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Content Warning: This article contains information about thoughts and behaviours related to eating disorders.
The first week of February marks Eating Disorders Awareness Week, a national public awareness campaign dedicated to shedding light on the reality of eating disorders (EDs) and the people they affect. Before COVID-19, EDs had one of the highest mortality rates of any mental illness. Now, with routines upended and isolation at its peak, the journey toward wellness is even more arduous for some.
“When you live with an eating disorder, free time is a dangerous thing,” said Wendy Preskow, president and founder the National Initiative for Eating Disorders (NIED). “In the absence of many pre-pandemic outlets and routines, the voices encouraging ED behaviours only become louder.”
Preskow isn’t just speaking from her nine years of experience running NIED. She is also a full-time caregiver to her daughter Amy, who has struggled with eating disorders for over 20 years.
“With so many of Amy’s prior activities and distractions taken away, I can feel the tension of her free time,” said Preskow. “I have to keep her company just to help her get through the day. When you’re in that state, every second counts.”
A perfect stormFor the one million or so people in Canada diagnosed with an ED — and the countless others suffering in silence — the empty space in the day is just one of the challenges during a pandemic.
Increased anxiety, uncertainty, and a perceived lack of control can all encourage ED behaviours (i.e., restricting, binging, purging, or overexercising) — which are often used as coping mechanisms in times of stress. Add to that the advent of “the quarantine 15” (the potential weight gain associated with the pandemic), and it’s not hard to understand why crisis lines and services for EDs and have had a marked influx since the arrival of COVID-19.
A strained systemUnfortunately, as Preskow pointed out, these services were already stretched to their limit prior to the pandemic. Now, the situation is dire. “Many outpatient programs have had to completely shut down, and others have seen their wait-lists double or triple,” she said. “So many people need support, but they can’t find it.”
In some cases, the search for help includes parents seeking treatment for young children, who are increasingly engaging in dieting behaviours that may heighten their risk of developing an ED.
As a recent Globe and Mail article noted, “Children as young as 9 and 10 are being treated for eating disorders. Pediatricians say many of their new patients are sicker and more underweight than those typically seen before the pandemic, while the wait time for outpatient referrals has doubled to six months.”
or Preskow, these trends are not acceptable. “When you’re seeking help for a loved one with an ED, waiting doesn’t feel like an option.”
The challenges of caregivingIn the early days of Amy’s illness, Preskow recalls how each filled-up program, unavailable service, or unanswered query felt like a devasting blow to her and her husband.
While NIED isn’t a service provider, she has still channelled that experience into her daily work. “When someone reaches out, I do my best to follow up right away,” she said. “I remember how it felt to be absolutely desperate for guidance. I wouldn’t wish that on anyone.”
To this day, Preskow said, being a caregiver is a constant challenge. And after 20 years, she’s still overcome with fear when she sees Amy calling. “I’ve asked her to text me a heart before she calls so that I know everything is OK. Then I can answer without panicking.”
For other caregivers struggling to navigate their loved one’s illness, Preskow urges unconditional love above all else. “We have to remember that having an eating disorder isn’t a choice. It can be hard not to take setbacks personally, but that person needs love and encouragement, no matter what.”
The road to wellnessWhile COVID-19 has ushered in a new wave of challenges for those affected by EDs, support is still available. NIED’s list of resources includes options for immediate support, interactive tools, and a variety of other programs. The National Eating Disorder Education Centre (NEDIC) also offers many helpful resources, including a helpline and a list of COVID-19-related information, events, and support.
As for Amy’s journey, after two long decades, she’s managed to find a new footing. “Right now she’s climbing the tallest mountain in the world,” said Preskow. “There’s still a long way to go, but it’s worth every step.”
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