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of education or outdated information given to you by clinicians.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!
EXAMPLE
My name is Lisa and I live in Mississauga, Ontario; I have two incredible daughters, an amazing fiancé, 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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