How Do I Talk to a Friend or Family Member With An Eating Disorder? (Or You Suspect They Do)

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This is 2017’s National Eating Disorders Awareness Week, and I’m excited to be writing a few posts based on requests.

My first post is how to talk to a friend or family member with an eating disorder or who might have one… from my perspective as someone in recovery. While I was struggling through the years, I heard from friends and family that they felt powerless. It was like watching a sinking ship and not knowing if they could do anything to stop its demise.

While it is impossible to cure another person, friends and family members are NOT powerless. I think about the camp counselor who talked about her own eating disorder openly without shame while I was symptomatic but not yet diagnosed; the friend who reached out to the school administration when she was concerned about me; my mom who spent countless hours trying to understand why I wouldn’t eat. I might have resented them at the time, but now I know that they planted seeds that would bear to fruition later. I didn’t enter recovery in their timing, but it did happen.

I will forever have memories of friends, family members, professors, and co-workers expressing their concern to me over the years. If you think that your words don’t make a difference or impact to someone deep within an eating disorder, you’re wrong.

I will give a cautionary note, however. For every good friend who expressed concern and gave me unconditional love during my journey, there was another who met me with insensitivity and stigma.

Talking to someone with an eating disorder can be a tricky endeavor. On the one hand, you want to express love and concern, but you don’t want to do so in a way that is off putting or hurtful.

In this blog post I will be outlining some “do’s and don’t’s” derived from years of experience of what has and hasn’t helped me.

  1. Do ask about it…

… but try not to probe or make assumptions.

Bringing up your concerns with someone you believe to be struggling can be anxiety provoking. It is a whole lot easier to pretend everything is okay. However, if you have a sinking feeling that something is wrong, and you are close enough to the person to broach the subject, by all means consider it.

Before you do so, consider these two things:

a) Don’t push it– If you bring it up and are met with defensiveness, it might not be the right time to talk. People with eating disorders can be highly secretive. In my deepest stages of denial and shame, I avoided all conversations about how I was doing. I remember how one time prior to admission to residential treatment, a teacher asked if I had an eating disorder. Taken aback, I mumbled something about having a rare digestive disorder. I wasn’t ready to admit how out of control or scared I was. Eight years later, I still remember that conversation as formative. She did not push the issue but expressed concern, and that meant a lot. Even though I wasn’t in a place to talk about it at the time, I respected her for bringing up the subject.

b) Check your assumptions– In society, we tend to associate eating disorders with “thinness” (whatever that means), but that’s just not accurate. Most people with eating disorders are not underweight. Anorexia is the most rare eating disorder, and bulimia and binge eating disorder are more common. People with eating disorders often fluctuate between periods of restriction, bingeing, and purging. I know some of my most symptomatic, out of control times were when I looked healthy. Don’t automatically assume that someone’s thinness is anorexia. It might as easily be a thyroid issue, an autoimmune disease, drug abuse, or simply body type. Similarly, don’t assume that someone doesn’t have an eating disorder because they appear to be healthy.

I have a “spidey sense” in my judgments about whether someone has an eating disorder, but I can be wrong. I am also careful about bringing up the subject of a possible eating disorder. Far before I bring that topic up, I make sure to talk about my own experience, normalize the reality of eating disorders, and check the facts.

. . .

2. Do seek consultation…

… but avoid gossip.

I can’t tell you how horrible it feels to know that people have been talking about you in the whispers you slightly overhear as you pass by and in hushed conversations you know have happened. I think by all means people learn more about eating disorders if they suspect a problem in a family member or friend. Education is important. Talking to a dietitian, therapist, or an organization like the National Eating Disorders Association can be a great move. HOWEVER, when that trickles into gossip and shaming, it stops being helpful.

Sometimes a family or friend group might need to get together to discuss how best to broach the subject with a loved one, but as soon as it turns into judgment and teasing, it can become toxic.

A note about consultation: It is strangely easy to read an article from BuzzFeed or some other reputable source (joke, but in full disclosure, I love BuzzFeed) and think you’re Dr. Phil or something. “Is it about control?” I’ve had people ask me in condescending tones. As if that comment is unique and your therapist hasn’t talked about control 900 times. Eating disorders *can* have an element of control, but it is ALWAYS much more complex. Eating disorders are associated with a cluster of things that may or may not be related: psychological factors, personality types, presence of past trauma, significant stressors, biological predisposition, family history, etc. A cursory look at a non-scientific article or watching a horrible Lifetime movie about anorexia cannot make anyone an expert.

. . .

3. Do express concern about eating habits…

… but don’t do so during meal time. 

Eating with someone you’re almost sure has an eating disorder is difficult and uncomfortable.

It is SO tempting to reach across the table and critique a meal choice, or say something like, “Is that all you’re having?”, or, “Why aren’t you eating more?” In my experience, those conversations are never helpful. The person with an eating disorder, who is likely anxious from the experience eating out, is on guard and gets defensive fast.

I get it– meal time seems like the most logical time to express concern. After all, it is commonly thought that meal time is in fact the problem. When I was deep into my eating disorder, going out to eat was SO MUCH more than an hour at a restaurant. It was the fasting before and after; it was the fear of eating in front of people; it was planning a binge later in the night so I didn’t have to eat in front of people; it was looking up the menu online beforehand; it was counting calories hours before I stepped foot in the restaurant.

It is better to bring up the specific behaviors later in the day when meal time is over. Stick to the specifics about behavior and don’t make it personal. An example: “I noticed when you were at dinner tonight, you ordered a low calorie entree, and you kept putting parts of the meal in the napkin on your lap.” –> I know, easier said than done!! I’ve been the recipient of a lot of insensitive mealtime comments, but I’ve also given some insensitive mealtime comments to friends I knew were struggling. I get it: Frustration can mount in the moment at mealtime, but try to hold off until later. You’ll end up having a much better conversation.

. . .

4. Do focus on food…

… but look at the greater picture, which has a whole lot more to do than just food.

Someone I knew in graduate school said something to the extent of, “I don’t know why families don’t lock the family member with an eating disorder up and force the person to eat.”

While that is absurd, I have heard so many comments that are similarly invalidating and off base:

“Just eat.”

“It’s not that hard.”

“Don’t make this such a big deal.”

That approach doesn’t work.

Eating disorders are both about food and not about food. Of course, eating disorders are highly related to weight and food habits (that’s why they’re called eating disorders) but in some respects have little to do with food.

Restriction was my teenage coping mechanism to deal with a lot of internal chaos– undiagnosed generalized anxiety, crippling OCD, existential anxiety, depression, and feelings of hopelessness, and worthlessness.

In my years of being symptomatic, I was way more likely to talk about those things than my eating habits. I hated when people would make it seem like gaining weight or eating would solve all of my problems. My eating disorder served multiple functions in my life, and until I dealt with those, I didn’t get truly better.

On the other hand, eating disorders are necessarily about eating.

If someone is underweight or malnourished, it is impossible to look adequately at the big picture. Medical, nutritional recovery is a precursor to psychological recovery.

Sometimes in more psychoanalytic approaches to recovery, it is conceptualized that when a person deals fully with the psychological parts of the eating disorder, the symptoms will dissipate. That also doesn’t work.

If you are bringing the subject up with someone, consider the rather paradoxical statement that eating disorders are about eating, but they don’t give us the full picture of what’s going on.

. . .

5. Do take action if necessary

… but think it through first.

Eating disorders are dangerous.

Period.

It is well-known that anorexia has one of the highest mortality rates of all mental health issues, but it is definitely possible to die of bulimia or binge eating disorder too.

The first thing I tell people who haven’t gotten into treatment is: SEE A DOCTOR.

Eating disorders can be associated with some serious medical complications that can kill including (not an exhaustive list): potassium/ electrolyte imbalance, low heart rate, low blood pressure, and general heart abnormalities (that’s why people with eating disorders must have regular EKG’s).

I will reiterate here that someone of average weight, overweight, or obese can die of an eating disorder as well. All of the above medical problems can happen to a person at 70 pounds or 370 pounds.

That is why if you truly suspect a loved one or friend has an eating disorder, don’t stay silent.

In all three of my three major anorexia tail spins, the initial descent into the illness and two subsequent relapses, I needed intensive medical intervention to get back to normal. Two of those times, it was not of my own choosing. Friends, family, and even my school had to intervene on my precarious downward spirals, and thank God they did. Otherwise I might not be here right now.

With that said, if you are seriously concerned about someone who is NOT getting treatment for an eating disorder, there might be cases in which you should advocate for medical consultation or even hospitalization.

For someone with a SEVERE and UNTREATED eating disorder, it could be that lovingly suggesting a trip to the doctor or ER for a medical evaluation is what is needed in the moment. Or, perhaps looking up residential treatment options and calling the person’s insurance company for help.

** Now: Before you attempt this kind of conversation with someone, heed caution! Most people who are diagnosed with an eating disorder have a treatment team or are getting support of some kind. If that is the case, step back and offer support in other ways. Suggesting hospitalization or a doctor consultation additionally has a high likelihood of pissing off the person’s eating disorder, so be prepared that you will likely be met with resistance.

There are some cases when this kind of conversation happens more organically: For example, if a friend passes out or complains of heart palpitations.

. . .

I think the reason many people don’t express concern to a friend or family member about what they’re seeing is out of fear. I get it– it’s scary. People don’t inherently know how to bring it up or what to say.

You are brave and caring to consider having a conversation that might save a life. Sometimes simple comments can go a long way, things like:

“I love you, and I’m concerned about you.”

“It seems like you’ve been struggling lately, and I want to help.”

“If you ever want to talk more about what’s  been going on for you, I’m here for you.”

For more information or to take a free screening, check out NEDA’s website.

In keeping with the National Eating Disorders Awareness Week slogan for this year, I’ll finish with this: “It’s time to talk about it.”

The 44-Pound Woman Story

FYI I will NOT be posting any thinspo images in this article, this is Rachael in a healthier place (my assumption)

It’s all over the media. It is trending on Facebook, Twitter, Instagram, and Go Fund Me: Rachael Farrokh, only 37 years old, made a social media plea to help her get treatment for anorexia, and her video went viral.

The media followed soon after, printing article after article with names like, 44 Pound Woman Dying of Anorexia Seeks Desperate Help. The world responded to this viral video and the subsequent news coverage, and Rachael’s Go Fund Me page raised over $120,000.

I am glad that  as a result of this, she is going to get help at Denver ACUTE, an eating disorder treatment center in Denver that helps with medical stabilization. I believe that Rachael Farrokh deserves and does desperately need treatment.

As an honest caveat to what will follow, I do not know extensive details on this story, so I cannot say I know much about this woman’s case. I have not watched her Youtube video plea, nor will I. I will not look at the ultra-thin pictures that pop up on my Facebook.

However, I will say this: the media coverage on this story has highly disturbed me.

In my opinion, the media coverage of Rachael Farrokh’s struggle for treatment does a disservice to all of us in:

1. Inaccurately portraying the reality of most eating disorders

2. Perpetuating the glamorization of anorexia and the exploitation of extremely sick individuals

3. Failing to address the systemic issues at play

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1. I want to take a step back.

Around 20 million women and 10 million men will struggle with an eating disorder in their lives. Currently, there are four major types of eating disorders (per the DSM-V): anorexia, bulimia, binge eating disorder, and otherwise specified feeding or eating disorder (OSFED).

One of the changes to anorexia in the new DSM is the removal of the criteria that people with the disorder must be 15% under their ideal body weight, because that is sometimes not the case. In fact, people with restrictive eating patterns or anorexia can appear of “normal” weights to others. 

Further, the most common eating disorder is NOT anorexia, it is binge eating disorder. Around 1-5% of people have this disorder, and it is associated with recurrent episodes of binge eating. Most people with this disorder, as well as bulimia, are of normal weight.

The point I’m making is this: people with life-threatening, treatment-meriting eating disorders do NOT necessarily have to be underweight to warrant immediate treatment.

You do not have to be 44 pounds to have an eating disorder… or 54, or 104, or 154, or 204.

Eating disorders are life-threatening and should be treated seriously at their earliest signs and symptoms. Purging can be life-threatening at ANY weight. Binge eating disorder and restrictive eating can be life threatening-too. People with eating disorders are usually required to get medical supervision because electrolyte levels, potassium, hormones, etc. must be monitored, thus reaffirming the point that regardless of the diagnosis eating disorders are serious.

This woman is not the norm of people with an eating disorder. Some or most of the time, eating disorders are not visible to the outside eye. At my “sickest” (binging, overexercising, restricting, whatever) people have been completely unable to tell that I was close to breaking down.

I worry about this media coverage. I know the way my brain used to think. I wanted to lose x pounds or get to x weight to feel like I was “worthy” of treatment. For people with eating disorders, this viral story can be triggering and harmful.

2. In a Communication class, I learned this point: “The media is the message.” I want to look at the message that comes through the articles.

In the news articles I saw, I viewed many pictures of Rachael looking severely emaciated and vulnerable, and media articles used words like “desperate” and “shockingly thin.” I’m glad that donations poured in, but why did this story become so popular in the first place?

The media has a strange, glamor-tinted fascination with anorexia. The more severe the story, the more people are interested. In a country full of “obesity epidemic” lingo and sayings like, “You can never be too rich or too thin,” culture is fascinated with people who maybe “went too far” by developing severe anorexia. They receive our sympathy points, and we read the articles. Oh yes, we read those articles about Rachael Farrokh. We saw the pictures, the many pictures.

The pictures that accompanied many of these articles (and the Youtube clip) are nothing short of what Kelsey Osgood coined, eating disorder porn. These images aren’t healthy to anyone. They are triggering to ED sufferers, exploitative of a woman who is clearly dying or is at extreme medical risk, and they falsely portrays what an eating disorder is like in most cases.

Rachael Farrokh is sick. Her body and mind are deprived of nourishment they need to survive. And in the midst of that the media is fascinated with how she looks, and these constant pictures seem exploitative, as if she is being show off in some theater of the grotesque and public pity.

Anorexia and other eating disorders are not sexy or glamorous, as media messages might indicate.

They are severe psychosocial disorders, and those suffering from them need treatment, rather than being exploited by their pictures being blown up on the internet.

3. Even as I write this, I think that deep down, this whole story is a farce to the real story. The real story is this: Stories like this should not be happening in the first place.

Why can’t all people with eating disorders receive affordable eating disorder treatment?

Why does there need to be a Go Fund Me page not only for Rachael but for anyone with an eating disorder?

Well, that’s an easy answer: because the American health care system is not conducive to helping people get eating disorder treatment. 

ED sufferers have a high mortality and relapse rate, and insurance companies (in my experience historically) do not like to cover full, comprehensive treatment for treating the disorder.

A few years ago, I was at a point in my life in which I was looking at doing IOP (intensive outpatient) treatment. My insurance company denied my claim for services, even though I was out of control and in desperate need for help. I flat-out asked this question: “If I weighed 5 pounds less, would you authorize me to go to treatment?” Whoever I was talking to at the ever wonderful Blue Cross didn’t directly answer that question but did say this, “You might have a better case.”

You might have a better case.

As if I have to plead the right to receive eating disorder services, that my insurance company is all but telling me: Lose 5 pounds and you can get the help that you need.

How fucked up is that.

As I’ve said in this blog post several times, eating disorders are severe, and weight is often not a good indicator of how much someone needs or “deserves” treatment.

Everyone deserves treatment. NO ONE deserves to go through the living hell of an eating disorder. While we heard about Rachael’s extreme story in the news, there are countless people who are unable to afford treatment and are dying as a result.

The American health care system needs to understand ALL eating disorders for what they are and be able to offer treatment for those who need it.

***

In sum, the media has done a disservice to others with eating disorders. The articles full of glamour-tinted images of someone dying of anorexia do not accurately describe the experience of most people with eating disorders. In addition, no articles I’ve read mention the systemic injustices having to do with lack of insurance coverage for eating disorder treatment.

I have nothing against Rachael Farrokh. I hope she recovers fully and goes on to live a full, meaningful life. But the media, society, and we as individuals need to think critically about this story and how we understand anorexia and eating disorders in general.

Bikini Season, Body Shaming, and Other Stupidities

Bikini season is coming!

We know what that means… Lots of bikini/ fitness/ diet Pinterest boards leaving people feeling horrible about themselves. Article titles like, “How to get ‘bikini ready”. Or, articles about kale smoothies and how good they taste and while you’re at it,you should exercise like 18,000 calories a day. Pictures of “best/ worst” celeb bikini bodies. It’s already begun with “shocking” pictures of Tara Reid in a bikini and talk show hosts telling Kelly Clarkson she “could stay off the deep dish pizza” after she… gained weight (WHAT!!!!) after having a baby (um, you’re supposed to lose that weight in 2 weeks, maybe less, everyone knows that *heavy sarcasm*).

I don’t know what is more sad: 1) That a bunch of tabloid dipshits judge and mock people’s bodies, how much they eat, and their weight struggles/ triumphs/ how they’re “letting themselves go,” or 2) That somehow these magazines are selling! People are reading articles by said dipshits.

I just have to ask: What is this world?

What kind of weird society do we live in that deems terms like “fat,” “dessert,” “seconds,” and “full” shameful? What is so disgusting about women’s bodies? Side note: my focus for this post will be about body shaming women because I am one and have more to say on the topic, but men are also victims of body shaming.

All of the mean twitter posts… the cyber bullying… the incessant fat shaming… WHY? The stigmatizing body shaming comments casually zinged about, they hurt. We may not acknowledge that body shaming comments hurt inside, but they do.

Body shaming hurts.

There is endless interpersonal and internalized shame about what we look like– that number on the scale what we eat what we don’t.

Culture tells us appearance defines our worth.

People are ashamed of their own bodies, and then collectively, we shame the body of others. With all this body shaming going around, it is no wonder that the diet industry is so prominent. And here’s where things get more disturbing. In 2014, the U.S. diet industry raked in $60.5 billion. More disturbing yet: that astronomical number is a DECLINE from the year before.

This video is a good visual of how much $1 billion really is. So take that video’s visual and try to wrap your mind around $60.5 billion. This is, by any standard, a lot of money. How many social ills that much money could solve in the world? Water sanitation, poverty, racial, sexual, policy to promote gender equality, and so much more! Maybe we could even put a dent in the United States’ massive debt.

Let’s just sit here for a moment and realize how fucked up this all us.

People are spending more money than the GDP of many countries on diets that become popular and unpopular as fast as hashtags or the latest in social media… Atkins is old school (the N’Sync of diets), but kale is in (the Taylor Swift of food). People are going Paleo, organic, and gluten free. Egg white omelettes are the new black. Diet pills remain comparable to the quirky and questionable relative at many family gatherings. Constantly changing options for people who are essentially wasting their money considering that DIETS DON’T WORK!!

Body insecurity is a given in today’s culture. Between 40 and 60% of young girls ages 6-12 are already expressing concern about their weight or are worried about being fat. The body-shame cycle starts so young. The same girls memorizing Let It Go and wearing Elsa costumes around the house might be considering going on their first diet. Maybe they already have.

In our culture, we are not at peace with our bodies, and how can we be with all this propaganda and equating body size and looks to worthiness? We think, maybe that next fad diet will make us enough. Maybe, then, we can feel okay and good about ourselves. Maybe, then, we’ll be worthy.

I follow an Instagram page called “Bye Felipe” which was created to call “out dudes who turn hostile when rejected or ignored.” The site usually focuses on people who are interacting on dating web sites. You can see for yourself the number of fat-shaming comments doled out to girls on this page. It is horrifying to open up my Instagram and seeing how guys degrade women by playing on body insecurities and playing the “fat” card.

These comments hurt, and they are dangerous.

So here is my message, and I wish I could put this in size 200 font:

LET’S PUT DOWN THE SWORDS.

Let’s stop shaming ourselves and others about the way they look.

Let’s treat our bodies with acceptance and compassion.

Let’s humanize each other’s bodies. Let’s humanize our own bodies.

Do we have body flaws and faults? Do some people need to gain or lose weight? A resounding yes. But can that be okay? Are we still worthy? An equal and resounding yes. It is possible to take care of our body struggles with a posture of love and self-care.

When people talk about how so-and-so is too thin/ skinny/ fat; what’s with her butt/ boobs/ nose/ ears/ mouth/ teeth/ hair, they don’t know who they’re affecting. Little girls (AND little boys) see the disgusting way people are body-shamed, and we’re breeding new generations of body-shamers.

An app exists in which you can “fit the fat girl crown”, and there was an app (thankfully it was TAKEN DOWN) that was designed to “rescue the anorexic girl.” All this when some reports suggest that incidences of eating disorders may be on the rise.

Disgusting, disgusting, disgusting.

You don’t know what the person across the street or next to you or in the cubicle over from you is dealing with, body-wise or life-wise. Be kind, for everyone you meet is fighting a hard battle. Often you know nothing about it, and it is better to be KIND and COMPASSIONATE, rather than shaming and potentially triggering. This spring marks the 14th year of my eating disorder, and frankly, I think people have to mind their own fucking business. I realize this does not sound kind, but one negative comment can set off a slip or relapse or a passive-aggressive text to my therapist about how much I hate her guts. NO ONE wants to hear a passive aggressive, “Do you really need that slice of cake?”, or, “Wow you look huge in that picture!” And especially not someone who has struggled with an eating disorder.

PUT DOWN THE SWORD.

So in conjunction with this blog post’s title, I’m going to tell you a secret about bikini season. Here is how to have a bikini body:

People are at war with their own bodies and the bodies of others. It is a war that no one will win, but there will be many casualties.

So, in sum: be kind, compassionate, and please:

Eating Disorders Kill, But Relationships Heal

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Fall 2009

Charlotte: Five years ago, the story was much different. Numbness and deprivation had drained my body of life, and vacancy replaced life in my eyes. Every night, I would pray that my heart would keep beating another night. I was spiraling into darkness, snowballing so fast that I wondered when and where I would crash. I eventually did crash, and landed on a ranch in Arizona, of all places. I had no hope but also nothing to lose by giving hope a try at residential treatment.

Janine: For over twenty years, anorexia had been the albatross around my neck. I had attended a long list of hospitals and treatment programs that seemed like one failure after another. As a last chance to evade death, I exchanged the towering evergreens of the Canadian west coast for the Arizona desert. My thoughts were jumbled in a fog of starvation and self-hatred. Anorexia had promised me everything, yet it had left me barely existing.

***

It sounds like the beginning of a bad, if not odd, joke. So this Canadian and Michigander walk into a ranch in Arizona… We, the writers, Janine and Charlotte, would never have met outside the confounds of one specific time and place: residential treatment for our eating disorders in 2009-2010. While our backgrounds were very different, in nationality, interests, and phases of life, we did share the same desperation for something better than living in the torture of anorexia. So we, along with others in our program, embarked on a journey that involved nourishing ourselves spiritually, emotionally, and physically. We cried with one another but also laughed and read books for pleasure. We ate pie on Thanksgiving and talked about identity and God. It wasn’t easy, or remotely close to easy even, but we healed together. We could see the tangible changes in ourselves. We could feel that we were no longer lifeless bodies anymore. Leaving treatment, we had hope again.

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Christmas at treatment 2009

Five Years Later:

Janine and Charlotte remain best friends. In many ways, our lives are so different now, now that we are less marred by our eating disorder scars. We are no longer treatment friends: we are just friends. We enjoy having adventures together. We have gone ziplining in Whistler, British Columbia (much to Charlotte’s terror/ chagrin) and to Disneyland (twice). While 1000+ miles separate us right now, we are intentional in maintaining our relationship through the wonderful development of Skype. Our eating disorders left us hopeless and incapacitated, but slowly, sometimes at a snail-pace, we have found freedom. In our respective ways, we want to help others out of their struggles within our spheres of influence. We would never have chosen to meet how we did or have anyone suffer in the ways we have, but we would never have changed the fact that out of the living hell of an eating disorder, an amazing friendship blossomed.

janine and i recovery

Charlotte: Treatment was a beginning of a new life chapter for me; not one filled with rainbows, unicorns, popsicles, and the end of all struggling forevermore, but one filled with real emotions, thawing, pain, and joy. In treatment, I felt unconditionally accepted and loved during one of the worst points of my life. I never believed that anyone could love all of me, even the ugliest parts. The abundant love and grace I received helped me emerge out of deep shame so I could deal with the factors that had led to my eating disorder in the first place. In the last five years, I moved across the country and then back to the Midwest and somehow earned two master’s degrees in the meantime. Although I still struggle with eating disorder behaviors at times, I believe there will be a day when that won’t be the case. I am so blessed by loving friends (such as Janine!) and a therapist who deserves an honor. I couldn’t be on this journey without them. Relationships don’t inherently heal eating disorders, but support is an integral part of recovery. While I wouldn’t wish my wild, roller coaster journey onto anyone, it is my story, and I am thankful for the beautifully chaotic mess. It is my story to own and love.

Janine: I catch myself once in a while realizing how different my life is now. A moment during work when I can’t believe I’m back doing what I love. I’m able to bring energy and enthusiasm to my job working with children that I couldn’t possibly have done when my eating disorder ruled my mind. I don’t think twice about eating cupcakes with my little nieces or laughing with friends over dinner. I am no longer numb and terrified all the time. I’m able to feel the amazing and wonderful parts of life and no longer attempt to dissolve into oblivion when the guaranteed challenges arise. Recovery has not made life perfect for me, but I am able to make plans for my life that I never thought possible. Nothing about recovery has been easy but I know it has been made easier by my unexpected and unlikely friendships.

50 Shades of Disordered Eating

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Marya Hornbacher writes, “I look back on my life the way one watches a badly scripted action flick, sitting at the edge of the seat, bursting out, ‘No, no, don’t open that door! The bad guy is in there and he’ll grab you and put his hand over your mouth and tie you up and then you’ll miss the train and everything will fall apart!’ Except there is no bad guy in this tale. The person who jumped through the door and grabbed me and tied me up was, unfortunately, me. My double image, the evil skinny chick who hisses, Don’t eat, I’m not going to let you eat. I’ll let you go as soon as you’re thin, I swear I will. Everything will be okay when you’re thin. Liar.”

This week marks the National Eating Disorder Association’s annual awareness week, and the theme this year is, “I Had No Idea.” Fourteen years ago, I didn’t know anything about eating disorders. I was creating dances to Five for Fighting songs, eating Mackinac Island fudge (it’s a Michigan thing), and reeling from loneliness alone in my room.

I knew that I was miserable, that I needed middle school to end. I knew that there was a void that hours of studying a day and my endless quest to be good enough would not fill. There was a hole in my heart, and I believed that if I could fend off my age-appropriate weight gain, maybe I would feel better inside.

What I did not know is that starting on a seemingly harmless diet would turn into a rabbit hole of misery that would continue into my late 20s. I did not know that my personality traits, perfectly suited to anorexia’s grip, genetics, and my social context would culminate into the perfect storm that would change me so much, so fast, that I barely would recognize myself.

I have a picture of myself on a Florida beach on my 13th birthday, my eyes squinting at the sun. I am rocking a one piece turquoise suit, and I look… happy. I wonder if I could talk to that 13 year old now, what I would say. I wish I could hold her hand and tell her that she doesn’t have to worry about overeating at the breakfast buffet the next day. And that middle school is horrible for a lot of people. Far too many raging hormones and mean girls.

Just 2 months later after I turned 13, I have another picture of myself in a state of complete starvation. I still thought I was “fine” at that point, but my eyes tell another story. They are vacant and lifeless. My life had changed drastically as well. My Saturday morning choreography sessions had shifted to compulsively reading cookbooks and taking naps from starvation fatigue that zapped away all my energy. I was drifting farther and farther from reality.

Over a decade has passed since my eating disorder’s initial onset. I have been through more than 50 phases of restricting, bingeing, and overexercising. Here is the difficult part– I am extremely hesitant to mention the specific behaviors that I’ve done and the abuse I’ve put my body through, because I don’t want to have anything be a “how to” or trigger.

I’ll let’s put it this way: my eating and exercise over the last decade and a half has been a play in the theater of the absurd. I’ve done figure 8’s with my cyclical behaviors and manipulated people and reeled in physical pain. There have been compulsivity, vegetables, and bizarre safety foods. Revelation of the remaining 47 shades can be left to one’s imagination, or preferably, dismissed entirely. The details are irrelevant, really.

The end result has been pain for me and others… financially, relationally, physically, spiritually.

I wouldn’t have put the last 14 years onto anyone, even my worst enemy.

Sadly, I did not receive adequate early intervention for my eating disorder. Instead of hearing about eating disorders in my health class, I learned about nutrition from my liposuction, weight-loss obsessed nutrition teacher. In gym class, instead of hearing a single thing about eating disorders, I was subjected to public weigh-in’s (can we just all agree that those are shaming?).

When my eating disorder was in its infancy, I saw a therapist who stared at me for the majority of our sessions… awkward for both of us, I’m sure, and definitely not therapeutic. I lied outright to my first (okay, first few) dietitians. My doctor told me I would be sick for the rest of my life.

That is why NEDAW’s 2015 theme of early intervention is near and dear to my heart (take a free screening for ED’s here).

I implore you: take this week to educate yourself about eating disorders. You never know who you know who will thank you for the information you have. And I’m not just talking about learning only about anorexia and bulimia… read about binge eating disorder as well! It was only just “officially” recognized in the DSM-V, but it still lacks recognition but is more prevalent than anorexia and bulimia, and it can be very dangerous.

The bottom line is this:

Eating disorders are not sexy, enviable escapades. My stomach hates me (despite my profuse apologies to it), I have paid hundreds of thousands of dollars just to be here and alive writing to you today, I am constantly at risk of relapse, and I can no longer remember a time when I was completely normal about food because I’ve lived longer with an eating disorder than without it.

Early intervention and education are so important. I wonder still if I were 13 right now reading these words, taking an online screening, and hearing about eating disorders in health class instead of liposuction… would things have been different? Would I have had fewer years of suffering?

I don’t know. But I will do anything I can to prevent others from going down that road.

Nobody wants 50 shades of disordered eating. I mean how much more horrible (and less sexy) of a movie would that be? I would not see that movie. I have lived that movie. And it sucks.

Myths About Eating Disorders: Debunked

Knowledge is power, but when it comes to eating disorders, there is a lot of misinformation that is out there. Sadly, this lack of knowledge of accurate information about eating disorders can even extend to health care professionals. With conflicting messages about what is true, it can be hard to sort out what information is accurate.

Because I have lived now over half of my life with an eating disorder, I’ve learned a lot of stuff (mostly out of necessity), and I have become aware of some eating disorder myths and stereotypes that exist. In this post, I am going to go over a few of these myths and debunk them.

 

What are eating disorders?

Myth:

Anorexia means starving yourself and being emaciated. Bulimia is bingeing and purging. And… that’s all.

Reality:

Eating disorders are most commonly described as complicated biopsychosocial mental health conditions that impact all bodily symptoms, the brain, and can have devastating consequences such as death. The most commonly recognized eating disorders are: anorexia, bulimia, binge eating disorder, and EDNOS/ OSFED (eating disorder not otherwise specified/ other specified feeding or eating disorder). Eating disorders involve some type of dysfunctional behavior(s) around food, including restricting food or caloric intake, fasting for long periods of time, using compensatory behaviors after eating such as purging, laxatives, diuretics, or overexercising, and/ or bingeing, or eating a large amount of food (of course there is social construction around what is considered “large”) in a discrete period of time.

Many eating disorder behaviors overlap. People who have suffered from an ED for a considerable length of time frequently experience diagnostic cross-over. Thus, these symptoms are neither clear-cut, nor are they necessarily noticeable. Eating disorder behaviors are often done in secret. Also, people with bulimia or binge eating disorder may not be over- or under- weight. Similarly, those who struggle with anorexia may not be emaciated.

It is important that people educate themselves about the impact of eating disorder behaviors and rely less on stereotypes of how eating disorders are culturally portrayed… namely how someone with an eating disorder “should” look or behave.

 

Who gets eating disorders?

Myth:

Privileged white adolescents.

Reality:

Anyone! While eating disorders are most represented in the media as occurring in Caucasian women of upper or upper middle class SES in a Western country, people of all races, sexual orientations, genders, economic statuses, and ages can develop eating disorders. There is a serious lack of representation of other eating disorder voices, which is why I’m really happy that this Marginalized Voices Project exists. We need to get better media representation of what eating disorders are like and who they affect.

Males, older women (40+), as well as people who are gay and of other racial groups, who have EDs are getting increased attention because—well, they get eating disorders too. Sadly, treatment is not necessarily tailored to them, and it needs to be.

 

What are the causes of eating disorders?

Myth:

Eating disorders are caused by Western media, trauma, families, or other environmental factors.

Reality:

Eating disorders cannot be pinpointed as being caused by one given factor. If you’ve ever taken a statistics class, maybe you’ll remember that correlation does not imply causation. Just because eating disorders exist (or are identified) in predominantly Western-influenced cultures, that doesn’t mean that culture CAUSES eating disorders.

Similarly, any risk and precipitating factors—a traumatic situation, an unhealthy family system—cannot be said to CAUSE an eating disorder. Perhaps these factors may increase the likelihood of an eating disorder developing, or they could be precipitating factors, but they are not the cause or fault of culture, or a family, or trauma.

I would also heed caution in that there has been an increase of media coming from companies such as Dove challenging cultural perceptions of body image. This is all good. I am a fan of challenging the oppressive body-image status quo. However, there is a difference between eating disorders and disordered eating or general body image issues. A girl might have negative feelings about her body from reading fitness magazines, but that is completely different from that girl developing a serious eating disorder.

Also, there is a significant biological basis of eating disorders that is still being explored. One study by Bulik and colleagues in 2006 suggests that anorexia is among one of the more heritable psychiatric disorders (0.56 as reported in her study).

All that to say, in general, there are a lot of unknowns when it comes to a cause or causes of eating disorders. My stats 101 lecture for the day: Be very, very careful about language pertaining to causation. Eating disorder research is being conducted because so little is understood still. There is not enough available knowledge to determine that something is a cause (or even causes) of an eating disorder. Talk about risk factors, talk about precipitating factors, talk about comorbid conditions, that’s fine. But talking about a cause suggests that 1+ factors completely explain the manifestation of someone’s eating disorder, and that is not something that can be said at this time.

 

What are the treatments for eating disorders?

Myths:

Once you have an eating disorder, you never get over it.

or 

You just need to eat.

Reality:

Eating disorders can be treatment resistant. I am living proof of that. However, treatment can also be effective. Recovery is possible. People don’t have to struggle with eating disorders forever and ever until they die. Recovery is not easy, and it may take time… a lot of time. Like years. Maybe more. But it can happen.

While eating disorders can be difficult to treat, certain treatments have been shown to be effective: CBT, DBT, family-based therapy, perhaps even acceptance and commitment therapy. I have more thoughts pertaining to this, but right now I will just say that there are some good options out there. I have been privileged to have seen a lot of great therapists who specialize in eating disorders, and I have been a part of treatment programs that have used all of the above treatment modalities.

People with eating disorders are not lost causes. They are not resistant, difficult, or frustrating. They are hurt and scared. They are in desperate need of empathy and understanding.

Notice that none of the treatment I have mentioned involves locking people up and force-feeding them. I had an acquaintance who once said, “If I got an eating disorder, my parents wouldn’t have put up with it. They would have just locked me in my room until I ate.” Honestly, good luck with that. Because I’m pretty sure that’s not addressing the problem. As in, I’m totally sure. That’s not going to work.

For whatever reason, people can have this mis-perception that the problem is the food, and all we need to do is make these people freaking eat. I both agree and disagree with that– it both is and isn’t about the food. I do not think that people can delve into root causes of their eating disorder while engaging in eating disorder behaviors, but I also don’t think that magically eating will fix everything.

So: there are some treatments that exist for eating disorders that work. Maybe the treatments that exist could be improved, but eating disorders are not untreatable.

 

 

8 Things You Shouldn’t Say to Someone With An Eating Disorder

In 13 years of having an eating disorder, I have heard it all– the good, the bad, and the ugly. I have heard some “jokes” about my weight or struggles that make me want to chuck a bottle of Ensure at them and then text my therapist with lines of angry emoticons.

Sarcasm aside, the ugly comments sting.

While people are often well-intentioned and lack adequate mental health education about eating disorders, an inappropriate comment can dig deep into the shame, anxiety, and terror that lurks underneath.

Speaking from personal experience of hearing all of these things (many friends have too), I am telling you: please, please, please don’t say these things to someone with an eating disorder. Please.

1. “You don’t look like you have an eating disorder.” Okay, there is not a “look” of someone with an eating disorder. Culture glamorizes the ultra thin ideal and focuses on (glamorizes? objectifies?) people who are extremely sick with anorexia. However, emaciation is not the eating disorder norm. In addition to the fact that problems with binge eating and bulimia are more common than anorexia, consider the huge diagnostic crossover between anorexia and bulimia/ binge eating disorder.

Regardless of the fact that this comment doesn’t make sense, when someone says a comment that taps into that stereotyped ideal of how someone with an eating disorder “should” look, my feelings of shame and panic about my body (which are already present) are intensified.  I already have to mourn the loss of my eating disorder identity on a daily basis, and I don’t need any more reminders about how I look.

2. “When are you due?” In general, people shouldn’t say this to a woman in general unless they’re sure. For someone with an eating disorder, they should be SURE. Not sure as in, “It might be a hamburger or it could be a baby.” If in doubt, don’t say anything. When people are in the stage of weight restoration, they often gain weight in their stomach, and it can stay there for a while. Chances are we are sensitive about this noticeable bloating, and a pregnancy oopsie comment is just the worst. Even if weight restoration isn’t a contributing factor to the bloating, it’s possible that we could (gasp) just have a stomach. I know, revolutionary. Side note: our culture’s weird obsession with spotting baby bumps ASAP is strange. Chillax, people. Pregnancy is a beautiful, wonderful thing, and if we’re pregnant you’ll find out when we’re good and ready.

3. “Wow, you must be hungry today!”/ “Aren’t you hungry?” Please do not comment about what I’m eating when I’m eating about what I’m eating. Whatever you say, chances are I’m going to feel disgusted and panic. Meal/ food comments can be appropriate, but if you must clarify or express concern, do so after a meal… significantly after. Eating can suck when you have an eating disorder anyway, and public shaming just exacerbates the general icky feelings.

4. “Have you lost/ gained weight?” If I’ve lost or gained weight, I will know about it. So will my dietitian and therapist. But do you know who doesn’t have to know? You! Why? Because it’s none of your business. For whatever reason, women just say, “You’ve lost weight,” as a compliment on par with “You just won a million dollars!” That’s just absurd in general. People need to find other ways of amusing themselves besides commenting on weight.

5. “I wish I could be anorexic.” And I wish I could be a unicorn. Just kidding, that would suck. And so does having anorexia. Don’t even go there with me.

6. “It’s just food (or insert specific food).” I know, it’s just food. It’s hard to understand if you haven’t walked a day in the shoes of someone with an ED. Speaking from experience, when I’m deep into my eating disorder, it feels like the world will end if I eat x, y, and z. Getting out of that mental block requires time and intensive treatment. Do you know what does NOT help with getting over that fear? People saying “It’s just food.” I know it is, okay, but my eating disorder can be strong and whisper that I cannot cannot cannot cannot have x, y, or z. Pointing out the obvious here is not helping me.

7. “Is it about control?” (pity glance) Please do not try to guess the reason for my eating disorder. Just because you learned on Dr. Phil that eating disorders are about control doesn’t mean that I want you to ask me, condescendingly, if my eating disorder is about control. I’ve been in therapy for a while. It’s not just about one thing. And to be honest, after some point, it stops being about one thing. My neurobiology has changed and I. cannot. stop. It’s not like I can realize I have control issues and throw pixie dust in the air and I’m better. It is WAY more complicated than that. Don’t mention control to me.

8. “You’re eating 3 meals a day right? So you’re fine.” Not fine. Not. Fine. Three meals includes so much variability. It is not about the number of meals, it is about the quality, quantity, and variety of food consumed. I learned in treatment that I should have at least 2 or 3 snacks in addition to 3 meals each day. So if I’m eating only 3 meals a day, it means I’m headed towards relapse. And you not taking me seriously is adding fuel to my ammunition.

 

Now a few caveats: these comments are not inherently bad, nor are the commenters inherently bad for saying things in innocence. An appropriately placed comment about a hypothesized pregnancy when you know the person has been trying to get pregnant is totally fine. Sometimes meal time comments are social conventions, and most people are fine receiving them. The issue here is saying such a comment when a person has an eating disorder. It has also been my experience that people are often oblivious when they have said something that I find hurtful or insensitive. A lot of times, an eating disorder can be a silent, invisible struggle, so people are not aware when they have been damaging.

You have to think how your comment will be interpreted in light of someone’s eating disorder. I cannot pretend my eating disorder thoughts are nonexistent. A comment about my size/ what I’m eating can send me into a destructive spiral. You don’t know the eating or weight struggles of the people with whom you interact. Think twice about saying something that can be taken the wrong way.

People don’t understand the effect stigmatizing or triggering words can have. Be kind and compassionate, and question your own stigmas about eating, weight, and eating disorders.