It’s not for attention, it’s a serious mental illness.

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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.

 

 

 

 

Everything in my life was preparing me for this.

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January 5, 2016

A night I will never forget.

One symptom of obsessive compulsive disorders is strange intrusive thoughts that are worrying or scary, but not particularly realistic or likely to happen.  I have quite a number of these strange thoughts, which I rarely share with others.  I worry that people will think I’m crazy or bizarre, and I feel ashamed or embarrassed to admit them.   One of my OCD recurring thoughts involves a terrible fear that while I’m driving someone will step out in front of my car, or push someone in front of my car, or a car around me.  Essentially, that I will unintentionally kill someone with my car or witness someone being hit by a car and dying.

I think of it whenever I drive and I’m often quite vigilant, keeping an eye on pedestrians and looking carefully at people on curbs, bicycles and around blind corners.  Generally this level of hyper vigilance is unpleasant, stressful and unnecessary.  I get startled easily when I drive, especially when my PTSD is triggered. I’m very alert, and in reality,  I’m a very safe driver.

That night, my OCD saved a life.

I was supposed to be at a work meeting, but instead I was driving down a busy road in the city where I live.  It was dark, rush hour, and I was heading to a meeting with my lawyer.  I was driving over a bridge which crosses over a railway track when I saw the thing my OCD brain had been looking for for years.

There was a young woman standing on the edge of the railing.  Clinging onto it, in a shaky, desperate way.  A young woman about to jump to potential death.  A young suicidal woman.

I slammed on the brakes, ignoring the traffic, jumped out of the car into the cold winter night and walked very slowly towards the young woman.

My internal dialogue went something like this:

If this woman jumps to her death you are going to witness it.  You are going to be traumatized and you are going to be impacted by witnessing her death.  This is going to be awful.   But you have to try to help her, you can’t do nothing.  You have all the skills you need to help her.  You have the training, you have the work experience, you have the life experience, you are the only one here and this is the only chance she has.  You have to try. You can do this.”

All that happened in the split second it took for me to walk closer enough to speak to her.

She was crying, shaking, trembling and balanced just barely on the railing.  Sometimes holding on, sometimes standing up and trying to let go. I spoke to her gently.  I told her I wasn’t going to call the police.  I told her I was a support worker and that I just wanted to talk to her.  I asked her to step down off the railing just for a moment to talk to me.  I reassured her that I wasn’t going to call anyone or do anything, just talk to her.  I told her my name, I told her where I worked.

She got down from the railing and back onto the railing a few times.  I kept talking to her gently and reassuring her.   Eventually I was standing quite close to her.  I told her that I’d felt suicidal before, that I was sorry she felt SO bad that she wanted to hurt herself, I reminded her that I just wanted to talk to her.   I have no idea how much time went by, but I think it was only a matter of minutes.

Finally she got down and turned towards me.

“I’m cold” she said.

And I knew I’d made the connection.  The immediate danger was over.   We both breathed.  I asked her if she would come with me into my car so we could talk and I could drive her off the bridge.    We walked to the car and as I got into the drivers seat the world reappeared.  I was suddenly aware that my car was blocking a lane of traffic, cars were honking and passing and drivers were annoyed.  I had tuned it out completely and was only aware of the young woman.

I also became aware that literally not one of those cars had stopped, offered to help or called for help.  I felt the desperation of that poor woman, knowing that nobody in the world cared about her.

We sat in the car for a second, shivering and I could see her panic again.

“I’m not supposed to get into the car with strangers”

Luckily, I had my business card and a pamphlet from my workplace in the front seat.  I reassured her that I was just trying to help her and I just wanted to drive her off the bridge so we could talk.  She agreed and we drove down to a gas station which was just a moment away.

We talked for a little while.  I told her a little bit about myself, the work I do helping abused women.  I asked her if what was making her so upset that day had anything to do with that and she nodded.  I asked her if she’d felt that way before and she said yes.  I asked her if there was anywhere I could take her, a friend’s house, the hospital and she said  maybe just to the mall nearby where she could catch the bus.

I could tell the immediacy of the crisis had passed for her.  She seemed exhausted.

I drove her to the parking lot of the mall and we talked a little more.  I invited her to call my organization for help anytime in the future.  I thanked her for trusting me and for coming down from the bridge.  Before she got out of the car she told me:

“If you had been a man, I would have jumped.  If you had called the police I would have jumped”

She thanked me for saving her. I asked her if she would tell me her name.   She said she wasn’t in the habit of getting into the car with people she doesn’t know.  I told her under the circumstances I thought it was the lesser of two evils.  We both laughed for a moment, she hugged me, told me her first name, and then she was gone.

The second the door of the car shut I burst into tears.  My whole body was shaking.  The reaction of shock hit me once she left, and all the fear, tension and emotion of the past 45 minutes washed over me.

But I wasn’t just crying for that young woman.  I knew that I couldn’t control what might happen to her after she left my car.  I knew I’d done my best and that my best had been enough.

I was crying for Darlene, for Irene, for Lexi…and for my dearest Marian.

Why was I there, at that moment, on a bridge with this complete stranger?  But I didn’t get to say goodbye to so many of the friends I loved?

I felt an amazing sense of love and wonder at having saved a life, amazement at the randomness that I was there at that exact time, and that it was me and not someone else.  It didn’t seem random at all.  It seemed like everything that had happened to me in my life had lead me to that exact moment.  Trained me and given me the exact skills I needed to talk that woman off the ledge.   It felt like a moment of spirituality, connection and higher power.

But my sense of wonder in saving that young woman, didn’t erase the sorrow that I wasn’t there to save my friends.  Or even to say goodbye.  They are gone now, but I hope that woman from the bridge is still okay.

Body Positivity is a Mystery

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<trigger warning for those with eating disorders>

This picture was taken 5 years ago.  I haven’t owned a scale since.  To me, a scale is an actual weapon that only causes damage and pain.  I can’t be around them.

Ironically, when I first became anorexic, I never weighed myself.  I didn’t own a scale and anorexia wasn’t about achieving a certain weight or ideal of beauty.  It wasn’t about how I looked, it wasn’t about my body.  Anorexia was a complex and deadly form of disassociation, which over time turned into equally deadly obsessive compulsive disorder.  So my eating disorder was not about losing weight, but losing weight was a side effect of my eating disorder.   This is a really important thing for people to understand.

Over time though, sexual assault and anorexia F#@ed up my relationship with my body.  And as a woman, patriarchy and ideal standards of beauty and thinness began to impact me.

As I began to “recover” the first time (I was forced to gain weight),  I was terribly uncomfortable with my body.  I equated safety with taking up less space, being smaller and following my strict food rules.  Anorexia means that I feel extreme levels of anxiety when I break my food rules.   Today, in imperfect recovery, I have fewer rules and more good days, but ultimately, the terror remains.

The terror of becoming “fat” and being out of control and unsafe.

I’m going to admit something terribly un-feminist.  Even though I read blog posts about body positivity and I fundamentally hate fat shaming, I am puzzled by larger, rounder bodied and fat people.  I’m not judging them.  I don’t think they are weak or lazy, or those negative stereotypes that the media forces down our throats.  I’m just puzzled and curious.  I really honestly want to know “how is that fat person comfortable in their skin?”  I want to know because if I could figure that out, maybe I could accept myself.

I’m tortured by the feeling of clothing being tight on my skin.  Some days I can’t wear certain clothes just because of the way they touch me and make me feel “fat.”   So how do many people I know, who are rounder and love themselves, achieve this self love?  I’m struggling just to tolerate my body.

I’ve been in told in therapy that “fat” isn’t a feeling.

That “fat” is a code my mind has made up, as a cover story for real underlying feelings.  Objectively, my body is not fat, large, or round.  It’s also not unusual, it’s not disgustingly ugly, it’s not misshapen or weird.  It’s just a body.  Most people would say I have thin privilege and that I’m ridiculous for thinking I’m fat.  And even if I were fat, that would be okay.  I believe that intellectually, about other people.  I’m not judging others, I am holding myself to a standard I would NEVER apply to a friend or even a stranger.  I love your body, I will fight for your right to body positivity no matter what your shape is.  But I hate my own body.

“Fat” is not a feeling.  I think the feelings I have are shame, sadness, anger, grief, guilt, fear and many others.  But when I feel “fat” it’s not about my weight, any more than my anorexia was originally about my weight.  I was never fat. “Fat” is about the shame I feel as a survivor of sexual abuse.  “Fat” is about feeling my own body betrayed me.  “Fat” is about me blaming my body for the abuse.  “Fat” is me thinking that if I had no body I’d be safe.  “Fat” is my fear of being assaulted again.

I never weighed myself.   When I was in treatment, they weighed me and I stood backwards on the scale.  After leaving treatment I continued this practice at doctors appointments.  A few times over the years, I knew my weight.  But whatever the number, I was unhappy.  The number was never okay.   At various times I had F#%ed up goal numbers, but they were not based on anything other than pure magical thinking.  And they never correlated with my actual healthy weight range.

In 2011, I was struggling with abuse in my marriage.  I was in school and I was struggling with that too.  As I would take the bus home from school, I sometimes snuck into a store and used the scale there to weigh myself.  I’m not sure why I started doing it.  But my OCD anorexia mind told me it would keep me safe and comfort me.  I did this for probably a month or more.  I was consumed with guilt and shame.  I never told a soul.   Then one day I decided it would make more sense to buy the scale and take it home, to avoid the shame of sneaking into the shop.  I hid it and I never told anyone I had the contraband item.

Big mistake.

It was the first time I’d owned a scale since I developed anorexia.  Within a few months of owning it I was suicidal.   The thing about OCD, is if you give in to it even one little bit, it will take you for a ride, a hellish ride.  First I started weighing myself once a day, first thing in the morning.   Then, gradually I started weighing myself at night too.   And before I knew it I was weighing myself 8-10 times a day.  It was out of control.  And it got out of control in a matter of a few weeks.  I was controlled by that scale.   This was at the same time when I was receiving ECT treatments, I wasn’t eating very much because I felt quite ill.  My weight dropped and because I had a scale, I obsessed about it.   Then when the ECT was finished and I began eating more normally again, I began to PANIC about the weight gain.

Normal, intellectual, reasonable thought of someone without an eating disorder:  “I was sick, I lost weight and it was unhealthy, it’s normal and healthy that I’m gaining it back

Anorexia: “You are weak, you are “fat”, you are out of control, you are ugly, you need to stay at this number on the scale or something bad will happen

In the end, the suicidal thoughts became so overwhelming that I decided to get out.

I took a hammer, I went into the garage when nobody was home, and I smashed the hell out of that scale.  I smashed it until it was in pieces.  It was surprisingly sturdy and difficult to break.  I was sore and sweating from exertion by the time it was destroyed.   And I felt empowered.

Five  years later and I’ve never owned a scale again.   Sometimes in weaker moments I will weigh myself on a scale at a friend’s house, or in a store.  But I know that this practice is self destructive and only gives Ana ammunition to destroy me and shame me.

Scales are for fish.

I will continue to admire the folks around me who embrace their bodies of all shapes and sizes.  I will continue to be mystified and curious about the concept of body positivity.  I will continue to strive towards true recovery from anorexia.

True recovery goes so much further beyond weight restoration.   True recovery means that the scale is powerless over me.  True recovery means I can be comfortable in my clothes.  True recovery means that food is nourishment and enjoyment and doesn’t have  moral value.  That my weight does not mean anything about my self worth.  True recovery is freedom from shame and self hatred.

I may “look good” but don’t be fooled, Ana still runs my life.

 

 

Depression meets PTSD. Crash.

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I’ve realized over the past three years that depression is often more of a secondary problem for me.  It’s very situational and very linked to PTSD.  By the time depression flares up, it generally means that I’ve been coping with PTSD triggers for too long and I’ve started to crash into exhaustion.  Depression sometimes means feeling literally nothing, while PTSD can mean feeling everything and things that are from the past vaulted into the present, clear as day.   This can be a confusing progression.

Lately it’s hard to tease out whether I have a whole host of mental health diagnosis or just one (PTSD) causing a host of symptoms.

Abuse triggers can lead to negative feelings about my body which can then trigger my good friend Ana…yes, PTSD comes first and anorexia is a symptom.   For me anorexia is mainly a series of obsessive compulsive thoughts and behaviours which are linked to extreme anxiety around changing my food rituals.   So anorexia comes first, and OCD traits follow.

When I have a lot of PTSD symptoms and flashbacks, I start to have trouble sleeping and I have vivid nightmares.  Sometimes I wake in the middle of the night to a full panic attack.  Flashbacks can lead to panic attacks during the day as well, and also to anxiety in crowds and enclosed spaces.  So PTSD comes first, and anxiety and panic symptoms follow.

At the end of the line comes depression.  DEPRESSION.  It feels so heavy.  Depression to me leads from coping to constant suicidal and self harm ideation in what seems like mere seconds.  For me, suicidal thoughts are often the first real indicator that I’ve slipped into depression again.  This may seem backwards, but for me the most severe symptom tends to come right at the start, even if I’m depressed for only a few days.

When I’m depressed I feel like I’m walking through a thick soup of fog.  Every fibre of my being hurts and feels heavy and leaden.  Sometimes I have to lie down after just showering and getting dressed in the morning because I feel too exhausted to continue with the day.  When I’m depressed I have no energy.  I want to crawl into bed and hide.  Unfortunately, I’m a single parent and I have a full time job.   It’s not an option just to crash.

So I keep going, but the time crawls by.  I feel unsure if I can get through the day.  I feel unsure if I can stay safe, and resist the negative thoughts.  My self esteem crashes.  I start to feel a lot of feelings from the past.  Or maybe that is backwards, maybe I feel the feelings from the past and it triggers depression.

When I feel out of control of important aspects of my life, I am triggered and I think about suicide.  This is the way my life is.  It’s been this way since I was 17 years old.   It’s both normal to me, and completely terrifying every time it happens.

The depression always lifts and these days it lifts more quickly than it ever did in the past.  The lights come on again, I see the world clearly and not through a haze.  I feel connected and I feel like I am competent at some things.  When I’m depressed I feel alone and I feel utterly worthless.  I feel like a burden and a problem and someone that people I know put up with, rather than care about.  I have trouble making small talk.  I spend a lot of time silent.  I feel an immense amount of social anxiety and discomfort in social situations, especially those involving food.  Depression, anxiety, anorexia, PTSD….it’s a perfect storm of misery.  I’m caught in the middle of a storm of symptoms and I don’t know when they will abate.

Right now I’m triggered because I’m worried about my children.  I’m triggered because of the way my ex-husband treats my children and me.  I’m triggered because this is the time of year, 3 years ago, leading up to my physical separation from him, when things were at their most tense and scary.

I’m triggered today because my daughter told me that her father’s avatar/icon for me on his phone is a piece of raw meat.  Raw chicken.   The father of my two children sees me as nothing more than a piece of meat.

Fuck.