Nearly half a million Aussies have the same eating disorder. But it's not what you think.

This article includes descriptions of disordered eating that may be distressing to some readers.

It's a Tuesday afternoon, and a nine-year-old Melani De Sousa comes home from school and heads straight to the pantry, looking for something to snack on. 

While it might paint a pretty normal picture of any Aussie kid, hungry after a day of school, Melani's story is different.

"I would spend the next two to three hours eating everything I could," she recalls. 

"I remember filling large cooking bowls with cereal, honey and milk and sitting in front of the TV while I ate and ate."

"It began as a way to cope," she told Mamamia. 

After immigrating to Australia with her family, eating became the only thing she said she truly looked forward to, using it as a crutch to detach from her emotional pain. 

Now 32 years old, Melani has lived with a binge eating disorder for 15 years. 

It took a decade for her to get the correct diagnosis and treatment.

Then there's Lyndi Cohen. 

She's a well-renowned Australian nutritionist, dietician (known on Instagram as @nude_nutritionist) and author who is open about her experience with binge eating disorder on social media.

In an interview with Mamamia, she said: "I was put on my first diet at the age of 11 for no reason other than the fact that I wasn't thin. I wasn't in the weight range according to BMI. I started counting calories, weighing myself, and avoiding certain foods — it wasn't just about eating smaller portion sizes. 

"I was, at the age of 11, weighing my food because I thought I was eating too many calories, recording everything I ate in a diary and really upped my exercise to burn food and get to the correct weight for the weigh-ins with my nutritionist.

"I didn't develop binge eating until I was about 15 or 16 years old. While I was willing to starve myself to be a thinner version of what I thought I needed to be, my body had different plans. It wouldn't allow me to self-sacrifice. Because I was essentially starving myself and making myself feel emotionally restricted by what I was eating, I started binge eating.

"And it took control of me. I would hide in the pantry and binge-eat anything I could find. I would binge eat unhealthy food like chocolates and chips just as readily as I would binge eat foods like carrots or yoghurt — my binge eating didn't discriminate.

"After a binge I would feel completely guilty and a lot of shame for what I had done, not realising it was actually a protective mechanism, helping me to stay fed.

"I always felt very out of control, I felt totally unable to stop, and I really hated my binge eating. But at the same time, I always looked forward to it. It was also a way I soothed myself and the repercussions of all the dieting I was doing."

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A post shared by LYNDI COHEN // Nutritionist (@nude_nutritionist)

The sad reality is, stories like Melani and Lyndi's are not unique. In fact, they're now more common than ever.

According to The Butterfly Foundation, the number of people in Australia with an eating disorder is approximately 4 per cent, which is estimated to be around over one million people.

Of these people, 47 per cent have binge eating disorder. 

This is compared to three per cent of people with anorexia nervosa, 12 per cent with bulimia nervosa and 38 per cent with other eating disorders. 

Of people with binge eating disorder, it's worth noting that just over half (57 per cent) are female.

Yet, how much do we know about the most common eating disorder that impacts nearly half a million Aussies? 

Because in 2023, as the prevalence of binge eating disorder continues to rise, binge eating disorder is still very much shrouded in toxic misconceptions, underlying stigma and shame — and no one's talking about it. 

Why? And where does it leave us?

Mamamia investigates.

A misunderstood disorder.

Mamamia spoke to Joyce Tam, Clinician and National Helpline Manager for Butterfly Foundation.

She said, "Binge Eating Disorder (BED) is a serious psychological illness and Australia’s most common eating disorder. BED is characterised by regular episodes of binge eating, which means eating a large amount of food in a short period of time, with a sense of being out of control, or unable to stop." 

"A person with BED may feel numb, or feel disconnected from their body while eating, not fully tasting or experiencing the food. Binge eating often evokes feelings of guilt and shame, and a person binge eating may eat alone or be secretive about their eating habits. 

While each case is different, Tam shared that there are four common characteristics related to BED. This includes:

· Frequently consuming large amounts of food in a short period of time.

· Often eating very quickly, without being hungry and continuing to eat when already full, to the point of discomfort.

· Experiencing feelings of guilt, shame and disgust after a binging episode.

· Secretive about their behaviour around food, such as eating alone.

It's a disorder that doesn't discriminate. Anyone, of any gender, weight, body size, ethnicity or sexuality can develop BED.

But when you think of someone with an eating disorder, what do you see?

A big part of the misconceptions wrapped around BED is that you can tell by looking at somebody that they’re experiencing an eating disorder.

Not only is this misconception inherently false, but it's extremely dangerous. And it's undeniably had a massive impact on the misdiagnosis and treatment of the disorder, leaving many cases to fall through the cracks for decades.

Take Melani, for example. 

She was incorrectly diagnosed with bulimia at 16. 

It took years for her to get the correct diagnosis, and as she told Mamamia, she was repeatedly dismissed for treatment because her weight wasn’t considered low or high enough. 

As Melani shared with us, the health impact of this misdiagnosis was significant.

"My psychological health has been severely impacted by BED. Not only did I struggle with an eating disorder, but I was also diagnosed with depression, anxiety disorder and OCD," she shared.

"During high school, I struggled to maintain healthy friendships and was highly insecure about who I was. I was constantly in fear of being “caught out” and would go to any lengths to hide my battles."

"Physically, I developed PCOS (some doctors believed this was a result of my very high sugar intake), struggled with migraines, developed a knee injury due to overexercising and also experienced a range of gastro-intestinal issues as a result of laxative abuse."

It wasn't until Melani was 24 years old that her recovery journey started. 

She said after years of stigma and shame, she finally found a psychiatrist and dietician who specialised in eating disorders.

"I also worked with an Eating Disorder Coach in the US, who acted as a major catalyst for helping me understand my brain and develop better habits. I finally learnt how to stop using food as a coping mechanism and battling the vicious cycle of restriction, dieting and binging. I changed my all-or-nothing judgemental thinking, to a more curious mindset which helped me understand the triggers and reasons behind my patterns of behaviour."

Similarly to Melani, Lyndi was another case that went unnoticed and undiagnosed. 

She went through a decade of dieting and many years of binge eating, before eventually identifying her own diagnosis as a qualified dietician.

"I was morbidly obese by the age of 21," she shared. "I was clinically diagnosed with chronic anxiety and I hated myself deeply. Food and how much I was allowed to eat dictated my every thought, and I felt so much hatred for the person I saw when I looked in the mirror. Binge eating controlled my physical and my mental health."

"At 21, I was prescribed anxiety medication, and the doctor — instead of recognising that I had an eating disorder — suggested that I try a diet that his wife was currently having success with. Even in my doctor's office, I wasn't recognised as having a disorder. I was told to 'try harder'.

At the time, BED hadn't even been recorded as an actual eating disorder diagnosis in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders). It wasn't until 2013 that it was recorded as an actual diagnosis.

Lyndi said, "I was already a qualified dietician when it was finally added to the DSM. I read it and it made so much sense to me. I realised this is the eating disorder I have had for my entire life. For me, having a diagnosis helped me feel less shame about what I had."

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A post shared by LYNDI COHEN // Nutritionist (@nude_nutritionist)

"Knowing now that it's the most common eating disorder by a landslide helped me realise it wasn't a problem with me as an individual but there were much greater societal issues." 

"Even with eating disorders today, most will go undiagnosed because when we see someone who is in a larger body, instead of empathising or understanding how they've tried to lose weight and lost weight and ended up regaining it again. When we see someone in real life, we just assume that they just haven't tried hard enough."

The post-pandemic rise of eating disorders.

It's almost impossible to talk about the prevalence of BDE in Australia right now without talking about what kind of impact the pandemic has had on eating disorders across the board.

Because the statistics speak volumes.

Tam said, "Lockdown restrictions, changes in routine, and increased uncertainty, stress and isolation created the perfect storm for eating disorders to develop and thrive."

"As a result of COVID-19, there was an increase in behaviours such as binge eating, as well as an increase in weight and shape concerns, body dissatisfaction, uncontrolled eating, eating to cope and compensatory exercise behaviours."

Since COVID began, the Butterfly Foundation has experienced a significant surge in demand for all services, including Australia’s only national Helpline for eating disorders and body dissatisfaction.

"There was a 63 per cent increase in the volume of total contacts to Butterfly’s National Helpline, compared with the year prior to the onset of the pandemic)," shared Tam. 

"More young people are reaching out and there has been an increase in carers seeking support for their loved ones."

"Body image concerns, depression, anxiety and eating disorder symptoms increased by more than 50 per cent during the pandemic."

So where are we at now with binge eating disorder?

"We anecdotally say acceptance and understanding of eating disorders are 10 years behind that of anxiety and depression. This is even more true for BED, which was only officially recognised as a diagnosable eating disorder in 2013," said Tam.

For things to change, we need to have more open conversations. "This is key in reducing stigma and encouraging help-seeking, and we also need to see weight stigma addressed in all areas, including healthcare settings," said Tam.

"We urgently need people to realise they are worthy of recovery and support, and there's no shame in speaking up about what you're going through."

As Melani told Mamamia: "Binge eating is still so misunderstood because people assume you’re lazy, have no willpower and just like eating for pleasure. They couldn’t be more wrong."

"Some of the toughest, most highly motivated people I’ve met have suffered with Binge Eating Disorder. It’s also not a visible disease. You suffer in silence with little to no physically identifiable symptoms, and the shame you feel as a result of BED is completely overwhelming and life-altering."

Lyndi agrees that we still have a lot of work to do.

"We know that eating disorders are on the rise, in fact, children are developing eating disorders at an earlier age and we have a huge number of people who have an eating disorder and live with an eating disorder but haven't yet been diagnosed. Meaning? They're not getting proper treatment."

"Luckily, I think the tide is turning on diet culture with new generations coming through. They're thinking about food differently and being healthy in a different way, and not sacrificing their wellbeing in order to weigh less. I think we're starting to recognise that health is something that isn't as simple as the measure of your height and weight to get your BMI," she said.

"You can be measured in a myriad of ways — from how much energy you have in the morning to how many serves of vegetables you eat a day, your blood work, your fitness level and how easily you fall asleep at night. All of these things can help form an idea of how healthy someone is."

"I think a lot still needs to change in our medical system to get better at picking up when someone has an eating disorder, and not just dishing out diet advice — it's giving people disordered eating. Going on a diet is actually the greatest predictor of weight gain. And while not everyone who diets ends up with an eating disorder, everyone with an eating disorder started with a diet."

"We have to think about other ways we can support people to be healthy without following diets — whether they're restrictive or whether or not they claim to be a 'balanced, healthy lifestyle' — which is often a diet in disguise."

Above all, both our case studies stress the importance of sharing that if you’re suffering from BED, know that you’re not alone.

Melani said. "Recognise that you can’t do it alone and seek support from trained professionals who understand eating disorders, as well as support groups like those offered at the Butterfly Foundation."

Melani now runs The Wellness Workshop, a holistic wellness provider dedicated to helping improve the mental, physical and emotional health of Australians.

She added: "If anyone tells you that it’s not an illness and you simply ‘have no willpower’, it might be best to rethink your relationship with them. You can be a highly motivated individual with a great work ethic and still suffer from BED. 

"In fact, many individuals who experience an eating disorder have perfectionistic tendencies which make them more susceptible to disordered eating."

"Professional support is essential, and a useful first place to start is sharing your concerns with your GP. You can also search Butterfly’s Referral Database for qualified eating disorder practitioners," concludes Tam.

For help and support for eating disorders, contact the Butterfly Foundation’s National Support line and online service on 1800 ED HOPE (1800 33 4673).

Feature image: Getty