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Helping to fill the gap in eating disorder support

13 HOPES

Rebecca Toms knows first-hand the struggle of being lost in a system after having little to no expert help to navigate her way through her daughter’s eating disorder (ED).

After joining a parent support group, Rebecca was horrified to discover just how many people were being told there was nothing anyone could do for them or their loved ones who were struggling.

Finding this unacceptable Rebecca has made it her mission to help others in her position.

After submitting a petition to parliament on the 3rd of June 2021 advocating for more ED support and subsidy, she has since started a website called WithLoveED – Eating Disorder Recovery Support for New Zealanders.

WithLoveED is a platform designed to have localised information all in one place, that can provide people with support, information, tips on recovery, access to experts as well as a Facebook group for people to share their lived experiences.

Rebecca hopes that others who are struggling don’t have to go searching for information like she did.

WithLoveED was designed to help bridge the massive gap in support that Rebecca feels she and many others like her have missed out on.

Misunderstandings around ED

When the first lockdown occurred Rebecca’s 17-year-old daughter Georgia, suddenly developed a fear of food.

“There are many stigmas attached to eating disorders,” says Rebecca. “Some people think – why don’t they just eat.”

However, it wasn’t about losing weight for Georgia, she was terrified of eating.

She had an irrational fear of food just like others may have of heights or flying and she was simply too frightened to eat.”

 

Georgia recognised something wasn’t right straight away and they tried to seek help.

Georgia’s ED wasn’t picked up by their GP or the psychologist they saw. Rebecca and Georgia spent months being pushed around a system.

It wasn’t until Rebecca spoke to a dietician who had herself recovered from an eating disorder that they began to understand that they were dealing with anorexia.

Rebecca Toms in her Christchurch home

“There is no clear pathway for help,” says Rebecca. “We weren’t even given a care pack with information.”

Despite desperately needing help, Georgia, like many others, was eventually kicked off the waiting list as she wasn’t deemed sick enough.

With EDs having the highest level of mortality of all mental illnesses, this lack of support and help is a frightening experience for sufferers and their family members.

“Imagine being sent home with a life-threatening illness and not knowing how to keep your child alive.”

Rebecca goes on to say that the health care system needs to recognize how serious this is and to catch up with the skyrocketing rise of EDs in New Zealand.

The reality of EDs in New Zealand

It is estimated that 103,000 people in New Zealand struggle with an eating disorder.

Tragically 10% of those will die.

26% attempt to end their life.

Of these 103,000 people a mere 6% will ever get medically diagnosed as being underweight in New Zealand. This means sufferers are constantly being kicked off the waiting list to receive help.

Recovered Living NZ reports that as high as 70% of those with an EDs in New Zealand will not get the help they need.

“Since COVID cases of eating disorders have skyrocketed,” says Rebecca. “Then you are left with no knowledge or insight into whether you are in fact making things better or worse for your child.”

“We are left to fend for ourselves with a deadly illness,” she says. “And one that is completely recoverable.”

In short, Rebecca says that people with an ED and their caregivers can feel hopeless.

“Healing a loved one with an ED can be a lonely road,” says Rebecca. “With conflicting information and confusion about where to go and whom to talk to.”

“This is why WithLoveED is so important. Knowledge is power.”

Rebecca goes on to explain that there is no black and white treatment for those suffering from EDs.

“It is a unique experience for everyone, which makes it so much more important to be able to talk to experts for free and to get tips from those who have recovered.”

Funding for EDs hasn’t increased in New Zealand since 2013, aside from the $3.9 million boost in this year’s budget which is to be spread over four years.

Rebecca welcomes the boost, but says, “we can’t stop there. So much needs to be done to ensure timely, accessible, and free expert care is available for anyone challenged by an eating disorder, and support for their families.”

It is volunteers like Rebecca who are providing the bulk of support to those in need.

“It’s time for New Zealand to wake up and see this as serious,” says Rebecca.

“Recovery is possible. We just need early intervention and effective help so those suffering can heal and live their best lives.”

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For more information:

Visit Withloveed

13 HOPES

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