eating disorders are a mental illness, not a choice
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health officials have seen a jump in eating disorders, but waitlists are woefully long.
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anne* remembers going to school in grade four, opening her lunch pail, and eating two saltine crackers, leaving the rest of her lunch untouched. this is her earliest memory of restricting food and for years, she silently suffered with an eating disorder, one she became a master at hiding from her coworkers, family and doctors. at 28, anne was diagnosed with anorexia nervosa, quickly followed by her first heart attack a month later — one of the leading causes of death among people with anorexia nervosa, followed by suicide. up until this point anne says she was living in denial, convinced that nearly two decades of restrictive eating was completely normal.
roughly one million canadians live with an eating disorder, an umbrella term for several diagnoses including anorexia nervosa, bulimia, avoidant and restrictive food intake disorder, binge eating disorder and other specified feeding or eating disorder. this is likely an underestimate — there is no national database that tracks eating disorders, and research suggests people will struggle for an average of eight years before seeking or receiving treatment.
it’s no secret that mental health is grossly under resourced and underfunded, but experts say the eating disorders landscape is especially tragic. this likely has something to do with the fact that eating disorders have historically been considered a choice, one that affluent women are seen as more likely to make. and while research has deemed this incorrect — eating disorders are a mental illness that don’t discriminate — a survey done in 2015 found 40 per cent of canadians still consider eating disorders to be a choice.
it’s not entirely clear how someone develops an eating disorder, but many experts consider onset the perfect storm — a combination of psychological, genetic and biological factors can be at play, compounded by social pressure and norms. what is clear is that the pandemic is fuelling eating disorders, with many programs across the country reporting a significant uptick in people reaching out for services.
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jillian walsh is a registered dietitian in london, ont., and says her team has gone from seeing about 10 kids a week prior to the pandemic to around 50 a week.
the reality is covid-19 has simply magnified issues that have existed for decades in eating disorders — long waitlists, limited resources and unclear paths to treatment.
funding differences are ‘staggering’
dr. kathryn trottier leads the eating disorder program at toronto general hospital and describes the discrepancies in research funding between eating disorders and other mental illnesses as “staggering.” eating disorders are the deadliest mental illness, yet government funding for eating disorders research in canada equates to about two per cent of what’s allocated to schizophrenia. the result is incremental progress in terms of understanding eating disorders and improving treatments.
in canada, publicly funded eating disorders treatment is delivered by multidisciplinary teams and typically falls into three categories. outpatient is the least intense and is offered through an eating disorders program with weekly appointments. in day treatment, patients live at home but spend most days in hospital where they receive therapy and eat their meals. the most intense form of care is inpatient, where patients stay in hospital for treatment. every program varies slightly, and there are different programs for children and adults, the former usually involving family-based therapy.
but access depends largely on where you live and how sick you are. in toronto, there is no publicly funded outpatient treatment program for adults, which means only those at the severe end of the spectrum have somewhere to go. and even then, spots are limited — the toronto general hospital program has 10 inpatient beds and roughly 17 spots for their day program (since the pandemic the day program is being offered virtually, so trottier describes it as more of an intensive outpatient program).
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for those needing intensive treatment, waitlists can mean the difference between life and death. many people end up in emergency rooms where they’re stabilized before being discharged with no option but to continue waiting for a program spot to open. those seeking outpatient treatment are often left to scrape together their own recovery resources by finding psychiatrists, social workers and dieticians in the community.
“a lot of publicly funded treatment [in ontario] is intensive for people who are very ill, and it can be more difficult to locate services for people who are more mildly or moderately ill,” says trottier. “many people come to us for an assessment and these intensive treatments aren’t what they need or they’re not able to do them because they work or are caring for children, and they’re left with having to pay out of pocket.”
wendy preskow is no stranger to how overwhelming the system can be. her daughter has battled anorexia nervosa for over 20 years, during which time she has been in and out of hospitals across the country and accessed private resources in the community. in 2017, preskow took her daughter to the emergency room more than 20 times to be rehydrated. she describes eating disorders as something that can destroy marriages and plunge families into bankruptcy.
reflecting over the past two decades, preskow says there seems to be more awareness today about eating disorders. but since co-founding the national initiative for eating disorders in 2012, she’s still on the receiving end of countless calls, individuals and families desperately trying to wade through the murky waters of finding help.
“in many ways, it still feels completely miserable, and i don’t know that much has changed,” she says.
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the eating disorders program at st. joseph’s healthcare hamilton is an outpatient program with a waitlist of nearly eight months, with referrals last month up 58 per cent from february 2019. a major gap in the system according to clinical program lead dr. michele laliberte is the ability to coordinate care between different programs. many people living with eating disorders have other conditions that make recovery challenging which can include anxiety, depression, self-harm and trauma. sometimes, certain conditions exclude people from being eligible for eating disorder programs.
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the goal, says laliberte, is to provide treatment in an order that makes sense, so the person is equipped with the right tools for recovery. say, for example, a person with an eating disorder was also self-harming. sometimes the best course of action in this scenario would be to undergo dialectical behaviour therapy (dbt) either simultaneously or before eating disorder treatment.
“ideally, we’d smoothly transition someone to the dbt program, and they could then smoothly transition that person back to us when they’re ready for eating disorder treatment,” says laliberte.
but the waitlist for the dbt program at st. joseph’s healthcare hamilton is nearly two years, which means they simply don’t have the capacity to make this model work.
“the big, big problem is waitlists; we just don’t have enough resources to handle the number of people who are needing care,” says laliberte.
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amanda* first went into treatment for anorexia nervosa as a teenager and continued on with adult programs for a couple of years. by the time she was 24, one of her kidneys had shut down and her liver was failing. hearing this scared amanda, and after leaving treatment she stayed well for 12 years with support from a psychologist in her community. but a traumatic event caused her eating disorder to resurface, and she re-entered an adult program this year at the age of 38. for anne, treatment has been chronic. she’s been in and out of inpatient programs for the last 10 years, and says her symptoms usually come back within weeks of leaving a program.
these stories highlight the problem with inpatient treatment according to psychiatrist dr. leora pinhas — patients come out still sick and the result is a revolving door of treatment.
“we teach patients how to eat in a hospital where their food comes premeasured in trays; we don’t teach them how to eat at home at a sunday night dinner where grandma is cooking and there are kids running around and there’s food you’ve never seen before,” says pinhas. “and then we’re shocked when they can’t do this. they relapse and then we send them back into the same program over and over and expect a different outcome.”
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pinhas has worked in eating disorders for more than two decades and spent the better part of her career in the public system before moving into private practice in 2018. her shift to private practice was largely because she lost faith in the system — she believes almost everything needs to change when it comes to eating disorders, from the way people are diagnosed all the way to treatment options.
pinhas says treatment should be provided as a wrap-around service in the community for as long as a person needs to get better. she is also a believer in outpatient programs, but these are few and far between in canada. pinhas says any hospital that has a psychiatric unit should offer an outpatient program, rather than have people rely on specialized eating disorder programs.
“every time there’s more money, it goes to inpatient programs because it’s urgent, that’s life and death, and we tend to never get around to funding anything in the community,” she says.
compounding the problem is how heavily stigmatized eating disorders are, even within the healthcare system, which pinhas says is partly because these illnesses predominately affect women. this isn’t to say males don’t suffer from eating disorders — it’s estimated that around 10 per cent of people living with an eating disorder are male. this is likely an underestimate, as males are often driven by a desire for muscularity rather than thinness, which is easier to hide under the veil of self-discipline and fitness culture.
but research shows there are huge disparities between the way women and men are treated in the healthcare system, so a disorder that disproportionally affects women is more likely to fly under the radar and be riddled with stigma.
anne says it’s surprising how little people understand about eating disorders. she’s lost a lot because of hers — both of her children were taken by child services, she’s had two heart attacks in the last two years and she hasn’t worked in a decade. she volunteers to keep herself busy as she sits on yet another waiting list for treatment, but her eating disorder still largely dictates her life.
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since leaving treatment earlier this year, amanda says she’s doing well and enjoys spending time with her daughter. but the internal battle never goes away.
“i fight with myself every day to make myself eat because part of me thinks i’ll get fat from eating something but the other part of me knows i need to eat it,” she says. “i wouldn’t wish this on anyone.”
*names have been changed to protect identity.
if you or someone you know is struggling with an eating disorder, you can visit the national eating disorder information centre, which has information on where to find help. you can also connect with resources by visiting the national initiative for eating disorders.
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