The stress of dealing with an eating disorder in a family is “massive”, Ōamaru woman Sarah Rowland says. (4-minute read)

“It’s huge.

“We’re talking about families that are under extreme distress, because they have a loved one with a really, really serious, potentially fatal illness,” she said.

So when Sarah, and two other North Island parents found themselves in this position more than four years ago, they decided to form their own support group.

The trio had previously connected through an online international support group, she said.

“This makes such a difference when you are feeling overwhelmed . . . and we didn’t have the same platform in New Zealand."

Together they started a closed Facebook page, and now support about 430 families. 

“With almost any other illness, you have wrap-around care. You have an illness identified, and your GP will refer you down a health pathway to a specialist, and to support organisations or services.

“You get a whole wrap-around level of care for the family who are supporting the loved one with the illness.”

Eating disorders are like the “less than poor, second cousin” of the mental health sector, which is shocking for an illness which has the highest mortality rate of all psychiatric illnesses, she said. 

“It’s hard enough to access support for a person and their family/whanau within general mental health, but there is pretty much nothing for eating disorders. We wanted to start a change in this.” 

The group was initially for family members and immediate carers supporting someone with an eating disorder, but that had now “expanded massively” to provide resources across the sector - from sufferers through to connected organisations and health professionals.

About a month ago, EDCS had its application approved to become a charitable trust.

A core committee has been formed and a website is being developed with the assistance of a volunteer.

There is also wider social media presence, including a public page on Facebook, to complement the private carer page, which Sarah described as a “friendly and totally confidential environment”.

EDCS has a new chairperson, Donald Irvine, who is a co-founder and former executive committee member of Eating Disorders Families Australia and chairperson of the Temperant-Based Therapy with Supports Committee. He is highly experienced and well-regarded in the sector, Sarah said.

“We are incredibly lucky and grateful to have him help us to form our framework and assist EDCS in becoming established as a national charity.”

The organisation shares clinical and professional specialist resources and training, and consults and connects on an international level, with some of the world’s most recognised and eminent specialists. 

Experienced parents are also at hand to offer their experiences and advice on what has worked for them and what hasn’t.

“It’s also there as an information share of help: ‘where do I find X, Y, Z? What’s the health pathway? What do I do here?’,” Sarah said.

The latest statistics, released in February this year, in Australia, identified 22.37% of adolescents as having a diagnosable eating disorder. However, that is only the most serious, and others go undiagnosed, she said.

The percentage is higher in females (between two and three females to one male) because of the genetic makeup of the illness, and it is more common in neurodiverse populations, a fact which is largely overlooked.

In elite sports, the statistics are “blown out of the water”, with a fairly even split between males and females, and males are often completely neglected and undiagnosed, she said.

“And what are we good at in New Zealand, and what do we promote in New Zealand? Sports. 

“We have . . . to be incredibly mindful that we’re taking care of our young people, who we’re placing under quite extreme pressure to perform, leaving them at high risk of short and long-term injury and health issues.

“It’s really important for coaches and parents to have regular and up-to-date education in sports dietetics and eating disorders,” Sarah said.

“We have to look carefully, and watch with interest, anyone who starts to drop off their performance, starts under-achieving - you’re seeing potential signs of training and not fueling up afterwards.

“Fueling up, we’re talking about, you know, most kids will absolutely kick-in and grab a couple of muffins after doing hard-out training. If you look at someone who either doesn’t - or they say, ‘no I’m fine with a couple of carrot sticks’, you have an issue immediately. That’s a red flag.”

Sarah said her volunteer role with EDCS was more than full-time, and one of the biggest time consumers was government advocacy.

“What we have discovered is there is such low awareness of the effects of eating disorders on a cross-sector basis. And there’s a lack of coordination and collaboration between sectors to share this information, to allow good, strong, robust, positive progress in making changes.”

By becoming a charitable trust and registering with the charities commission, the group can apply for grants and funding and accept donations, to help provide more support, education and training for carers..

When the website is complete, it will provide access to resources such as webinars and supportive materials, along with a section for health professionals, as well as sufferers themselves.

“We’ve seen a massive escalation in the number of requests from sufferers, because there’s very little support for them. So we will also have an area populated with resources for them,” Sarah said.

Having lived experience support is essential for families. Without it, it is “incredibly hard” to understand how difficult it is to be in the situation of caring for someone, she said.

“No one is trained to cope with this as a parent, and it literally tears families apart.”

People can be any size, shape or weight and still have an eating disorder, and there is a close connection between anxiety, depression, post-traumatic stress and obsessive compulsive disorders. 

It is essential there is a change in the perceptions of what an eating disorder is, Sarah said.

“The ones we hear about regularly, like anorexia nervosa, are actually only a small percentage of eating disorders.” 

Surprisingly, the most common eating disorder is a binge eating disorder. A person in a larger body with an eating disorder might be given weight loss and dietary advice, instead of receiving the treatment management they actually need to recover, and can further exacerbate their condition, she said.

“It is actually a slightly different approach, as opposed to giving weight loss advice. It is completely manageable and recovery is completely possible with the right recognition, diagnosis and specialist management.”

To access Eating Disorder Carers Support NZ visit the public Facebook page, or email [email protected].