diagnosed with an eating disorder: navigating the system requires proper care and advocacy
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"if you believe that there is a problem and they need support, you need to bang the table to get the support.”
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close to three million canadians have been diagnosed with an eating disorder, with youth making up roughly half of those cases. people living with eating disorders are often diagnosed long after the disorder starts because it’s not always obvious, and in many cases, disordered eating behaviours can be hidden from friends and family.
because of that, when people are told that they are officially dealing with an eating disorder, it doesn’t typically come as a surprise.
for many youth, especially, “it’s something that’s kind of a long time coming,” said nur osman, a social worker with the live-in eating disorder unit with ontario shores.
“eating disorders tend to operate in silence for long periods of time, to the point where often, even though the kid knows that there’s a problem, the parents have no clue, to no fault of their own,” he said. “the kids that we see are often high achievers, elite athletes, really amazing kids who are often described as the easy ones, and then all of a sudden, their family doctor sort of lets the family know that, no, they have an eating disorder. this is severe.”
eating disorders aren’t simply about wanting to weigh a certain amount, as many people may believe. there are many complex intricacies that go into eating disorder development, as well as negative effects that can occur both mentally and physically in people who develop them. in some cases, the damage can be irreversible or even life-threatening.
but when a person with an eating disorder does finally reach out to get a diagnosis and treatment, finding the right path through the health-care system can make all the difference in successfully treating both the mental and physical aspects.
connecting with a health team
after diagnosis, people with eating disorders are not likely to receive care from the same person who diagnosed them. they have to find people qualified to help them “explore the functions of their eating disorder” as a way to address the big piece as to why it’s developed, and how it serves them as a form of control when they feel powerless in other areas of their lives.
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this often starts with meeting with a therapist whom they feel connected to and safe enough with so they can open up about what else is going on in their lives that could be potential contributors to their eating disorder.
they may also meet with other health professionals, such as dietitians, to help create and monitor meal plans to manage caloric increases or decreases, as well as with a medical provider to manage medications and the physical impacts and symptoms that arise when a person has an eating disorder. since the condition is multifactorial, it takes a team to help someone address it at various levels.
“(it) goes beyond just weight, because a lot of our kids face challenges with vitals and glucose and those other various other sort of markers,” said osman.
this is typically in outpatient services. inpatient is a little different.
“in a live-in treatment setting as we have on our unit, we are staffed with child and youth counsellors, therapists, dietitians, rec therapists, teachers, a fleet of nurses, psychiatry. so, there’s a lot of professionals that are part of the care team within the higher level of care,” said osman.
while both outpatient and inpatient options are available, the type of treatment a person needs will largely depend on the severity of their symptoms and how detrimental the eating disorder has been on their physical and mental health. in the most severe cases, medical stabilization may be required, which involves a person staying in a medical hospital until it is safe enough to be transferred to an inpatient or outpatient facility.
there are a few other aspects of eating disorder care that are involved, including emotion-focused therapy principles and dialectical behaviour therapy principles, which can often be used alongside family-based treatment (fbt).
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embracing family-based treatment (fbt)
eating disorders do not just affect the person who develops them. there is a family component that must be addressed when finding adequate care in the health-care system. that’s where fbt comes in, because the entire family has to be actively engaged in treatment for eating disorders, especially in youth and children.
“it impacts somebody’s ability to parent, somebody’s ability to be a sibling, to be an aunt, to be an uncle, all of those things get impacted,” said osman. “every kid that we treat, it’s never just that kid’s problem and that kid’s problem to solve. because as a society, people don’t realize how much of our social connections and family gatherings and things surround food.”
with food being the main stressor in children with eating disorders, family care empowers parents to take back a little control when it comes to meal times and stuff around food in their child’s life.
“let’s say, self-harm or conflict in the home or a lot of emotional dysregulation, which will come out within the family unit, results in a lot of frustration, a lot of burnout in parents. parents are primarily the ones providing care for the child, and teenagers and adolescents are hard enough to care for as it is,” said osman. “so, just that added level of days off work, the constant worry and drain that it takes on parents and siblings, so it is the true essence of family work, which is a lot of what i do and what the unit does.”
while families are often unique, the set principles of fbt are strict in the sense that going through this type of program requires both the patient and their families to be on board with what needs to be done to allow the person with an eating disorder to exhibit control in their lives through different, healthier outlets.
in cases where fbt alone doesn’t provide enough progress for the person with an eating disorder, other principles can be added that provide a level of control to the patient so they can feel as though they’re the ones deciding where they want to improve, with the proper guidance on how to get there.
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“there’s a lot of work to assess what goals the child has and how we can get them closer to what we call their life worth living,” said osman. “there’s different layers to the parents’ response to the child and the child’s response to the parent, so we do our best to allow the child to inform the direction of treatment without compromising what the research showed works to support these kids.”
navigating physical and mental effects ‘in tandem’
medical providers who work with people living with eating disorders may get wrapped up in the physical, focusing solely on medical stabilization at first, but there is so much more to an eating disorder that needs to be addressed for healing to occur.
while physical well-being is extremely important and must be addressed, both the mental and physical aspects need to be dealt with “in tandem,” if possible.
“there’s certain levels of emotional processing that can really only be done when somebody is fed enough where they can actually think critically and think abstractly,” said osman. “we need to focus on both, and there are limited places available to address both.”
the physical piece, such as weight restoration, which can be terrifying for parents to confront, is only one part of the larger puzzle.
“there’s the part that other people get to see, so that’s what gets the most attention. but that’s really just the beginning of it. because with regaining your weight comes other challenges that have to do with body image and self-worth and self-belief, and the challenges in your life don’t go away just because you become weight restored,” said osman.
to ensure that all sides are receiving equal attention, care has to involve addressing all sides at once by opening discussions up to process and find out the function of the eating disorder because people “don’t view the eating disorder as an enemy, the majority of the time.”
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“it was something that was there for them when others abandoned them or when they felt rejected, or something that gave them what they felt to be emotional support or validation. so, it’s exploring that piece of it, which can be done in the process of becoming weight restored,” said osman.
getting through roadblocks and stigma
certain barriers may act as hurdles to overcome when finding the right care path with an eating disorder. for example, waitlists exist at many inpatient facilities, and those in rural communities farther from care centres that could help them may also face difficulties both in terms of finding resources and funding travel or stays at private care clinics further from where they live.
that said, many organizations, such as ontario shores, do their best to accommodate large geographical areas so that no matter where a person lives, they can get the care they deserve.
“we service all of ontario, so we have the ability to provide certificates from all over the province, which is great, and provide financial support for families to come and visit to be sort of fully engaged in programming,” said osman.
online and virtual care is another option for people who may not necessarily need inpatient treatment but can benefit from finding a therapist who can “harbour an environment” that makes their patients feel safe, heard, and connected, as well as a dietitian who can work through the food aspects of eating disorders.
“the experience of eating disorder kids, they’re like any other kids in that way,” said osman. “they’re looking for acceptance. they’re looking for support.”
stigma is “immense” when faced by people living with eating disorders, and finding ways to cope can be challenging. there is no one-size-fits-all approach to stigma because, as osman puts it, “it’s extremely hard for our kids to manage the stigma piece, which again, is a lot of what contributes to them holding on to it for so long.”
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however, in osman’s experience, people with eating disorders are often resilient fighters who, when they go for help, want to overcome every blockage they experience, so finding a unique way to deal with it tends to be the norm.
it’s about finding something that works for the individual, and typically, that comes from their own strength.
“it’s something that each kid’s experience is going to be unique, and these are conversations i’ve had with our patients, and everybody seems to give a different response that is unique to them,” he said. “but it’s extremely challenging.”
finding resources and advocating for eating disorders
eating disorders affect millions of people, yet they are still treated as a “very niche portion of the mental health world.” that’s why it’s important for people to advocate as much as possible to cut through the noise and misinformation often found in the media about how the condition presents, when in reality, it’s so much more than people understand.
“there’s a lot of minimizing, and it requires caregivers to advocate strongly for their kids,” said osman. “it is not taking the word for it of various people. it is if you believe that there is a problem and they need support, you need to bang the table to get the support.”
to do that, it’s always helpful to know which resources are available, such as provincial eating disorder centres, such as the one at ontario shores, or more far-reaching organizations, such as the national eating disorder information centre (nedic).
“it’s a small space, and it feels never-ending, the sense that there are very few places that provide live-in care. there’s very few places that provide day treatments,” said osman. “but if you aren’t familiar with the system and the wait lists and sort of how to navigate it, it can be really challenging.”
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he continued, “my big thing in this space is, it’s just these kids are amazing. it’s something that people don’t get because they’re not in this space. it is an immeasurable impact on families and something that i will never truly understand, despite being in this every day, and the parents i get to support are amazing, and they’re strong, and these kids are extremely strong … they are some of the most amazing people i’ve ever met, and they’re just looking for support.”
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