Canada: NIED and Amy's Story

Eating Disorders are brain-based, biological illnesses with a strong genetic component. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

My Story With Amy

As the founder of NIED - the National Initiative for Eating Disorders – I am here today to speak on behalf of hundreds and thousands of Moms and Dads, caregivers and families just like ours.

As parents of a 29 year old who has been suffering with Anorexia and Bulimia for over 14 years, my husband, Len and I have done everything possible – emotionally, physically and financially to provide and help our daughter Amy, and it is never enough.

Our experiences of helplessness, frustration and ultimately anger fueled me to want to create awareness and take action regarding the bizarre and unforgiving world of Eating Disorders. The pain, for sufferers and their families, is insurmountable. The stress and strain on families is extreme, horrendous and devastating.

There is no system in place to help our child – yes, at 29 she is a child with not only an Eating Disorder, but on Ontario Disability because she cannot work, paralyzed with anxiety and depression and still expected to navigate the health system for help because of her age. Impossible situation.

 EATING DISORDERS KILL.

THEY HAVE THE HIGHEST MORTALITY RATE OF ANY MENTAL DISEASE.

Yet unlike depression, schizophrenia, anxiety, and mood disorders, Eating Disorders have NO PUBLIC PROFILE. Eating Disorders are a MENTAL ILLNESS but they are seldom mentioned or acknowledged under the umbrella of mental illnesses. Eating Disorders are NOT on the mental health radar, programs, campaigns or agendas.

Like so many other mothers in this province and country - I have been running a 24/7 do-it-yourself treatment center for her. There is no affordable warm, fuzzy place of healing for her to be in or go to, other than our home and family support. I know and she knows she should not have to deal with anxiety, binges, depression, mood fluctuations on her own, trying desperately and so hard every single minute not to give in to the loud, noisy, forceful voices in her head that lead to more binge behaviour.

I started NIED just over 2 years ago and have been operating on zero funding to create Awareness of Eating Disorder sufferers and their families and to ultimately change and improve the system in Ontario and across Canada.

In closing, and with her permission, I will share Amy’s words from her journal…

Sept 2011…I feel unmitigated fury ripping through my body. Nothing is ok. Nowhere is safe. I hear blood thumping my eardrums, I feel a blazing hot scream trapped in my throat and simmering dangerously. I am cross-eyed with rage toward myself for being alive, toward everyone else who is functional. I want to take a knife and slash my body. Carve off the fat places until only bone remains and everything is quiet. I want to cry, which only infuriates me further. I want to kill myself but don't have the courage, which again ignites the anger. Weak pig worthless ugly insignificant despicable revolting cow.

The minute I had my bite of pizza the chaos in my head stilled. It was instantly balmed like aloe on sunburn. The silence was blissful. And then all too soon the eating and throwing up was over and a shock wave of anxiety seized my body.

Legs like rubber, hands shaking, vision blurred I walked like a dead weight to buy more food.

   

Later that afternoon, after much protest and procrastination I eventually agree to let my parents take me out for coffee. Its the first I've seen them all week since depression rendered me unable to let them love me. My body is with them but I am vacant and nowhere to be found, staring into a murky void only I can see while I habitually check my pulse. It beats the word fat. Fat. Fat. Sometimes its a slow taunt: fat...fat...fat.... then it speeds up: fat, fat, fat. My parents try to make me smile. My heart smiles at this but my lips don't follow suit. Its like my face has been botoxed into expressionless paralysis. My mom and dad continue to talk while I continue to sip my coffee and try focus my eyes.

Feb 2014 . .  . Its the sense of profound fear that I’m not going to make it out of this eating disorder - I'm not going to be the 1/3 that recovers; I may even be in the 20% that die. Mom, you are changing the Eating Disorder world in Canada and perhaps the only reason I ever existed was for you to create colossal change. But what about me, now? It will be years before any such dream treatment facility will be brought to fruition in Canada.

As Amy’s Mom, here I am, on behalf of NIED, advocating to make change and bring public awareness for Eating Disorders - just as Terry Fox and his mom did for cancer.

Thank you for supporting our efforts by doing your part.

Wendy Preskow – 416 859 7571 wendy@nied.ca