Yesterday was a watershed day for us. For Emily because she finally gained the confidence she needed to try recovering at home, for all of us because she is being discharged on Wednesday and for me because I got to read a book called 'Eating with your Anorexic' that lifted the veil on my distorted and painful feelings of guilt. The book is written from the perspective of a mother of an anorexic daughter, and as I read her description of what she witnessed and experienced as her daughter was sucked under by the disease, I felt so much relief to learn that I wasn't alone in my ineptitude, that I literally took my first real breath in three weeks.
The author, Laura Collins, wrote, "In August before grade ten, this smart girl began to believe that 1,000 calories was too much food for one day. If she ate breakfast she felt unentitled to lunch. She referred to water as good and bread as bad.
If it were little green men she saw, instead of what she saw when she looked in the mirror, we would know what was delusion and what was not. Our family's anorexia awakening lacked that clarity.
I still wish it were little green men: I think they have a pill for that. And even if they don't, that sort of delusion isn't life threatening. Eccentricity you can live with. But this thing that was happening to her - that changed her so completely- this wasn't benign or a curious phase of dieting. This was horrifying and immediate and scary. The girl we knew was no longer there, no longer rational, although we tried to treat her as if she were. Her mind and body were fading as if her life's blood were being drained away. In fact it was."
The author goes on to describe how her doctors didn't recognize the illness for what it was even when she laid out the symptoms, the irrational behaviors and thoughts and said she believed her daughter was anorexic, her doctor said, upon examining her daughter, 'You should probably eat more, but you are still doing all right.'
It seems that part of the problem is that the actual definition of anorexia precludes many people from being diagnosed until they are so severely ill that recovery is almost impossible to achieve. Regardless of your delusional mental state, you have to be 15% below your ideal body weight and you have to have stopped menstruating for three consecutive months if you are female in order to be officially diagnosed as anorexic. So the day before you reach 15% below ideal body weight you aren't anorexic, in their eyes you are just suffering from disordered eating and it will probably work itself out. Or if you are like Emily and haven't started to menstruate you can never be technically diagnosed as anorexic even though you probably haven't started because of the starvation. So doctors, who don't see a lot of patients with eating disorders, are looking for the symptoms they have learned and are not inclined to react until those conditions are met.
The problem with this approach is that when your doctors put your mind at ease you suppress your internal warning bells and then because you don't know the language and culture of 'anorexia', you don't know that starvation causes an obsession with food that leads to reading cooking magazines, planning and serving meals to everyone else, that horrible, disgusting 'pro anorexic' websites are teaching your child the ways and means to support the disorder and that a desire for a bracelet of red beads is a way to show off your 'pro ano' life style, and a broken arm is an attempt to take your mind off the food obsession through physical discomfort. You don't know that being cold all the time, dizziness, indecisiveness and social withdrawal are all signs of starvation. And you don't know that your child's heart muscle is so weakened that a hot shower could stop it. You don't even know that you don't know.
But thankfully we know so much more than we did three weeks ago. We know what we need to do and how we need to do it and tomorrow we get to put it into practice and Emily is ready to let us put our new skills to the test at home. I know so much more than I ever wanted to know about this horrific and devastating disease. I know that I need to shed my own obsessions with weight and body image in order to be able to be a true role model for her. I know that we all need to stop wounding ourselves with negative self talk about food and guilt and carrying extra weight and not exercising enough or over exercising for the wrong reasons. I know that my issues with food did not cause this disease in her, but that this disease is going to help me to reshape myself. How ironic is that?
So here is what the next few months will look like for us:
All meals are carefully planned out to meet Emily's nutritional and preference needs.
Meal and snack times are fixed as much as possible:
For now she will not be involved in meal preparation or clean up and will only have to worry showing up and eating. This is to relieve her from her food obsessions.
We will take 30 minutes to eat together, during which time our job is to distract Emily from the overwhelming anxiety she experiences when eating. We will also gently point out her disordered eating behaviours which she does unconsciously like taking very small bites, eating easy foods first, not using utensils (it slows her down), eating from everything from left to right, pushing food around her plate.
Then we will spend 30 minutes together after each meal to keep up the distraction and prevent her from purging.
We will track and record everything she eats and doesn't eat.
We don't try to bribe, negotiate, threaten, use guilt or tricks of any kind to get her to eat.
We will spend 2-3 hours per week at the clinic working on the treatment by reflecting on what is working and problem solving what is not. Emily will be weighed and will receive personal therapy to help deal with the issues of body image, perfectionism, hyper self criticism and self esteem.
When she is ready she will start doing school work at home and then returning to school on a gradual basis.
She will gain control over her own eating one snack and meal at a time and as she and the team feel she is ready.
We will do little projects like dining out or having someone join us for a meal - she hates anyone seeing her eat- and letting her make some food and quantity choices.
She is allowed to help me bake cookies or muffins if she is able to partake in eating them.
We will not talk about anything remotely related to dieting, weight, calories, clothes too tight etc., etc....
I will continue with healthy amounts and types of physical activity
She will be advised on what kinds and amounts of physical activity she can perform. It's a slow transition from 22 hours of bed rest a day to being up and around for 16 hours a day. And she still isn't eating enough calories per day to support normal activities and gain weight.
Initially she isn't allowed to do any physical activity but she is permitted to go apple picking in 10 days - yippee!!!
In between meals, we are going to totally ignore Ed and carry on as though he doesn't exist.
We invite all of you to join us between meal times to help keep our lives ticking along in as normal a fashion as we ever did, not that I am claiming it was normal before!