Eating Disorders – Describing the Indescribable

Eating disorders are a prevalent, severe and hidden mental illness in our society. It is almost impossible to describe what’s happening in the mind of someone with an eating disorder. Recently, I saw a video clip from CTV News; it was an interview with Elaine Stevenson. Elaine is an incredible, courageous, compassionate and intelligent woman who has fought for better treatment of eating disorders for over two decades. She lost her daughter, Alyssa, to an eating disorder.

Eating Disorders

Alyssa fought for many years; suffered for many years. I will never forget her funeral. The music; the slideshow. The deep grief and defeat that I felt. I will never forget what it was like to believe for years and years that my fate was identical to Alyssa’s. Or to sit on Elaine’s couch and listen to how it happened and despite her tremendous loss, she continued to encourage me to persevere. To not give up. Her love and tenacity never grew dimmer.

Here is the CTV video clip.

Adolescent day program

My heart hurts for Elaine. In the video they mention the opening of the adolescent eating disorder day program; May 8th 2001. It was a new program in the province that allowed adolescents to attend a full day and go home at night. I was admitted to the program with three other people on May 8th 2001. I didn’t have to walk very far to get home. The inpatient adolescent treatment centre was right across the hall; it was the home of many suicidal, suffering teenagers. I remember them all very well. It was a short commute to and from the program.

Time didn’t fly

This is the first time I have really written about my life back then and it was only recently that I realized it has been 19 years. People often look back at something that happened almost twenty years ago and say “wow, it feels like yesterday. Time flew by”. That is exactly the opposite feeling I have when I think of my life back then. It didn’t fly by. It doesn’t feel like yesterday. And I pray it never feels like ‘today’ again.

The inpatient ward and adolescent treatment centre were my home for many months of my last year of high school and I remained there until I turned eighteen. Then I left the country because I was so ashamed of what my life had become. I wanted to run as far away from the nightmare as I could. Unfortunately the nightmare came with me. My most recent visit to an inpatient eating disorder treatment centre was at age 29; it was a three month stay in residential treatment.

The seeds of darkness

The seeds of my eating disorder began at seven, the thorns began to grow by eleven; the weeds and bushes got bigger and bigger. By the time I was fifteen, I lived in a forest of nightmares. I stayed there for more than two decades and a small handful of people knew.

Now that I am many years into recovery, I can speak about the phases and layers this horrible illness has on peoples’ lives. I never wanted to speak of it because of the stigma. Because of the indescribable parts of it. It is not something you can see or determine a person has by looking at them. Anorexia Nervosa is the most fatal mental illness. People who have eating disorders are ashamed of them, hide them and in the saddest scenarios, die from them. Over one million Canadians suffer from an eating disorder. One million.

Getting treatment

The wait list for treatment is often longer than a person has to live. In my late twenties, that was my reality. I wasn’t a teenager desperately reaching out for help through my restriction of food. I was an adult with a full time job who appeared to be fine; secretly hiding the understanding that I was going to die and I wanted that. I could not fight anymore. I didn’t want treatment or anyone to help me. All systems felt like failures to me and when people said ‘eating disorders are for life’, I believed them. So I wanted my life to end as quickly as possible.

You can’t possibly know what it’s like unless you’ve experienced it. I can’t begin to describe the insurmountable judgment said directly to my face about having this illness. It has caused me to want death. I attended a death meditation retreat so I could prepare myself for death. I’ve always been a good planner. I came to terms with the concept of terminal illness, gave my own eulogy and said goodbye to myself as a woman, daughter, friend, coach, employee and human being.

Indescribable

Again, you cannot possibly know what it’s like unless you’ve experienced it. The most important reason I decided to write this and finally tell a piece of this story is to ask, on behalf of every single person who has battled an eating disorder, please do not make a judgment about this illness. You don’t know the story of anyone’s suffering but your own.

You don’t know what that person went through, is going through or how badly they wish they could fix it. No one, sometimes not even the person suffering, knows what caused that eating disorder but if you did truly understand, I swear to God you would never judge another person with an eating disorder again. Because it may be the worst, most traumatic story you’ve ever heard. YOU may feel like vomiting from hearing about that person’s life. I’ve heard every story. Every possible tragic story that led teenagers like myself to want to end their life. I lived with those teenagers. It is a living Hell. You can’t escape food or avoid it; you can’t figure out why it’s your enemy. It is the WORST.

You can’t see it

That person who you think is over-dieting or over-eating may be trying to cope with something you can’t possibly fathom living through. That you can’t possibly fathom exists. Something inside them that they have no control over, but is a deep suffering. Rage and fear turned inward. I lived with teenagers who witnessed death, suicide, sexual abuse. Watched people get shot, get raped; watched a sibling hang themselves or watched their significant other kill someone. Teenagers who spent their childhood being assaulted by a parent, a teacher, a coach or a babysitter. People who watched one of their parents kill the other. Watched their friend die in front of them. These are not made up stories.

These are the lives of people I know. People I love. Young people who lived through these atrocities. Could you?

Don’t judge. You have no idea what’s behind an eating disorder and I promise you this; it has nothing to do with food.

The feeling

I want to try to describe the feeling. The motivation and relentless urges; the darkness and the recovery journey. If you are suffering from an eating disorder, I hope you feel understood. I hear you and see you. If you are trying to support someone with an eating disorder, I hope this provides insight and perspective. Perhaps even resources and a new approach for helping someone out of the darkness. Don’t give up; that person doesn’t want you to leave them. I promise, they don’t.

An eating disorder is not one thing. It appears differently in each person. My lens for this discussion is as an adult today and remembering the view of the world through the eyes of myself on May 8th, 2001. My first day in the adolescent eating disorder program.

ED myth busting

Let’s cut through a few myths about eating disorders. I have read that some people with eating disorders experience other mental illnesses, such as anxiety, depression, obsessive-compulsive disorder or post-traumatic stress disorder. The reality is that ALL people with an eating disorder will experience at least one (if not all) of the above.

Happiness juice

Serotonin is a neurotransmitter that mediates happiness and optimism. In clinical depression, serotonin levels are reduced. Not enough serotonin and you will become depressed. That is scientific fact.

How do you get serotonin in the brain? It cannot be made in the body without an amino acid called tryptophan. It is a critical part of the body being able to make serotonin and has a significant role in healthy sleep. Tryptophan cannot be made in our bodies. Do you see where I am going with this?
Tryptophan can only be obtained through food. Serotonin cannot.

Tryptophan is what helps the body make serotonin. When you have an eating disorder, you are not ingesting tryptophan (food) and are therefore not making enough serotonin. What this means is the EVERY person with an eating disorder will be depressed and have poor sleep. You need tryptophan obtained through food in order to sleep and to produce serotonin, which regulates happiness. Having an eating disorder means you cannot sleep, you are depressed and your body is going through starvation. Believe me. No one chooses this.

Triple Vulnerability

Who is at risk for an eating disorder? There is something called the Triple Vulnerability. Three factors that come together in order to create a perfect environment for an eating disorder to develop. Those factors are; biological (genetic and biochemical), psychological (personality and mental health), and social (what happened in your life). In someone predisposed to an eating disorder, hitting all three vulnerabilities in a particular way is a perfect storm.

Body type

Another myth that is important to discuss is body type. You cannot tell if a person has an eating disorder by looking at them. You also cannot tell if a person has an eating disorder by eating a meal with them. People who have eating disorders are the best secret keepers in the world and if they don’t want you to know, you won’t. Period. The secret keeping part of an eating disorder is, in my experience, the void in which you live. That brings me to my next point.

Why won’t you eat?

An eating disorder is a language. I should preface this with a statement that I beg you to never say. To never think. This statement can kill someone and it has; I have seen it.

“They just wanted attention”.

Someone with an eating disorder doesn’t want attention drawn to them for the reasons you may believe. They actually want to disappear. When this statement is made, it is the fastest way to cause someone to want to give up the battle. You know why? They are fucking dying inside already. They have so much guilt, grief and suffering inside them that you don’t know about. They have no words for what is killing them. Minimizing a mental illness that is potentially fatal into an attention-seeking game is a gun shot to the heart.

Attention or connection?

An eating disorder might be what you call a cry for help. A scream, in fact. The problem with this is that we have the attitude that it is weak, shameful or selfish to cry for help. I have heard people say that dying from suicide (or attempting it) is a cry for help.

What louder cry can you imagine for something indescribable? A suffering with no voice?

If someone dies from suicide, can you truly and honestly cast that away by saying “it’s a cry for attention?“. That person is dead. You missed your chance at offering attention – help, compassion, understanding. They don’t want attention anymore; don’t be the person who believes this ignorant statement or minimizes suffering.

The kids

We have an attitude toward children that is being rephrased by many parents, including myself. It is a shift from looking at a child’s behaviour and saying ‘they want attention’ (which carries a negative connotation) to ‘they want connection’ (quite a bit different). Why wouldn’t a child want to connect? It doesn’t mean constantly doing what your child wants or passive parenting. It’s recognizing that our old saying of “wanting attention” has caused a lot of people to suffer alone, feel judged, ashamed and perhaps even cost lives. Wanting attention is wanting connection.

What would you say?

If you went through something so unbelievably horrific that you could not speak of it, or perhaps you didn’t know what was causing all your suffering, what would you do? What would you say about something you couldn’t name? Your only refuge is to control something, anything in your life. You don’t want to die but have no words to say “help. Please help me” and so you starve, binge or attempt to end your life in a way that you can still be saved. You want to be saved. Then you hear someone tell you it was just for attention.

If that doesn’t get their attention, where do you turn? You’re willing to starve yourself to death in a desperate attempt to say “something is wrong, please help me” and instead you are judged.

What if that person wants attention because they need it? What if that eating disorder is the only language your child has to say to you “I am crippled with suffering inside. I can’t help myself. If you don’t help me, I will die“.

You can’t see the cause

If you watched the clip of Elaine Stevenson speaking on CTV, you hear her say that her daughter Alyssa suffered trauma in her childhood and that it was only after her death that her mother found out. That portion of the video broke my heart. It broke my heart to know that Elaine didn’t get the chance to learn of that trauma before Alyssa lost her battle. Perhaps it would have made a difference; perhaps not. I have no idea. It would have been a piece and that’s important. If a person is safe and treated by compassionate, understanding medical professionals then perhaps, perhaps their full suffering will tell its story. It needs a voice and often, that voice is the eating disorder.

If your child has an eating disorder, don’t you want that suffering to speak to you before it is too late?

I’m not done

I used to tell my parents as a child that I couldn’t eat because I wasn’t done having an eating disorder. My poor parents, worried out of their minds, would say “being done is dying. You aren’t going to be done – there is no done” and that is absolutely true in a sense. Often being done with an eating disorder means you die. Again, I’ve seen it. Watched it. It was almost me so many times, however, from my lens now as an adult remembering my time in the thick of it, I can tell you what it means to ‘not be done’.

It means no one has heard you. The eating disorder is all that’s keeping that person alive. It is serving a tremendously important purpose and until you know the root, the story behind the darkness, the eating disorder is not done. I was not done because I hadn’t been heard yet. Everyone with an eating disorder is desperately trying to survive the indescribable suffering inside them and that story is different for everyone.

What is recovery?

I have battled with my eating for so long that I can feel now how much of it is physiological. Changes have occurred in my brain and gastrointestinal system; digestive processes didn’t exactly evolve as they normally would. I consider myself in control of my eating now. That doesn’t mean that I take a day off of recovery and it doesn’t mean that I eat the way society expects me to. There are no rules to eating. We’re all different. Fueling the body is what matters.

Recovery means that I know how to nourish my body, I am vigilant, I know my triggers and I am not afraid to get help. If I feel eating disorder thoughts arising, I know that biochemically my brain has approximately three weeks before it returns to the state of perpetual starvation. The brain shifts. And once you recover, it can still shift back. You can’t take a day off and you can’t expect yourself to be the person you would have been had you never had an eating disorder. It is not possible. You work and never give up. Never.

Walk a new path

One very important guide in my life was my dietician; I still consider her to be one of the smartest people I have ever met. She taught me how to live with food; how to accept my body, life and make food work for me. My own daughter will have a happier, healthier life because of the immeasurable lessons she taught me.

One day, she sent me this poem by Portia Nelson.

“I walk down the street.
There is a deep hole in the sidewalk.
I fall in.
I am lost… I am helpless.
It isn’t my fault.
It takes forever to find a way out.

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place.
But, it isn’t my fault.
It still takes me a long time to get out.

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in. It’s a habit.
My eyes are open.
I know where I am.
It is my fault. I get out immediately.

walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

I walk down another street.”

The recovery street

The irony and beauty of this poem is that the old street is not gone. It’s never gone. My wise dietician also used the metaphor of building a new path in the forest. Bushes and leaves hitting you in the face; a path you have never walked that is painful, confusing and hard to get through. Once you walk down the new street, the new path, you get used to it. You practice. You know the feeling of the new path and eventually, you start to call it ‘life’.

The old path is still there; the other street is not gone. Would it be easy to walk down that old street? Of course. You’re familiar with it. You lived on it for months, years; decades. Wisdom comes from knowing when you’ve started looking at the old street. In that moment, you reach out for help. You do not walk down the street; you notice what’s happening before you fall. You do not let yourself relapse because you can’t unlearn what you’ve learned. You reach out for help because you know the old street; the old path; it leads to misery.

Four truths

Truth 1

An eating disorder is a symptom. Controlling food is often all a person can control, especially if they have lost control of parts of their life or body during formative years. Wanting to control food is a symptom. Being thin does not lead to happiness. Starvation and obsession with food is not fun, we didn’t choose it and a comment that paints an eating disorder as some vain, over-dieting, slim-fast journey is flat out harmful. If you think this, just don’t talk.

Truth 2

We know that there are people starving all over the world. We know it more than you can imagine and we use this fact to tell ourselves how worthless we are, how undeserving we are of help and how much more we should hide our eating disorder until we finally die. If you want to say this to someone with an eating disorder, again, don’t talk.

Truth 3

Eating disorders are not a choice. No one would ever, ever choose to live like that. If you believe that someone with an eating disorder is having a great time, you are projecting your own issues and inadequacies on a person who is already in a deep depression. Just don’t. You can’t choose to have an eating disorder. If you think you can and it’s all about being thin and happy, by all means give it a try. You won’t get anywhere unless you’re predisposed for it and you are fucking lucky that you’re not.

Truth 4

Treatment is needed

There is so much I could say, try to describe or illustrate about what it’s like to live with an eating disorder. For me it has been a lifetime of phases; darkness to light and uncovering layer upon layer of proliferated pain. I wish more than anything that treatment was not only more available, but that society as a whole understood the complexities of eating disorders. If it was so, I believe there could be a more compassionate approach and understanding to patients with eating disorders and a much higher rate of recovery.

Eating disorders aren’t glamorous, fun or a choice. They are an unyielding pull into a dark place that no one can understand; an indescribable feeling of shame, secrecy and confusion about the self. They become your identity and it takes a truly heroic effort to help someone out of them. And a truly heroic effort to keep yourself in recovery.

Every single day in recovery has been easier than living with an active, life-encompassing eating disorder. But there is no day off in recovery. Don’t let this dissuade you if you are suffering. I made it despite all odds.

You will too. Your pain is not your fault. Your illness is not your fault.

Full recovery is possible.

All of us have suffered. What helped you?

How can we help others?