An Open Letter to Parents and Loved Ones with Eating Disorders

I am writing this letter, I am sure, on behalf of hundreds, if not thousands and perhaps even hundreds of thousands of families like mine who have a loved one with an Eating Disorder – or have lost a loved one to an Eating Disorder.  All of us share the belief that this is not a disorder, but is a chronic serious illness.  As such, it should really be labeled an Eating Disease.

We also share the frustration and are all fed up with the way Eating Disorders are perceived, misunderstood, and mistreated in Ontario and all of Canada by the health system, health practitioners and medical insurance companies.  Our beloved daughter, now 27 years old, has been struggling with Anorexia Nervosa and Bulimia Nervosa for the past eleven years.  The past 4 years have been the worst for her as this disease has totally taken a hold of her life.  As well, these past four years have been for her and us the most intensive attempts at traditional treatment.  It seems the harder all of us have worked at recovery, the more she has relapsed and become chronic.

We have read and heard enough about the lack of funding, treatment, and education, ignorance, unawareness, and lack of readiness, burying heads in the sand, passing the buck from one clinician to another, and promises of “funding for mental health”. So, it is time for action and time for change.  Change to a system that does not meet the needs of these individuals.  Change to the current “one size fits all” treatment approach and the criteria for OHIP funding.  Change in Eating Disorders education on absolutely every level from parents to teachers to kids to media to governments to authorities and to health care and health insurance providers.  Change in taking down all the roadblocks and dead ends in the courts, hospital emergency rooms, doctors’ offices and other professionals’ offices.  Change in public awareness that this disease is not going away.  As more families are willing to share their pain, it is clear that whatever the triggers, Eating Disorders numbers are getting worse, with onsets as early as 5 years old and mortality rates as high as 20% – more than any other mental disease.*

No community is untouched by this disease whether or not they are exposed to the media and technology.  I know as parents we have done everything possible to reach out to our daughter and made serious life changes to make all of our lives livable. What is required is an urgent next step.

Change needs to happen NOW, not in years to come.  I am ready to advocate and take a stand for every victim of this disease, their families and the future of the way eating diseases are treated.  Just as Terry Fox and his mom made life changes for cancer, I aim to do that for this disease, in the hope that years from now, the current “one size fits no one” system is gone and more victims are able to live the life they deserve. They have the right to “live” and be functional in society their way.

With the help, wisdom and encouragement of out therapist Patti Perry, and incredible support from MP Mark Adler and my wonderful team of volunteers, I am proud to launch the National Initiative for Eating Disorders (NIED). Change is coming!

 

Wendy Preskow
Founder, President of NIED

*American Journal of Psychiatry – Vol. 152 (7) July 1995, Sullivan, Patrick F.