the way i see it: our system is failing youth with eating disorders
once a person getting care for an eating disorder in hospital turns 17 years old, they are released into the world without the infrastructure and protection they need to recover, says natalya anderson.
6 minute read
lack of support when out in the world can be difficult for eating disorder recovery. (getty)
this story contains details of sexual abuse and disordered eating which may be disturbing to some readers.
i was nine years old when i first began to restrict my eating. at the time, i was being sexually abused by a family member and by one of my babysitters. being a part of that made me feel physically sick — i would vomit or have diarrhea. restricting food became a way to avoid the sick feeling in my stomach, and by the time i was admitted to the hospital for sick children’s (sick kids) eating disorders unit at the age of 14, i had begun to associate how thin i was with how safe i felt. this association developed into a system that i thought would allow me to survive the abuse: to avoid reliving the feeling of being molested, i needed to avoid feeling sick; to avoid feeling sick i needed to avoid feeling full; and to avoid feeling full i needed to restrict my intake. from my perspective, if i was underweight, my system was working.
i was an inpatient and outpatient on the ward for four years. during an arts and crafts activity event for christmas, i remember a group of mothers gathering around me and some of the other anorexic and bulimic children and pointing to the cancer patients. “take a look at the children over there,” one mother said. “they don’t have a choice. you do.”
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this kind of “helpful” reminder of how “selfish” we were was a common occurrence, and it was something the other children with eating disorders and i talked about in group therapy every day. every kid i met on the ward had been sexually, physically, emotionally, or verbally abused by a family member or caregiver — some as young as eight years old. many of us had an adjacent mental health disorder that we were taking medication for. yet, despite these formal clinical diagnoses and our collective hospitalizations, we were deemed by the outside world as having chosen our eating disorders.
and as long as we live in a society where we continue to see eating disorders as a choice, it seems inevitable that nothing will improve.
types of eating disorders
there are four clinically recognized eating disorders in canada. these include anorexia nervosa, characterized by self-induced starvation, or similar behaviour that interferes with maintaining a healthy weight; bulimia nervosa, which involves bingeing and purging; avoidant and restrictive food intake disorder, which sees a person limit and restrict what they eat to types of food, but does not involve the body-shape “fat” fears that anorexia includes; and binge eating disorder, which involves periods of bingeing food and feeling shame afterwards.
there are four clinically recognized eating disorders in canada. these include anorexia nervosa, characterized by self-induced starvation, or similar behaviour that interferes with maintaining a healthy weight; bulimia nervosa, which involves bingeing and purging; avoidant and restrictive food intake disorder, which sees a person limit and restrict what they eat to types of food, but does not involve the body-shape “fat” fears that anorexia includes; and binge eating disorder, which involves periods of bingeing food and feeling shame afterwards.
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approximately 1,000,000 canadians have been diagnosed with an eating disorder, and close to 2,000,000 have sufficient symptoms for an eating disorder diagnosis. eating disorders are mental health illnesses, with a reported 10 to 15 per cent mortality rate, the highest overall mortality rate of any mental illness. children and adolescents are increasingly at risk for eating disorders, and in canada, between 12 and 30 per cent of girls and nine and 25 per cent of boys aged 10 to 14 report restricting nutritional intake in order to lose weight. most people with eating disorders suffer from additional, anxiety and mood disorders.
the mental health connection
wendy preskow is the founder and president of the national initiative for eating disorders (nied). she has been working tirelessly for decades to achieve awareness of eating disorders as real mental health illnesses, as well as for funding from the canadian government. some provinces, like manitoba, have pledged more funding for eating disorders programs since the pandemic began, but other provinces are lagging, according to advocates.
wendy preskow is the founder and president of the national initiative for eating disorders (nied). she has been working tirelessly for decades to achieve awareness of eating disorders as real mental health illnesses, as well as for funding from the canadian government. some provinces, like manitoba, have pledged more funding for eating disorders programs since the pandemic began, but other provinces are lagging, according to advocates.
“i believe eating disorders are the orphan of the mental health landscape,” says preskow, who also advocates for her daughter, who has suffered from eating disorders most of her life. “why, only now — with the pandemic looming over us all and the shocking unacceptable increase in eating disorders both with children, youth, adolescents and adults — is the government ‘starting’ to acknowledge a problem that has existed for decades?”
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dollars for eating disorders
while programs like the one at sickkids are more common, funding for eating disorders research in canada is low compared to other mental illnesses. a recent study published in world psychiatry indicated that in canada, government funding for eating disorder research equals approximately cad$2.41 per affected individual, compared to cad$462.14 per individual with autism, and cad$103.31 per individual with schizophrenia. researchers have linked this to the lack of funding for programs outside of hospital settings.
while programs like the one at sickkids are more common, funding for eating disorders research in canada is low compared to other mental illnesses. a recent study published in world psychiatry indicated that in canada, government funding for eating disorder research equals approximately cad$2.41 per affected individual, compared to cad$462.14 per individual with autism, and cad$103.31 per individual with schizophrenia. researchers have linked this to the lack of funding for programs outside of hospital settings.
for this reason, most programs that are publicly funded in canada are for children in an emergency, in-patient circumstance. those publicly-funded eating disorders programs are multidisciplinary and divided into outpatient (patient is mainly in self-care at home, with weekly hospital check-ups), day treatment (patients sleep at home but spend every day at the hospital for meals and therapy sessions), and inpatient (the patient is in hospital for constant physical monitoring and intensive therapy). but during the pandemic, most hospitals have had to made access to treatment harder because of an unprecedented uptick in admissions. not only are healthcare facilities out of beds, but they have also had to lower the criteria for what makes a patient sick enough to get treatment just to meet the needs of the patients in crisis or emergency. in the city of toronto, there are no publicly funded outpatient treatment programs for adults in recovery.
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dr. leora pinhas, who has worked as an eating disorders specialist for many years in both the public and private sectors, previously told healthing about the discrepancy between the cycle of emergency or inpatient care, and the lack of education for young people who transition to adulthood without the controlled environment of hospitalization — a situation that often leads to devastating relapses. from her perspective, people living with an eating disorder should be able to access a “wrap-around service in the community” for as long as they need it.
“we teach patients how to eat in a hospital where their food comes pre-measured in trays,” said pinhas. “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. then they relapse and we send them back into the same program over and over and expect a different outcome.”
this lack of support when out in the world can be difficult. at sickkids, we had constant care at both a clinical and a psychological level, meal supervision and a team of staff who treated us with respect. however, once we turned 17 years old, at an age we could no longer be admitted as children or adolescents, we were released without our sickkids family to provide the infrastructure and protection we were lacking at home.
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but how do we get from this disjointed cycle of ineffective care to the more holistic view of supported recovery that pinhas envisions? according to preskow, the key to change is involving people who know what it’s like.
“i am a very firm and determined believer that lived experience folks need to be around tables when discussions take place, as these voices are critical to any policy decision,” says preskow. “and the same applies to research.”
as someone who has lived this journey, i think a series of community 12-step programs — like those offered through alcoholics anonymous — would benefit most adults with eating disorders who are struggling to stay in recovery. i hope to develop such a program with the help of my psychologists and primary care physician — one that is in as many communities in ontario as possible. ideally, this would become the norm for any eating disorders patient who has been forced to leave the security of a clinic environment because they are 17 years-old and has no idea where to turn, and who doesn’t have the financial means to fund continued treatment.
it would also be a place to share stories of trauma and fear, experiences of being judged, humiliated and embarrassed by the fact that they can’t simply choose to end their eating disorder. it may be a place where their fight or flight instinct can translate into a plan for long-term survival.
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until something like this exists, recovery will continue to be so much more difficult for people with eating disorders. it’s time for change.
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