Those We Leave Behind: Toronto’s Approach to Eating Disorders
One in ten Canadians suffering from eating disorders die from them. A personal reflection on these treatable illnesses, the lack of resources, and a story close to home.
BY: JAYME LUTZ
Art by Jayme Lutz // THE UNDERGROUND
My neighbour passed away last week. After suffering from a lifelong battle with an eating disorder and other mental health issues, her heart stopped. Just like that. She was 50 years old.
I mostly saw her in the spring and summer, when the sun would peek out from its hiding place in the clouds and beat down on our sunburnt shoulders. I’d find myself in my backyard with a fence between us, separating our yards, but more connected than she had ever known. We’d talk about our gardens. What fruits we were planting, the colour of flowers we loved most. She once gave me a For Dummies book centred around self-publishing. I barely knew her.
In the winter months, she’d hibernate away. Sometimes my family and I wouldn’t see her for months at a time. It was just how she lived.
For so long, nobody else knew that I understood what she was going through. I could recognize myself in her features: her thinning hair, her anxious demeanor, her ever-changing weight. Seeing her fragile frame would remind me that I’m not alone in my now 18-year-long battle with my eating disorder.
Eating disorders, often referred to as EDs, are extremely common in our society. It’s estimated that over one million Canadians classify as having an ED. Statistically, EDs kill one in ten Canadians who are affected. We are losing too many people to a treatable illness.
Not only do EDs present themselves physically, but they’re also considered as mental illnesses. A mentality amongst people inside and outside the ED community is that in order to be taken seriously, you need to “look like you have an eating disorder.” This includes being what some would assume “the poster child for EDs”, the image the media sells to us as what’s sick: somebody who is extremely underweight and practically on their deathbed.
The truth is that not everybody has the same experience. Eating disorders don’t discriminate based on factors like gender, age, race, or body type. Anybody can find themselves battling it.
The two most recognized EDs are anorexia nervosa and bulimia nervosa. To be diagnosed with anorexia nervosa, somebody must be extremely underweight due to restricting and purging food intake. Specifically, people with anorexia weigh at least 15 percent less than the normal weight for their age, sex, and height. Bulimia nervosa is classified as someone who feels a loss of control and binges a larger amount of food than most would eat in a similar time period. They must also engage in symptoms such as purging, excessive exercise, or using other forms of weight suppressants.
At the worst of my ED, I was at my lowest weight. I wouldn’t eat for days and would engage in extreme ED symptoms to avoid gaining weight, such as self-induced vomiting after every meal, exercising for three or more hours a day, and taking multiple weight loss medications at a time.
Going out to eat with my friends was a chore, family meals became non-existent, and dinner dates weren’t an option. My mind was always dwelling on food: when will I next eat? Where can I purge after? Will they notice if I don’t eat? My mind became so wrapped up in weight that I refused to go shopping, swim at the beach, or take pictures because I was so terrified to look at my body.
I either refused to eat during family holidays or would purge everything right after. I skipped out on birthday cake for multiple years. Some days all I would eat is a few crackers. Some days I’d only eat one.
My ED was running my life for me. I wasn’t having fun. I wasn’t me.
Journal entries overlaid with texts answering “What are 3 things you like about me?”
By: Jayme Lutz // THE UNDERGROUND
I had all of the symptoms of an eating disorder, but I didn’t fit into the strict classifications for anorexia nervosa or bulimia nervosa. Although my doctor considered anorexia nervosa, I was just above the weight limit and wasn’t fully diagnosed or treated as such. I was told I had food problems, food and weight anxiety, and body image issues that came from my other mental health problems. Sometimes I was told it was just a phase.
I didn’t have a proper diagnosis, which meant that my doctor could only do so much for me. I was never offered targeted ED groups or services. At times, I felt like my doctor just didn’t care about me. Maybe my case wasn’t severe enough.
The Diagnostic and Statistical Manual of Mental Disorders (the DSM), which sets a standard for and classified mental disorders in North America, lists the different kinds of EDs.
Released in 2013, the fifth publication of the DSM came. The DSM-5 included different types of ED classifications so that patients could be properly diagnosed or diagnosed at all. Instead of being put into two strict categories, the DSM-5 added new sub-categories of EDs: binge eating disorder, purging disorder, night eating syndrome, and atypical anorexia nervosa.
Before being diagnosed, I internalized my shame and convinced myself I was over-exaggerating. I hated my body but maybe I was being sensitive. I was probably fine if nobody could diagnose me. I had been going through this since I was five years old but I was probably being dramatic. I cared too much about what other people thought of me. I was just a normal, insecure teenage girl.
The DSM-5 inclusion of anorexia nervosa finally reassured me that my ED wasn’t all in my head. Atypical anorexia nervosa has the same symptoms of anorexia nervosa, but there’s no weight limit that has to be achieved to be diagnosed. Finally having an answer to all of the problems I was having felt like a miracle. For the first time in what felt like forever, I had hope that I would get better.
But nobody told me how inaccessible treatment options are in Toronto.
In Toronto, there are far and few inpatient and outpatient ED treatment centres and groups. The lack of ED-focused options is due to political, social, and economic factors. Seeking help is the first step, but navigating Canada’s ED services is another 20 steps.
Not all ED programs are free. This discriminates against and excludes people who can’t afford treatment. Getting help for a life-threatening disease shouldn’t be economically unaccessible.
There are currently only four free ED treatment programs in Toronto. Toronto General Hospital (TGH) provides services to the community, including inpatient and outpatient treatment. North York General Hospital (NYGH) offers both adolescent and adult outpatient treatment. Sheena’s Place holds focussed groups for adults aged 17+. SickKids provides treatment for kids aged 8-18.
I was denied treatment at TGH because they didn’t have the space for another person. Most of the groups at Sheena’s Place I’ve been really interested in fill up immediately. I couldn’t go to SickKids because I was over 18.
Factors that may hinder one’s involvement in these programs are, but not limited to: age, severity of symptoms, program space and personal time availability, whether doctor-referred or self-referred, and wait times to be accepted.
Another option is to find a psychotherapist that specializes in EDs, but can be as costly as $300 per one hour session. The Ontario Health Insurance Plan (OHIP) does not cover psychotherapy.
Premier of Ontario Doug Ford recently launched expanded services for people suffering with their mental health. The services make no mention of specific ED treatments. The importance of ED visibility is to end negative stigma and to provide people with the tools to get better. When the mental health conversation doesn’t include this information, more people get worse. More people die.
Due to the current COVID-19 lockdown, fears of gaining the COVID-15 have become a popular meme with people citing that they’re eating a lot more than they normally would.
Once the lockdown loosens and more places start opening up, a rise in ED symptoms is estimated. Coming out of lockdown may seem like a body reveal of sorts, and doing so during the warmer months can induce more heightened ED symptoms. Having to wear less clothing due to the heat and being more active can trigger negative thoughts and engagement of symptoms.
So how is somebody supposed to get better when there are all of these barriers in place?
We need to write to our local and provincial governments. Voices need to be heard in order for change to happen. Staying silent is staying passive. We need to write to our university so that they can expand mental health services and focus on EDs. Health and Wellness services need to include more ED related treatment options, whether that be hiring nutritionists and ED focused counselors or facilitating support groups and awareness events.
I am one of the lucky ones. I was given a great referral from my psychiatrist and spent 16 weeks in the NYGH adult ED program. I have been fortunate enough to participate in several Sheena’s place groups. I have an amazing support system made up of doctors, my friends, and my family. I’ve learnt how to manage my symptoms, but I’m never going to be cured. This is something I’m going to have to face for the rest of my life. There are still going to be challenges and times where I absolutely hate myself. With help, these times have become less frequent.
But there are people who aren’t as lucky. There are so many countless people suffering with EDs who are not receiving treatment due to the lack of accessibility across the ED board.
There are people like my neighbour who never get help.
Once the warm weather comes, we would have waved hello to each other while planting flowers. I could have told her about how much I love sunflowers and how excited I am for them to bloom. She would’ve smiled and chatted a bit.
Yet, here we are. Living in a society that isn’t taking ED treatment seriously. A society where those who, like me, are fortunate enough to get help are the survivors. But those who get left behind are the people we have to advocate for. We have to fight for people like my neighbour, Laura, before it’s too late.
Art by Jayme Lutz // THE UNDERGROUND
