Parents Project for Eating Disorders

Open Letter to Parents and Loved Ones with Eating Disorders

I am writing this letter to and on behalf of hundreds, if not thousands and perhaps even hundreds of thousands of families who have a loved one with an Eating Disorder.  We are frustrated, concerned, and fearful each and every one of us.   This ‘disorder’ is a serious chronic illness.

Our beloved daughter, now 26 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 and us as it has totally taken a hold of her life.  These past four years have been during our and her , 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.  I have read and hear enough regarding (1) lack of funding, treatment, and education, (2) ignorance, unawareness, and lack of readiness, (3) burying heads in the sand, (4) passing the buck from one clinician to another, and (5) promises of ‘funding for mental health’. 

It is time for action and time for change.  Change in the system that does not meet the needs of these individuals.  Yes, there are traditional hospital treatment programs, albeit with long waiting lists, yes, the individual must be motivated, yes, early diagnosis, early intervention, better prognosis, but one size does not fit all.  What about the individuals who were not caught or  identified early on, have been through numerous treatments experiences, have reached a point of chronicity and have been repeatedly told, …”… you probably won’t recover…”… ! 

What are the resources for this group of individuals?  Are they ‘throw aways’ because the traditional models have not worked.  How do we help our loved ones live with their chronic disease?   We have resources for chronic drug users, chronic alcoholics, chronic rheumatoid arthritis,  chronic heart disease, diabetes, and a myriad of other diseases, but this group, which have the highest mortality rate of any psychiatric illness, there is nothing. 

We need change and we need action  on every level, treatment, education, management of illness with parents, teachers, clinicians, experts, peers, and students .  In addition, professionals need to be informed and educated from the courts, to staff (nursing, social work, physicians in the hospitals and emergency rooms.

It is essential that we increase public awareness that this disease is not going away.  More families and individuals need to step forward and share their pain and horror stories of their suffering and attempts at treatment.  This disease is getting worse, it is moving in to chronic, long standing problems, the onset is earlier and earlier.   We, lay people hear stories of 6 and 8 years olds who are suffering.  No community is untouched by this disease.  

As parents we have done everything to reach out to our daughter, and have made significant life changes to attempt to make her life more liveable.  As parents we have  made every effort to  separate our relationship with her eating disorder, from our relationship with her.

But what is the next step.  We are not prepared to continue to sit back and wait for change to come years from now.  I am ready to step forward and advocate for every victim of this disease, their family and friends to change, enhance, alter, add to the body of knowledge of the way eating disorders are treated and managed.  Just as Terry Fox and his mum, Betty,  put cancer on the front page and raised millions of dollars to advance research and treatment, I am determined to do that for this disease. My hope is that in years to come, the current premise of “one size fits no one” treatment system is gone and victims will move to survivors and thrivers and be able to live the life they deserve in spite of having a chronic disease.  They have the right to “live” and be functional in society their way.

I am fed up with the absurd comments and statements form MPP’s, doctors in Emergency  who are mentoring other professionals who have little or no trainings as well as understanding of this disease.  Valid attempts at becoming involved at as a volunteer  have resulted in not even an acknowledgment that the phone call, email or letter was even received.

The time for action is now.  I know there are other parents, family members and loved ones who feel the way I do.  It is time for us to come together and be heard.

Please send us an email at patti.perry@eatingdisorders.ca