This article was written by a volunteer, KC, that addresses the theme – Eating Disorders Can’t Afford to Wait – What Happened While we Waited. KC is 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.
When you read the sentence “What happened while we waited,” you may imagine a group of people sitting in a waiting room, signing their names on a wait list, or standing in a line to board a ferry. Waiting is often associated with stillness, patience, and expectation. But when you enter the world of an Eating Disorder, you do not step into anything like an orderly terminal. Instead, you are thrown out to sea.
What happens when you get thrown into an unfamiliar, threatening sea with no land in sight? For the first half a decade of my Eating Disorder, my mom would often tell practitioners that we were just managing to hold our heads above water. For her, keeping afloat was a constant struggle: A struggle to keep me alive and safe, to bear with the litany of challenges and pain, and to find understanding and help.
For me, I had forsaken any expectations of reaching something better. I was not in a place of active waiting for return or arrival. In this metaphorical sea, I was swimming just “to get out,” all while other people screamed at me that I was going into deeper, rougher waters. I no longer wanted to get to the land I had left or to any new land people tried to promise me, I just wanted out of the sea I was in.
People do many things when they are thrown out to sea – metaphorical or real. They may cry out, search, fight, try, give up, try again…But they don’t wait.
We are being told to wait: Wait for assessments, appointments, beds, funding, better research, better treatments. Many of us are forced to wait even when it may seem that adequate supports exist: wait for your weight to change so you can meet eligibility criteria, wait for available providers to take you seriously, wait some length of time until those providers realize the current approach is not working at all, wait in the ER while one practitioner tells you you’re close to dying and the next tells you you’re overreacting, wait until the caring nurse relieves the punitive one, wait a requisite time and duration of weight gain to be discharged from a harmful system, wait in worsening psychological and physical decline until something might change and work.
Eating Disorders don’t wait. You can’t put an Eating Disorder on hold like we have in this pandemic with social contacts, working in the office, going to the gym, or travelling. An unmanaged eating disorder rages and infiltrates a person’s brain, body, life, family, and community.
So, as we are told to wait and as policymakers, health authorities, and practitioners look at case files and available beds, people with Eating Disorders and their loved ones are grappling, flailing, striving, suffering, and trying to survive.
There is immense suffering in life with an unmanaged Eating Disorder that cannot be captured in needs reports or wait lists. Eating Disorders tear at relationships, commitments, bodies, and even a person’s own sense of self. While people focus on weight loss, there is an underappreciation for the loss of one’s passions, physical abilities, competencies, ease in the world, caring mutual relationships, and vitality. A person with an Eating Disorder may experience utterly foreign sensations, urges, and feelings, which can be terrifying and distressing. There can be rage, fear, and despair at a level the person did not know was possible. Loved ones often feel the wrath of this rage, the harmful consequences of this fear, and the heavy blanket of numbness from the despair. As we continue to wait for meaningful understanding and support, those with Eating Disorders and their loved ones continue suffering.
The vast complexity and value of the lives that we all continue living with Eating Disorders is likewise not captured by reports and statistics.
The deep pain and fleeting times of relief, moments of pure joy and dark despair, meaningful victories and devastating defeats, daily habits and absurd coincidences, moving new connections and tragic losses continue to exist. As individuals, with diverse and rich attributes beyond “anorexic” or “bulimic,” we continue to be and interact with the world (albeit often more restrictedly) as our unique selves. In the depths of an unmanaged Eating Disorder, I have seen people kiss a newborn niece, graduate from university, tenderly care for seniors as a volunteer in long-term care, and speak articulately at an event for a cause that mattered to them. We are not BMIs to increase, beds to empty, diagnoses to resolve, and checkboxes to tick off.
As we continue to wait, people with Eating Disorders often resort to what has been done for decades, even centuries: lacking an available, accurate, and usable understanding of the disorder or any treatments, we and our loved ones guess, try, fail, try again, and hope to reach a point of sustainable life. There is such a lack of recognition of the important ways people with eating disorders and our loved ones create our own ways to cope and live meaningfully with this illness. This is one of the most important things we are doing right now while we wait: We stop waiting on the system.
But endurance, trial and error, and sacrifice as the status quo is unreasonable and dangerous. It took 8 years of my life, significant costs and damage, and incalculable suffering to get afloat. It was only because of immense support and privilege that I reached a place of stability. And, stability in the Eating Disorder sea can still be precarious.
In the absence of accessible, suitable, compassionate, effective services, people with Eating Disorders will continue to be thrown out to sea. Without acknowledgement of these gaps and inadequacies in the current understanding, treatment, and support of eating disorders, people will continue to suffer and to die in that sea. We can’t afford the pain, all the losses and sacrifices, all the damage, and all the life being lost that is incurred as we are told to wait. So, as EDAW underlines, we simply can’t afford to wait. https://nied.ca/the-history-of-eating-disorders-awareness-week-edaw/