Hello everybody.
As the founder of NIED, the National Initiative for Eating Disorders, I would like to thank the committee for taking on this study of eating disorders among girls and women. 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 28-year-old who has been suffering with anorexia and bulimia for over 13 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 fuelled 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 28, she is a child not only with an eating disorder, but she is also on a provincial disability support program because she cannot work. She is so paralyzed with anxiety and depression, and still expected to navigate the so-called system for help because of her age.
As parents we have been down the roughest, most horrid road ever imaginable, including using tough love at its worst and still knowing we have unconditional love for our daughter.
Siblings, grandparents, cousins, aunts, uncles, and friends are all affected by the suffering of our daughter. Fortunately, Len and I have held and supported each other through thick and thin. Living with this can and does kill relationships and marriages. It splits and isolates families, even forcing them into bankruptcy.
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 profile.
Yes, eating disorders are recognized as a mental disease, but they are seldom mentioned or acknowledged under the umbrella of mental illnesses.
We hear, read, and see all about mental health per se, but eating disorders are not on the mental health radar, programs, campaigns, or agendas.
In mid-July last year, Amy spent a week in a symptom interruption bed in Toronto to help stop the starving binge and purge behaviour. To give you an example, for her this could be both bingeing and purging 15 to 20 times a day and going out in the dead of winter in the middle of the night for binge food in a physical condition where she could have dropped dead at any time. She was consuming quantities of food beyond anyone's imagination.
When I was on the Hill in Ottawa in November last year, she let me know that she had spent $450 on food to eat and purge over three days. Multiple binges include 36 to 48 muffins, 6 to 10 large pizzas, slab cakes, litres of ice cream, mounds of chocolate, and I'm sure there was more to add to this. This happened daily for three days.
You can see how in this state she has resorted to shoplifting to feed her addiction. Unfortunately, when she had been caught in previous occasions and the police were called, she was handled unprofessionally, negligently, ridiculed, and almost thrown into an ambulance. These episodes led to a full-blown panic attack.
She is not a criminal. She is sick and there is nowhere to go for help. How is it possible for someone so sick to be turned away from treatment or not have access to treatment within a reasonable timeframe?
Back to the symptom interruption bed, it worked for her for a week, with Len and I sharing time during the day to be with her. Bullying and gossip arose from other patients, making her so uncomfortable that she left. Leaving a program midstream is extremely common with thousands like her.
Prior to hospitalization, Amy was living in a bachelor apartment with an eating disorder killing her on a daily basis. After she left the hospital, she was so vulnerable that we brought her back to live at home. This became permanent in October.
Like so many other mothers in this country, one of which was with us last week on the Hill, I have been running a 24/7 do-it-yourself treatment centre for her. There is nowhere for her to be or go other than to receive my full-time support.
I know and she knows that she should not have to deal with anxiety, binges, depression, mood fluctuations, while trying desperately and so hard every single minute to not give into the loud, noisy, forceful voices in her head that could lead to more binge behaviour.
If that's not enough, there are times when Len has had to take off work or leave work early to take over from me.
As you can see the impact extends far beyond the sufferer, and affects those directly involved and indirectly the greater community.
I started NIED two 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 across Canada. I am extremely fortunate and grateful for the volunteers who have supported me, and especially the doctors who, despite facing their own challenges within the eating disorder system, have gone above and beyond to support NIED. These include Dr. Blake Woodside, Dr. Gail McVey, Dr. Leora Pinhas, Dr. Mark Norris, Dr. Chuck Emmrys, as well as the numerous MPs and MPPs who have helped to get NIED to where we are today to start the wheels of change.
I totally support the recommendations—