“It’s as if an alien has come and replaced my daughter,” Deanna says.
Warning: This article contains content about eating disorders that may be distressing for some readers.
Everything changed at the beginning of last year when the 11-year-old developed an eating disorder.
“This is a child who is a particularly gentle, generous, kind, sensitive human being. But when she’s terrified about food or if she’s stopped from exercising, she can turn absolutely demonic.”
“It’s really scary. It’s just a side of her that we never saw [before].”
Seated at the dining room table of her family home in Melbourne, the mother of seven appears exhausted. At times she’s on the verge of tears.
“It’s a child who would rather die than eat.”
Her daughter, Esther, has been admitted to hospital 20 times in 12 months. Sometimes she’s had to be held down by security guards while being fed through a tube.
Esther in 2019.(Supplied)
The hospital has confirmed this does take place with children who are at risk of dying without the nutrition.
When she’s not in hospital, food is at the centre of almost every interaction Deanna now has with Esther.
The day begins desperately trying to convince her to eat breakfast.
“It sounds so ridiculous. ‘Why can’t you feed your child?’ Even on the ward, some of the consultants, they say, ‘Look, she eats in hospital, just take her home and feed her,'” she says.
If you or someone you know needs help:
Butterfly National Helpline — 1800 33 4673Eating Disorders Families Australia — 1300 195 626Eating Disorders Victoria — 1300 550 236Eating Disorders Qld — 07 3844 6055Professionals Credentialed in Eating DisordersLifeline on 13 11 14Suicide Call Back Service — 1300 659 467Kids Helpline — 1800 55 1800MensLine — 1300 78 99 78
“It’s not that easy at all.”
There can be hours of screeching and extreme behaviours that are taxing on the entire family.
The battle is repeated with each of the three meals and three snacks she is meant to eat in an attempt to regain some of the weight she’s lost.
Between each meal, Deanna is constantly trying to stop Esther from exercising.
“After every meal, she has to exercise. She goes around the block and we can’t contain her. We put locks on all the doors … that was a disaster.”
“We ended up with broken windows and her running away. Police chases. It was just absolutely terrible.”
Deanna trained as a doctor but knew very little about anorexia nervosa until her own child was severely affected.
Deanna says for her daughter, every meal is a struggle.(ABC: Four Corners/Louie Eroglu ACS)
She’s had to confront her own misconceptions.
“I thought this is a disorder that affects vain young women who want to be thin. They do it on purpose.”
“That couldn’t be further from the truth. No-one chooses anorexia.”
Deanna doesn’t understand exactly why her child has developed an eating disorder but she believes stress may have contributed.
“There are various factors. We do have a very disabled child in our family and that’s stressful … also COVID and being away from her friends for a very long time.”
It was around that time that Esther started exercising more.
“She was doing obsessive amounts of skipping. Even though I’m a doctor it didn’t twig that that was an eating disorder.”
One million Australians
More than 1 million Australians are estimated to have an eating disorder at any given time.
Eating disorders were already on the rise before the pandemic hit. Now numbers have exploded, especially for young people.
Some public hospitals have recorded between an 80 per cent to 104 per cent increase in children with anorexia in the past three years.
Anorexia is also among the deadliest of all mental illnesses.
But Australia’s health system is appallingly underprepared for dealing with this crisis.
Sara’s ‘monster’
Jenny Hosemans’s daughter is deteriorating in front of her. She feels helpless.
“We don’t have any support … we’re left with nothing,” she says.
Sara has been discharged from hospital again, but is unable to get the services she needs.(ABC: Four Corners/Louie Eroglu ACS)
Sipping a cup of coffee outside her modest cottage in regional Victoria, she explains how terrified she is of finding her child dead.
“I come home thinking, ‘Is she going to be collapsed on the floor or is she going to be OK?’. Because she’s so unwell, that can easily happen.”
“She could die from it.”
Sara, 23, has severe and enduring anorexia nervosa. The past 10 years have been a revolving door of hospital visits.
“It’s just a never-ending cycle,” Jenny says.
“She gets sent back home, [I] keep trying to get her to eat, and then she starts restricting and loses the weight and gets unstable and it’s back into hospital.
Jenny Hosemans fears for her daughter Sara.(ABC: Four Corners/Louie Eroglu ACS)
“I think she’s only been home two months in the last two years.”
Sara was last discharged from a specialised eating disorder unit at a Melbourne public hospital in January.
“There was no family meeting. They didn’t give us a meal plan either … there’s no communication.”
Jenny says Sara had only just become medically stable when she was discharged.
Loading…
There are only 15 public hospital beds dedicated to eating-disorder patients in the whole of Victoria.
New South Wales has only 17 beds, South Australia has six and Queensland has five. The other states and territories have none.
Jenny’s postcode is a major obstacle in finding her daughter help. They live in a small country town on the border of Victoria and New South Wales. There are no specialised eating-disorder services nearby.
Jenny has applied through the NDIS for support, but has been knocked back twice.
Sara’s falling through a cruel gap in the health system.
At the moment, she isn’t considered sick enough to be in hospital but is too underweight for an outpatient program.
Sara’s been told she needs to gain weight — more than she was able to in hospital over three months — and prove she’s stable to be eligible again.
For Sara, who likens her eating disorder to a “monster”, it’s not as simple as just eating.
Sara sometimes uses art to express how the eating disorder feels to her.(ABC: Four Corners)
“It’s so much more than just the actual food. For me, when I have food, there’s so much guilt and shame and anxiety around it. That doesn’t just go away if you eat the food,” Sara says.
At times Sara feels defeated and questions the point of trying to get better.
“That gap of where I am now and where I need to be to access those programs is so big, and it just feels at the moment quite impossible to reach that.”
She has been rapidly losing weight since leaving hospital.
“It’s really scary,” Jenny says.
“It’s an illness that there’s no end to. You don’t know when they’re going to get better or whether they’re going to recover, or what’s going to happen.”
‘Now there’s nothing I can do’
Faye Hollow lost her daughter Caitlin to anorexia nervosa in December. She was 30.
“The only way I can put it is that she was just a skeleton with skin, and that’s it. That’s all she was. And she knew it but couldn’t stop it.”
Faye says her daughter should’ve been given more psychological support in hospital.(ABC: Four Corners/Louie Eroglu ACS)
Packing boxes are stacked side by side in Faye’s emptied house in south-east Melbourne. She’s sold, but can’t decide where she’ll move next.
“It’s not a home anymore,” she says.
“I feel that I have nowhere. I don’t know where to go.
“For 16 years I’ve looked after Caitlin, and now there’s just no Caitlin.
“I don’t have to take her to the doctor. I don’t have to ring the doctors, or the hospitals, or anything like this anymore.
“And it’s not like I enjoyed it. I hated it, watching her destroy herself the way she did, but there was nothing I could do. And now there’s nothing I can do.”
Inside a box of her daughter’s possessions, there are diaries filled with disturbing artwork and handwritten journals that Faye promised Caitlin she would never read.
On a loose piece of paper, she’s scrawled the words “I hate myself”, “weak” and “useless piece of s***”.
In high school, Caitlin was a talented basketballer.(ABC: Four Corners)
Another piece of paper arrived the other day — her daughter’s death certificate. Caitlin’s cause of death is recorded as “severe and enduring eating disorder 16 years”.
After spending half her life in and out of hospitals, Caitlin decided to stop all treatment during her last admission.
“She just looked at me and she said, ‘Mum, I’m sorry. I’ve taken the end-of-life pathway.'”
Faye says she doesn’t believe Caitlin gave up on herself.
“She gave up on the system. The system is broken. It’s so broken.”
Hospitals almost exclusively focus on weight gain and the physical consequences of the illness.
Faye says they should’ve provided more psychological support.
“The pathway Caitlin took, that was the only way she could see out. But the pathway I see is that if she had have got more help mentally … and try to do something with the brain prior, rather than waiting on her starve herself to death.”
“They shouldn’t have to die of eating disorders. They just shouldn’t.”
‘The really hard part’
Federal Health Minister Mark Butler admits the system is in “crisis”.
“I completely understand that frustration, particularly from the perspective of families who are living this every day, living the pain, living the fear of what’s happening to their child or their adolescent.”
The former federal government allocated $56 million to build six residential centres. None of them are even close to opening.
Mr Butler says he and his state counterparts are trying to expand services.
“We know we need to do better and we’re focused on it,” he says.
Sara likens her eating disorder to a “monster”.(ABC: Four Corners/Louie Eroglu ACS)
In the meantime, Sara and her mum Jenny are taking it day by day.
When Sara thinks about her future, she imagines a time when she can move out of home, finish her studies, get a job, live without worrying about calories and exercise.
“I think it’s possible … it’s just getting there that’s the really hard part.”
Watch Four Corners now on ABC TV and ABC iview.
Posted 26 Feb 202326 Feb 2023Sun 26 Feb 2023 at 7:11pm, updated 27 Feb 202327 Feb 2023Mon 27 Feb 2023 at 10:15pm
