Breaking down the stigma of eating disorders

By Tayla Larsen

Tracey Ramsden repeatedly told herself she was fine. She was in denial about suffering from anorexia. The then 48-year-old even continued her daily exercise routine despite having nothing to fuel her body. In her mind, though, everything was fine, until her fragile frame started to break down. On a casual walk with a friend Tracey’s body simply gave up, causing her to face plant into the cement path.

“You think you’re ok until something like that happens and your body’s telling you that’s enough,” she says. “It’s shutting down because it’s got to do something.”

Tracey is just one person who makes up the 9 per cent of Australians who suffer from an eating disorder. The National Eating Disorders Collaboration revealed more than 913,000 people suffered from the illness in 2012 and that the mortality rate for sufferers is the highest of all psychiatric illnesses.

Despite the alarming mortality and diagnosis rates, people are still not seeking help. This is largely accredited to the stigma surrounding eating disorders which experts say dates back decades.

In June 1932 the Brisbane Courier briefly discussed the symptoms of bulimia and anorexia. Even then, bulimia was falsely viewed as being linked to insanity and even intestinal parasites. And anorexia was merely labelled as a “loss of appetite”.

Now explanations of the illness have evolved with the Parliament of Australia broadly defining it as “being characterised by disturbances in eating behaviour”. This branches into anorexia nervosa, bulimia nervosa and binge eating disorder.

Despite knowing how to identify and categorise the various disorders, stigma still surrounds sufferers. Many people within the community are quick to place the blame on them and can’t understand why they require treatment. The Butterfly Foundation chief executive officer Christina Morgan said in Parliament people have an average nondisclosure time of 10 years due to this misconception.

“Too many people still see it as people who do not know how to eat properly, who eat too much or too little and they say ‘get on with it and fix it up’,” she said.

It’s not this easy though.

Experts say it’s more in depth than someone not eating and it is as much of a mental illness as a physical one. However, like many diseases a person’s first point of contact is usually their local GP. Often they refer patients onto other medical professionals. But they are not as equipped to cater for these disorders as well as the public would think.

Part of the reason general practitioners are unable to treat patients is because eating disorders only cover a small percentage of their learning at university. While simple screening tools and guidelines are distributed to advance their knowledge on treatment plans, there is only so much these resources can provide.

Sports dietician Kate Feely says not every resource applies to every patient and their needs.

“Something like eating disorders can be very different to working with someone who has kidney issues or celiac disease or something like that where there’s

pretty clear-cut guidelines to follow in terms of different recommendations for them,” she says. “I guess with eating disorders … every person can be so different.”

The consensus within the broader medical community is that a team approach, tailored to an individual, needs to be adapted. Researchers from Kagoshima University Hospital found in a study that multi-disciplinary action to treatment is highly effective. Like Ms Feely, fellow dietician Justine Urbahn agrees that recovery requires this team approach that extends beyond the physical side of the illness.

“I don’t think that a dietician is capable of curing a person with an eating disorder because it is a psychiatric illness, a mental health disorder, and it certainly needs the input of psychologists and possibly a psychiatrist as well if medication is required,” she says.

This team should also include the sufferer’s family or significant others. The Royal Australian and New Zealand College of Psychiatrics said family based treatment played an important role in the recovery and intervention process, especially among young people. It is also recommended to educate and guide the family as much as possible to increase the sufferer’s chance of a full recovery.

After some failed attempts at recovering on her own at home, Tracey sought family involvement. She says it is what ultimately got her through the challenging recovery process.

“The hospital did provide some help but it wasn’t until I had the intervention or some support at home,” she says. “When I was coming home from hospital I’d be here on my own, well with my sons, and had no support and I’d end up doing the same thing.”

Tracey was in and out of inpatient care for two years. During her regular stays she felt like a failure who had lost all control. Often she would compare herself to those being discharged and lie about her condition in a desperate bid leave her hospital bed for the comfort of home.

Her time in hospital consisted of routine feeding, medication and group treatment sessions. However, the members of these groups suffered from various types of mental illnesses and the therapy was not specifically targeted at treating eating disorders. This goes against clinical practice guidelines which aim for treatment to be suited to an individual and mental health care which enhances self-management.

This is a common theme.

According to the Butterfly Foundation, there are gaps in the continuum of care delivered to eating disorder patients and as of 2014, not one health district was able to provide a full continuum of care. This slows down to the recovery process as patients are unable to access certain healthcare providers and levels of care.

EndED director Mark Forbes says the strict medical approach is outdated and treatment requires a multi-disciplinary facility.

“The medical profession, the way it’s structured, they do not get it and they are not successful in treating it as a standalone profession,” he says. “Should they be part of the team? Definitely. But you need to form a team around the sufferers, the parents and carers to actually get results.”

Mr Forbes and his wife Gayle are in the process of building a residential facility for those with eating disorders. Positioned on 10 acres in Mooloolah Valley, the live-in facility will take a personalised approach to treatment and will include psychological, medical and holistic therapies. Programs similar to those used in the United States will be followed due to their high success rates. It will be the first of its kind in Australia. Mr Forbes says opening a residential facility in the country is well overdue.

“In the United States, there’s quite a number of live-in residential facilities for eating disorders and we know families who have sent their children overseas to get treatment,” he says. “It’s successful but only the rich can afford it.”

In 2012 the median out-of-pocket expenses for individuals with eating disorders was estimated at $4375. Currently, EndED is appealing to the Federal Government to have the facility covered by Medicare. Having the treatment covered by Medicare would ease the financial burden many families of patients are currently facing.

Wellness coach Cathy Johnson Campbell says parents are sometimes forced to resort to measures which have not previously shown results for their child.

“Whether they’ve been suffering for a short time or a long time, the financial burden on the family is incredible and the only thing they can afford to do anymore is what’s going to be free and that may be to put the child in hospital for a few days,” she says.

It’s not just affecting these families though. Billions of dollars are wasted each year across the health care system. In 2014 the cost of eating disorders totalled $19.8 billion with 88 per cent of this figure resulting from lost economic productivity as patients were unable to participate in the workforce due to their condition. It was also estimated that covering the costs of those diagnosed in 2014 over the next decade would be $27.8 billion. Providing optimal treatment would only cost $2.8 billion over this time.

In the 2017- 2018 budget, the Federal Government allocated an additional $15 million to funding mental health research as well as $80 million for psychosocial support for citizens who do not qualify for the National Disability Insurance Scheme. It is uncertain how much of this sum went towards eating disorders, however the Turnbull Government provided an extra $3 million specifically for the cause in September 2017.

While this figure is a mere drop in the necessary funding needed, it is a step in the right direction. Australians are slowly breaking down the stigma attached to eating disorders, so that fewer people, like Tracey, can stop telling themselves they are fine and instead seek help.

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