When she was admitted as an inpatient to Southlake Regional Health Centre’s eating disorder program for children and adolescents, S.M.'s* 15-year-old daughter weighed just 60 pounds.
"We almost lost her," the mother said.
At the time of her admittance, the teen (whose name has been withheld to protect her privacy) had anorexia nervosa and was on a nine-month outpatient waitlist after being referred to the program by her family doctor.
Before she was placed on the waitlist, she spent several months both as an inpatient and outpatient at SickKids in Toronto.
Because her daughter was "a second timer" — someone previously admitted to hospital for an eating disorder — the nine-month wait was the result of her case being "rushed," she said.
"There is an extensive waiting list for access to the outpatient services as part of this program, primarily due to the need to prioritize access for patients coming out of acute care who require more immediate follow-up," said Lindsey Furlanic, communications strategist, corporate communications at Southlake.
S.M's daughter spent five months in one of only two available recovery beds for emergency care — she still had four months to go on the outpatient waitlist.
"The positive is that the team on the floor was excellent. . . however, there's not enough beds, there's not enough workers," she said.
As of February 2022, Southlake was able to increase its eating disorder program's inpatient beds from two to six due to funding, according to Victoria Freeman, a social worker for Southlake's young adult eating disorders program.
The Newmarket hospital is one of only eight inpatient eating disorder hospital programs covered by OHIP and months-long waitlists are not uncommon at any of them.
The National Initiative for Eating Disorders reports that eating disorders have the highest death rate of any mental illness, with one in 10 Canadians dying from their disorder, yet, according to advocates like Wendy Preskow, founder of the National Initiative for Eating Disorders (NIED), research and resources are grossly underfunded.
Far more Canadians suffer from — and die from — eating disorders than most other mental health disorders, Freeman said.
In December 2021, the province announced $8.1 million in funding to specialized services for children and youth diagnosed with eating disorders and $11.1 million annually for all ages.
What makes eating disorders unique among mental health disorders is that they "aren't just mental health illnesses," Freeman said, "They're mental health illnesses that have significant physiological consequences."
Eating disorders are "the bottom of the totem pole" when it comes to funding, Preskow said.
Preskow knows the frustration of long waitlists and misunderstanding surrounding the disorder. She spent decades watching her own daughter struggle.
"Our daughter has been climbing her mountains with her eating disorder for over two decades now. As bad as treatment is now, 20 years ago it was even worse."
Ten years ago she founded NIED to advocate for individuals and families suffering with eating disorders.
The non-profit organization provides educational resources information and assistance related to the prevention and treatment of eating disorders and related mental illnesses in Canada.
Families who find NIED through online searching are usually already desperate to find the resources and help they need, so she responds immediately because she knows what it is like to be desperate for answers.
"It's just the most agonizing experience that we went through and I don't want anybody else to go through that experience. . . to talk to these families and try and relieve the stress and the agony and sheer desperation — because if people reach out they are desperate. Unfortunately it's a world-wide issue, help is so minimal."
Murray first noticed symptoms in her daughter at age 11. What began with eliminating food groups turned into hospitalization by age 12.
A 1995 study BY WHO found that in addition to the full syndrome eating disorders, one in four adolescent females in Ontario aged 13 to 18 reported engaging in at least one symptom of an eating disorder with 25 per cent of male and 30 per cent of female children, as young as aged 10 to 14, having dieted to lose weight.
Many people don't believe eating disorders are a mental health issue at all, said Freeman, and there is a common belief that individuals who suffer with it are choosing to do so.
"People think it's body based and volitional — kind of a diet gone wrong — and that is not the case whatsoever," Freeman said.
Other misconceptions are that the disorder only affects women and girls or is strictly about reducing food intake or being underweight.
Not so, said Freeman. Although the vast majority are those with weight that is too low for their height, the media often misrepresents what eating disorders look like and gives a false impression of who struggles with them.
"Eating disorders affect people of all shapes and sizes and ages and cultural backgrounds, races, religions and socio-economic statuses, genders — there is nobody who can't be impacted by an eating disorder."
Those struggling often don't think they have a problem, so they don't seek help. Studies show some wait more than five years before seeking treatment.
"But I'm eating so I can't have an eating disorder" is something Freeman said she hears often from clients, along with "my doctor told me I'm fine."
"That's a problem because that's a barrier to accessing care. . . that stigma really gets in the way. It's dangerous because it stops people from accessing care and we know from research the faster people can access care, the more likely they are to make a full recovery and the longer it takes to access care the more severe and entrenched the symptoms can become and the harder it is for folks to recover. "
Preskow said her organization has been to Ottawa 17 times to speak to the Mental Health Commission of Canada, Canadian Mental Health Association, Health Canada, as well as to numerous provincial organizations to bring awareness to the issue and lobby for funding.
"You name it, we met with them," she said, but there is just not enough government funding.
"Community programs here have stepped up to the plate, as far as really going above and beyond their mandates to accommodate what should be happening in publicly funded places."
S.M's daughter has been an outpatient at Southlake since 2021 and the mother can't say enough good things about the program's staff.
"The positive is there are some really good programs and with what I've dealt with at Southlake, they have been really good" and very individualized in terms of the care they provide.
While her daughter's health has taken some scary turns, S.M. is hopeful that her age and the medical support she is receiving will enable her to eventually recover from the "lifelong journey."
To commemorate its 10-year anniversary, NIED launched a campaign with the goal of raising $10,000. Donations can be made through its GoFundMe page.
*Editor's Note, July 11, 2022: The full name of a source has been removed from the article to further protect the identity of her daughter.
