I am a young adult who has lived under/in/against/with anorexia for nearly a decade. I live in BC amongst big trees, wild ocean, my very special dogs, and my wonderful family and friends. I have a BA in anthropology and am active in paid, volunteer, and community roles related to health research, social justice, and community activism.
In recent years, there has been increasing acknowledgement on the importance of early intervention for Eating Disorders. This is so important, given that the recognition, diagnosis, and treatment of an Eating Disorder can be a slow, difficult process. And those who receive treatment early can benefit significantly. Programs like FREED (First Episode Rapid Early Intervention for Eating Disorders) through the NHS in England are exciting for me to see.
And they are also painful for me to see.
As someone who received early intervention before crashing into a decade-long acute Eating Disorder, I am aware that an “intervention” in and of itself is not sufficient. And being a person and loving people for whom “early” no longer exists, I am likewise aware how pressingly necessary it is to have more than that.
Prioritizing early intervention presumes that we have ready to go, evidence-based treatments to offer those who need them. This is not the case. There are no strongly evidence-based treatments for Eating Disorders. And the somewhat evidence-supported treatments that do exist are often not offered in Canada or are very inaccessible – Eating Disorders are severely underfunded across Canada. There are significant gaps in training, services, and capacity; with the services that do exist tending to be patchwork, inaccessible, and inadequate. And many who are in need will not be recognized for these treatments. Misunderstandings of Eating Disorders and size stigma, sexism, and racism combine to make it difficult for those other than white, thin, cisgender girls to receive a diagnosis.
Prioritizing early intervention and championing its success can then, I believe, risk misrepresenting the current, dismal realities of Eating Disorders research and care. Of course policymakers, researchers, and practitioners want to centre and champion success. And looking at how young patients who are brought to treatment early respond well will look more promising than looking to adult patients returning again and again. But this is, in some ways false promise. Take anorexia as an example – estimates of relapse rate range from 25%, up to 54% (and these are often using bare minimum criteria like BMI), and many cases of anorexia last decades to lifetimes (1). A survey of caregivers suggested only 21% of people with anorexia make a full recovery (2). Even if early interventions do exist and help some people, we lack enough effective options for the significant number of people for whom they do not work. And with $2.41 in research funding for each person affected by an Eating Disorder in Canada (3), that lack is unlikely to be filled any time soon.
The second concern I have with the prioritization of early intervention is that as early intervention becomes a priority; repeated intervention or late intervention can become de-prioritized or even devalued.
If early intervention is framed as the priority, then it becomes intuitive to conclude that those who did not receive or did not respond to early intervention are not the priority. If early intervention is evidence-based and effective, then patients whose symptoms relapse or persist have now failed their best shot. This is not hyperbole. When I encountered practitioners at 15, I was met with urgent concern, active responses, and promises of full recovery. As I continued to encounter practitioners at 18, 20, or 23 I was met with resigned nodding, requisitions for bloodwork monitoring, and mentions of adult programming miles away if I wanted to try again. As a newly presenting person with an Eating Disorder, practitioners felt equipped with diagnoses, medications, treatments, supports, and promises. As a returning patient, all practitioners had were the same diagnoses (now with qualifiers of disengaged, uncompliant to tack on); but fewer if any treatments, supports, or promises. Meanwhile, funding and research for prevention, early identification, and early intervention continue apace.
Patients do not fail treatments; treatments fail patients. But rather than receiving compassionate, better suited, new care options, returning patients are too often blamed, sidelined, and neglected. When care is offered, it is often the singularly prioritized and championed early intervention type care.
What we have to offer in terms of diagnoses and treatments tends to be the same, regardless of whether someone has a two month-long or two decade-long Eating Disorder.
Two years ago, I was privileged and lucky enough to be provided with care and support outside of the limited, narrow, harmful treatment of the public Eating Disorder care system in Canada. I have not reached full recovery (back to that 21% thing…) but I’m living fully and well in a place beyond intervention or attrition, early or late, evidence-based or ineffective, success or failure. Meanwhile, I continue to see friends and loved ones with Eating Disorders hit up against our limited, inadequate system over and over again.
Early intervention is important. And so are accessible, supportive, tailored, effective “at this moment now, better late than never, from here on out” interventions. Taking Eating Disorders seriously means facing up to the current gaps in knowledge and services and providing enough research dollars, program funding, practitioner education, and treatment options across the spectrums of illness, experience, and identity so that everyone can be adequately cared for.