As we approach National Eating Disorders Awareness Week (Feb 1-7), I’ve been thinking a lot about my own eating disorder.  I’ve also been thinking about some of the common misconceptions there are about eating disorders.

One of the myths surrounding eating disorders, that I will discuss in this post, has two parts.  The first part is that eating disorders are  the same as dieting and are about being thin.  The second part follows, that they are about getting attention and meeting societies/media ideals of beauty.

I’ve struggled with anorexia for 20 years.  In my own experience, anorexia bears no resemblance to “normal” dieting that most people engage in at some points in their lives.  It is a serious mental illness, with severe physical and psychological impacts and side effects.   In my experience, anorexia was not about being thin, at least not at the beginning.   It certainly was not about getting attention, or competing with media ideals.  A good portion of anorexia was about disappearing, taking up as little space as possible and was fueled by intense shame and embarrassment, NOT the desire for others to notice me.

I went to, and go to, great lengths to hide my anorexia from others.  In fact, there are large aspects of my eating disorder I’ve never spoken about to anyone.  I rarely talk about it in therapy, I almost never disclose details to friends and family and I tend to keep it secret mainly due to shame and guilt and fears that others will view me as stark, raving mad…if they really knew.

After struggling with anorexia for 20 year, I have osteopenia.  This means that I have low bone density for my age.  I had low bone density before I was 30 years old. This is a common physical impact of eating disorders.  I’ve struggled with low iron levels which causes low energy, dizziness and fatigue.   As I age, I find I have less tolerance for restricting food.  I get dizzy, tired and have trouble focusing.  Symptoms I didn’t experience as a teenager.

But I’m lucky.  I have friends who have had heart attacks, passed out daily due to low potassium levels, lost all their teeth due to purging, have had broken bones due to osteoporosis and those who have lost their lives.  Eating disorders kill.  These people didn’t die because they wanted to look like the models in magazines and the stars in Hollywood.  They died because they couldn’t escape from a serious mental illness.

People who have eating disorders aren’t vain.  They aren’t making a choice.  Anorexia isn’t a lifestyle choice.  It’s a serious mental illness.  It’s often a coping reaction to experiencing abuse, trauma or extremely stressful life circumstances.

Anorexia isn’t about getting attention.  When I was at my sickest, I would rarely eat around other people.  This led to social isolation, rather than attention seeking.  I saw friends and family less, I spent a lot of time alone in my room. I would eat either before my family got up, or after they had finished in the kitchen.  I avoided social occasions where food was involved (in other words ALL social events).

I was deeply ashamed about the majority of my eating disorder behaviours.  I still am.  When I look back on those years, I feel the need to apologize to everyone I knew back then.  I want to apologize to them for making them look at 85 pound me.  A skeleton in a skirt, drifting through the halls of our high school like a shadow.  I feel embarrassed.  I know that I looked awful and that I scared a lot of people.  People who cared about me and were worried that I might die.  But quite honestly, I didn’t even really believe that I was sick.

I felt like I was living on autopilot.  I felt driven and I couldn’t stop.  I couldn’t slow down.  I didn’t exercise at the gym, but I used to walk long distances.   With the amount I was eating even daily activities were over exertions.  I had so many rituals it was amazing I could keep track of them all.  I would measure my food, eat certain foods only on certain days, eat or drink certain things only at certain times of days.  I drank a lot of coffee, tea, water and diet coke.  I drank fluids to avoid eating, but I was later told that staying hydrated was probably a good part of why I had so few negative side effects at my lowest weight.

If you had asked me, I probably wouldn’t have identified myself as someone with an eating disorder. I was confused.  I didn’t even know what I was doing or why.  All I knew was that suddenly food was my enemy and I felt that I could survive on almost nothing.   The anorexia always had an obsessive compulsive quality to it, the rituals were designed to keep me safe, not to alter my weight or physical appearance.  I was never trying to lose weight.  I was trying to control my trauma, my body and to numb out my feelings.

In the warped and bizarre world I lived in, slicing my half a banana into exactly 11 slices on my 1 cup of cereal kept me safe.  In that world, I could buy a cookie on Tuesday and Thursday only. I had to break that cookie into exactly 4 pieces which I would eat at specific times over the course of that day.

I used to go to the library sometimes after school and read books.  I remember one day my willpower failed and my hunger won. I ate my whole cookie at once.  I panicked.  Extreme panic.  I don’t know exactly what I thought was going to happen, but it was terrible and  I couldn’t undo it.  I knew from reading books that bulimia existed.  It was something I’d never explored, I never really ate more than a small amount at a time.  But somehow on that day, that cookie felt like a binge. I felt like the world was going to fall apart because I’d broken my ritual.  I went into the washroom at the library and tried desperately to make myself sick.  I wasn’t able to. I never have been able to (probably a good thing).   I remember crying and panicking and not knowing what to do.  Eventually I must have just gone home.  I remember feeling so very alone.

I’ve never told anyone about that, because of the intense shame I feel about behaving so strangely, in a way that I can objectively see makes very little sense.  This is why I don’t believe that anorexia is a cry for help, or a plea  for attention, because the majority of it happens in secret.   Sometimes I’ve been reluctant to share details about my eating disorder because I don’t want to trigger others or give people who are not in recovery ideas about behaviours.

Objectively, I can see that anorexia doesn’t make sense.  I can see that my obsessive compulsive habits, rituals, and rules don’t make sense.  I can see that they don’t make me safer or protect me. I can intellectually understand the health risks of not taking care of my body.  In my mind, I know that eating normally and being at a healthy weight would improve my mental health and that nothing bad would happen to me.

But Ana, spins a different web of lies in my head.  The fear of what could happen, the anxiety drives the OCD cycle of obsessive thoughts leading to ritualistic behaviour related to food.

I actually see Ana (my eating disorder voice) as a separate person.  I have a visual image of her in my head.  I experience her telling me things and I feel I have to listen.  She’s angry.  I know she isn’t a good friend and the majority of what she tells me (if not everything) is a lie.  But I feel some strange loyalty and attachment to her.  It’s hard to let her go.  I sometimes feel like I’d be lonely without her.

Eating disorders are serious mental illnesses.  You don’t have to fully understand my experience, in a way, I’m glad if you can’t understand it, because it means you haven’t lived through something similar.  But the stigma and myths about anorexia and other eating disorders need to be challenged.  People with eating disorders need your compassion and they need specialized, accessible and trauma informed treatment options in their own cities.  There is a woeful lack of eating disorder treatment available and people die while waiting for treatment.  Ending the stigma and increasing public education about these serious illnesses can help change this situation.