Thursday, January 22, 2015

Canada: Eating Disorder Awareness Week (and beyond) Action

Storytelling Template for International Eating Disorder Action Blog CANADIAN HEALTHCARE ACTION

Purpose: These stories will be used to bring attention to the myriad ways in which the healthcare system fails those with eating disorders. They are also used to highlight that full recovery is possible in properly functioning medical and treatment systems.  This balance is important.

Responsible story telling includes not using sensational photos or numbers as these may be subverted for unsafe use and we don’t want that. We also don’t want to reinforce a message that only those who are dramatically thin are sick.

WHO: Briefly tell us who you are and who your loved one is. The more people realize our families/children are just like theirs, the more likely they are to see themselves in our stories.

WHAT: What is the diagnosis, how long they/you have been ill and where the person is now in terms of recovery? Try to tell the story using medical language that people will understand.

WHERE: Be specific about where your healthcare is delivered and who is responsible for delivering that healthcare. Please include your postal or zip code.

WHY: This is the bulk of your story—we want to highlight places along the way that were pivotal---delay in diagnosis, waiting times for services, lack of services, uninformed physicians, hospitals, etc. Discuss lack of education or outdated information given to you by clinicians. If you have gone outside the system discuss the tremendous financial and other sacrifices you have made. Conversely, if you have a story where things have gone well, share what makes your story different from most of the stories we encounter.

FINAL THOUGHTS: We are trying to paint a visceral picture so small details can be important. The word limit is 500 words and if you have non-triggering photos to include that is very helpful. Use of your own name is great, but it’s absolutely fine to use pseudonyms. The pieces will be edited, but overall content/message will not be altered.

Email your story to iedaction.global@gmail.com with a cc to info@nied.ca 

We will be using these hashtags on social media: #cdnpoli #EDAW2015 #IEDAction so please check and retweet these on a regular basis.

Please visit our website, like our FB page, and follow us on Twitter: Our voices are amplified when we raise them TOGETHER!


My name is Lisa and I live in Mississauga, Ontario; I have two incredible daughters, an amazing fiancĂ©, and assorted animals. Both my girls have struggled with mental illnesses for many years. My youngest daughter has a diagnosis of anorexia, binge-purge subtype.

Though M. was diagnosed in October of 2011 at 17, we had already been enduring a nightmare for many years. From the time she was 9 or 10 years old, we spent more time in doctors offices and hospital emergency rooms than I can remember, due to complaints of constant stomach upset, constipation, lethargy.  We once spent 15 hours in the ER of Toronto's premier Sick Kid's Hospital when she was 12 because she hadn't eaten anything solid for over 2 weeks, was persistently vomiting and sleeping 15 hours per day. Her anxiety became crippling.

At 15, she started to eat "healthy.” This meant virtually no dairy, no pasta, no bread, no baked goods (and yet she would bake up a storm) and eventually no meat. Her energy levels continued to drop and her hair became dry and brittle, off we went again to our family GP who offered no real help and said she was just a "teenager going through the natural progression of working towards independence.” At 16, shopping for summer clothes and bathing suits my heart stopped and life as we knew it came to an end.  This time our GP suggested, upon discovering a terrifying weight loss of a quarter of her weight that I send my daughter to Africa to "see what starving children really look like."

At no point did our GP say “”eating disorder,” though she did say “willful,” “disrespectful,” “manipulation,” “depression,” and “conniving.”  At the end of my daughter's 16th year we were FINALLY referred to an eating disorder therapist.  Upon diagnosis we were told that on a scale of 1-10, my daughter's eating disorder was so entrenched it was a 15. We were also told that due to my daughters age, she turned 17 days after diagnosis, that we would likely run out of time to save her before the age of 18 when she would become an adult, effectively ending our parental right to save her life.

Even after her diagnosis, one that was clearly delayed due to lack of education on our GP’s part, we were never steered toward good medical or psychological information that was vital to helping our daughter. What we did experience were interminably long wait lists, being denied access to services either because our daughter was to sick or not sick enough and wholly inadequate number of beds in dedicated facilities.

Today I have a daughter who teeters constantly on the brink of medical hospital admissions and still has no real help for her eating disorder. I do what I can to find adequate resources for her and I live with the constant dread that whatever help I may find will not come in time to save my daughter’s life.

This project is collaboration with National Initiative for Eating Disorders (NIED).

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