up and was like, OK, I don't have an eating disorder anymore. It was not an epiphany, it just kind of happened as I became more comfortable in my own body," she says.

"I challenged my thoughts about my body and what my body should look like and I let go of the idea of needing to be thin.

"As I slowly let go of these things over time and started to embrace the body that I'm in, that's when I found peace."

Part of that finding peace? Regaining weight.

"All the weight that I'd lost I've now gained back through recovery — and for me, that's absolutely OK. That was part of my process of learning to embrace the body that I'm in," she explains.

"I live unapologetically in the body that I'm in at the moment and that's actually a really lovely thing."

The Butterfly Foundation is currently running an online survey examining the impact of body image on the daily lives of Australians. Take the survey here.