EDSNA founder Moyra McAllister describes watching her daughter struggle with Anorexia Nervosa: “In the early days when Caitlin’s weight was plummeting, her personality was changing and I was losing my daughter, fear was my constant companion. Watching my daughter struggle with anorexia nervosa was the hardest thing I have ever done.”
That was five years ago; when McAllister turned to her community for help, there was nothing out there. So she created the Eating Disorder Support Network of Alberta’s, a network of volunteers and professionals equipped to provide education and support for sufferers and their families. Now just under two years old, EDSNA has grown tremendously. They are running support groups in Edmonton, Red Deer and are opening branches in Calgary as we speak. Executive Director Sue Huff met McAllister four years ago when she was writing a book on eating disorders. “Both of us were motivated to build something better for other families,” she says. It wasn’t until McAllister was looking for board members that Huff became intimately involved with the organisation. “It was her baby, her dream, but I am happy to be her co-pilot on this. ”
Huff works from home in Edmonton, overseeing the expansions into Red Deer and Calgary as well as networking within the community, looking for revenue streams and connecting with medical professionals. “It really is an illness that most people don’t know very much about, and often what they do know isn’t correct,” says Huff. “We have a lot of work to do to raise awareness in the general public, but also (with) medical professionals who often don’t have solid training.” According to the National Eating Disorder Information Centre (NEDIC), a Canadian non-profit providing resources on eating disorders and weight preoccupation, clinical eating disorders include Anorexia Nervosa, where sufferers barely eat, over-exercise but still feel “fat.” Bulimia Nervosa, where people where eat out of control (binge) and then try to get rid of the calories, often through vomiting (purging.) Bulimics may also fast, abuse laxatives, or over-exercise. Then there is Binge Eating Disorder, whose sufferers eat until they are in pain, eat in secret, eat for comfort or escape from emotional pain, and other combinations of starving, bingeing, purging and over-exercising. The vast majority of anorexics and bulimics are between the ages of 15 and 24 years old, and men make up a third of all cases. The average length of duration of the illness is eight years, and the stakes couldn’t be higher: “This illness is very difficult, tricky and complex because it is so difficult to treat. It has very complex, often interrelated factors and has the highest mortality rate of any mental illness,” says Huff.
Edmonton-based EDSNA member Shannon Zwicker says the network has been enormously helpful for her. “Initially I didn’t think I needed a support group. I thought it was something I could manage on my own,” she says. “But I was much better able to serve as a support to my daughter by going out to the group and meeting other parents.” Zwicker advises people who are supporting loved ones with an eating disorder to learn as much as they can and advocate in the same way you would if they were suffering from diabetes or cancer. She says eating disorders are both a physical and psychological illness, for which no one is to blame. EDSNA has brought her from “despair to hope,” she says.
Like many who suffer from mental illnesses, eating disorder sufferers and their families experience social isolation and shame. Luckily, EDSNA has a wonderful team of highly skilled individuals, professionals such as registered psychologists, dieticians, and social workers who have extensive background in eating disorders who facilitate their support groups. This coming February, EDSNA is hosting Edmonton’s second annual Eating Disorder Awareness Week. They will be hosting an all day symposium called ED-ucate on eating disorders, made possible by a grant from a local law firm, Field Law, which open to the public. The symposium will discuss four topics: Eating Disorders in the Classroom, Eating Disorders and Fitness, Eating Disorders and Stigma, and Eating Disorders and the Caregiver. In the evening, programs are geared towards health professionals only, including a presentation by a Toronto-based neurologist. The City will be lighting up the High Level bridge in purple in honour of Eating Disorder Awareness Week, and Huff is collaborating with the Canadian Mental Health Association for an event called “Smash-ED,” where people can bring their home scales to the University of Alberta campus and smash them to smithereens. “There’s lots of great stuff happening, it’s really exciting, it’s really taken off,” says Huff.