Eating disorders have a huge impact on Canadians. The National Initiative for Eating Disorders (NIED) reports that approximately 1,000,000 Canadians have been diagnosed with an eating disorder, and that closer 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.
Finding help can be difficult, not only in childhood, but also in adulthood when getting support in recovery is something that an eating disorders sufferer has to fund alone. With the outbreak of COVID-19, the situation has become dire. Waiting lists have become frighteningly longer, and hospitals are at more than capacity with eating disorders patients.
Kaitlyn Axelrod is a social worker and psychotherapist, as well as the program and outreach coordinator at Sheena’s Place, a not-for-profit group where people aged 17 years old and up can go for support.
Axelrod has been working and volunteering for a variety of Toronto-based mental health organizations since 2013, supporting youth and adults with eating disorders and other mental health challenges.
She spoke to Healthing about how misdiagnoses, misconceptions and myths around eating disorders, combined with a lack of funding for treatment programs, are causing eating disorders to be continuously misunderstood and remain ever-present threats.
This interview has been edited for length and clarity.
What is the biggest challenge in treating eating disorders?
Eating disorders are often overlooked by healthcare providers due to a lack of knowledge, limited education and the enduring prevalence of several myths.
The first myth that is commonly held by professionals — and by people in general — is that eating disorders are a choice, ‘just a phase,’ or a ‘diet gone too far.’ In reality, eating disorders are complex mental illnesses that have serious physical and mental health consequences. A person does not ‘choose’ to have an eating disorder — an eating disorder develops as a result of diverse biological, social, cultural, and psychological factors. Eating disorders actually have the second highest mortality rate of all mental illnesses, second to opioid addiction.
The second myth that contributes to the under-diagnosis of eating disorders relates to who is affected. It’s commonly believed that mainly young, thin, white, affluent teenage girls or young women develop eating disorders. In reality, people of all backgrounds and demographics are affected. Specifically, certain populations — including people who identify as LGBTQI+ and people who experience food insecurity — are at a heightened risk of developing an eating disorder. And contrary to popular belief, men and boys account for approximately 25 per cent of people identified as having an eating disorder.
Racial bias is also a huge problem. Research shows that healthcare providers are less likely to diagnose eating disorders among Black women compared to white women, despite the fact that eating disorders are just as common in both communities.
Eating disorders are also overlooked, and even reinforced, due to misconceptions about health and ‘healthy eating.’ In a culture that glorifies thin bodies and demonizes larger bodies, many people are taught that they should strive for weight loss through dieting in order to be ‘healthier’ and more desirable. Experiencing weight stigma and body shaming increase a person’s likelihood of developing many mental health challenges, including eating disorders. Unfortunately, many people in larger bodies report experiencing weight stigma and body shaming from family, friends, and even healthcare providers.
Dieting is also a strong risk factor for the development of eating disorders and this behaviour is often expected or encouraged among people living in larger bodies.
Many people also face barriers to accessing therapy for their eating disorders. Few free or subsidized options exist and those that do typically have long waitlists. It’s also difficult to find a therapist who specializes in eating disorders, as most universities and therapy training programs do not include eating disorder content in their curriculums. Despite this, eating disorders and trauma often go hand-in-hand — research shows that people who have experienced childhood trauma are more likely to develop eating disorders than people who have not.
Why do so few free or subsidized options exist? And why are eating disorders so underfunded and unrecognized by the government?
I believe that the myths about eating disorders listed above play a part in this. Our health systems are also not equipped to capture accurate data regarding the prevalence of eating disorders due to both data collection and the capacity of health care providers. The latest eating disorder prevalence data was collected via census survey in 2012 and excludes several eating disorders, including Binge Eating Disorder, which is actually the most common diagnosis. This means that our prevalence estimates are likely an underrepresentation. Additionally, doctors in Ontario use outdated billing codes when seeing patients — eating disorders are not accurately captured in these billing codes, so even if doctors are accurately diagnosing patients with eating disorders, this information is not relayed to the government.
Local and global research shows that eating disorder symptom prevalence and severity has increased throughout the COVID-19 pandemic. Waitlists for hospital treatment programs continue to grow and this is making it more difficult for the government to ignore.
What is the key to therapy when it comes to addressing childhood trauma as it relates to eating disorders, and coping with staying in recovery past adolescence?
When seeking therapy for an eating disorder and childhood trauma, finding a therapist who you trust is key. Therapists (and all practitioners, for that matter) should be trauma-informed and eating disorder-informed if they are going to support someone with both. Understanding that eating disorder symptoms serve as coping strategies is also critical. A therapist must support someone in developing alternative coping strategies before expecting that eating disorder symptoms will subside. Harm reduction is an important consideration here. How can we support people in minimizing the harm associated with certain behaviours, while acknowledging that food is critical to physical, emotional, social, and cultural well-being? Unlike certain substances, we cannot abstain from food.
In addition to therapists, it’s important that family members, friends, and caregivers understand the impact of trauma and eating disorders on their loved ones, and know how to respond and support appropriately. For many people, access to a supportive community can be instrumental to healing and recovery.
What direction do we need to go in, when seeking to merge clinical diagnoses, mental health management through therapy, and advocacy?
It’s crucial that all of these worlds listen to each other and learn from each other. This work often happens in silos, which is not the most productive way to make change. Clinicians and advocates must be open to communicating and open to changing how things have ‘traditionally’ been done. It’s especially important that people with lived experience are heard and involved in decision-making. In order to work towards eating disorder treatment and recovery for all, we also must recognize eating disorders as social justice issues — people are impacted differently due to systemic oppression.
More data collection and research is also needed — especially regarding the prevalence of eating disorders and the support needs of historically marginalized populations, including people of colour, people who identify as 2SLGBTQI+, people living in poverty, people with disabilities, and people living in larger bodies.
What can we tell people who are struggling with maintaining their recovery, but who are “too old” to benefit from the infrastructure of places like Sick Kids?
Adult treatment and support options exist too! Unfortunately wait lists are long, but there are several hospital-based eating disorder treatment programs for adults in Ontario. There are also a few community-based eating disorder organizations in Ontario that provide free treatment and support. For example, Sheena’s Place provides free group-based support to people age 17-plus in Ontario affected by eating disorders.
While support groups are not a replacement for therapy or treatment, they can decrease feelings of loneliness and isolation, which often perpetuate eating disorder symptoms. Group members can also build community and learn skills for managing symptoms. Another community organization called Body Brave offers OHIP-covered eating disorder treatment. There are also private treatment and therapy options, although these are inaccessible to most individuals. The National Eating Disorder Information Centre (NEDIC) is a great place to start for information and referrals — its toll-free helpline and anonymous chat service can help connect individuals to eating disorder services across Canada.
It’s also important to know that if you are struggling, you are not alone. Unfortunately, eating disorders are incredibly common. It’s estimated that 2.7 million people in Canada have an eating disorder. We also know that the pandemic has increased the prevalence and severity of eating disorders for many people. There can be a lot of shame and stigma surrounding eating disorders, but know that you are doing your best in a challenging world and that even if the journey is excruciatingly hard, recovery is possible.
Looking for support and information on eating disorders? Some resources include the Canadian Mental Health Association, the Eating Disorders Foundation of Canada, and the National Eating Disorder Information Centre.