Anorexia from the outside in

Despite the fact that I've been blogging less (okay, a LOT less), I still think about eating disorders. Not just in terms of my own recovery, but also in more philosophical and general neuropsychological terms. I was listening to an audiobook by VS Ramachandran the other day, and he was talking about theory of mind. This got me thinking about how people without EDs (and even people with EDs) try to understand another person's disorder.

Theory of mind is the technical neurological term for trying to figure out what someone else is thinking. Quoth Wikipedia:

Theory of mind is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own.

If you see someone reaching for a glass of water, you assume that they're thirsty. After all, that's generally why you reach for a glass of water: you're thirsty. Water is something to drink. Ta-da! You don't have to be thirsty to understand that someone else might be.

Crucial to understanding someone else's motivations is understanding our own. We know what thirst is, we know that water makes thirst go away, we know we have to bring the glass of water to our lips and swallow.

So what does this all have to do with anorexia? Most of the research related to eating disorders and theory of mind has been with regards to any potential deficits in this area in sufferers. One 2004 study didn't find any problems with theory of mind in a group of 20 anorexia patients; a separate 2010 study found that AN women did have difficulty identifying others' emotions, which is one aspect of theory of mind. Bulimia patients were more attuned to others' negative emotions, according to research published earlier this year.

All of this is good to know, but it still doesn't tell us how other people understand what it's like to actually have an eating disorder. I don't know whether or not this research has been done, or even how you would go about measuring it if you did. But crucial to understanding anyone's experiences of anything is theory of mind.

Imagine this: someone at work has stopped bringing their usual PB&J sandwich to work and has started bringing salads. They talk of wanting to lose weight. To the average person, it looks like your co-worker is on a diet. Like so many others, your co-worker wants to be thin. Unlike most people, however, this "diet" doesn't stop after just a few pounds. Your co-worker still talks of wanting to lose weight, no matter that they don't have any weight left to lose. Then you learn that it's anorexia.

The only way a non-ED person has of understanding anorexia is from their own experiences. Most people have been on a diet. They've grabbed flesh in the mirror and strained their necks to see if these jeans do, in fact, make their butt look fat. Anorexia looks a bit more extreme, but most people have never found a plate of spaghetti more horrifying than a plate of snakes. This diet mentality is all people know, the only frame of reference.

It's dangerous on several levels: 1) people think they know what it's like to have an ED because they juice fasted for a few days and 2) EDs seem to be about wanting to be thin. Of course, many ED behaviors are the dogged pursuit of weight loss, but weight loss isn't really the motivating factor. It's a fear of fatness, a fear of losing control, an ineffable fear that defies being put into words.

This is also, to some extent, how people with eating disorders try to explain the craziness in their minds to other people. Dieting is readily available, easily understandable cultural currency. Any woman I ran into could understand exactly what I meant when I mentioned my worries about what I was eating. We were motivated by different things, but it made sense for me to be worried about my eating and exercise habits. Everyone else was. I couldn't describe what the rest of my anxiety was about, and food seemed like as good of a scapegoat as any.

Chime in: What do YOU think? Have people had difficulties understanding your ED? Has anything helped others gain a better idea of what it was like?

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Kristina said...

Yes. And I think this even confuses the sufferer when trying to understand their own illness and puts a block on recovering.

hm said...

Yes- agreed on all of this- The people who love you can go into instant "denial" due to over-identification with your struggles which leads to minimization of your disorder.

Ex: "I'm scared of getting fat." "Oh, that's ok, honey; we all are." The ed sufferer somehow feels both justified (I'm not sick, everyone feels like this) AND misunderstood (no, really, I'm TERRIFIED- OF EVERYTHING- you don't understand!) at the same time and shuts down. Communication for someone with an ed is incredibly difficult, and as you said in the post, ends up getting wrapped up in the readily available common societal terms that abound in the dieting world.

I know that I struggle intensely with fears of appearing selfish or like I want attention- so if someone over-identifies with me and poo-poos the intensity of my struggle, I will immediately stop talking for fear that I might look like the annoying "one-upper."

What I am not certain about is peoples' intentions towards me when they do this- Are they trying to say I don't struggle any more than they do as your average American dieter? Are they annoyed and think I am exaggerating? Or are they trying to reassure me somehow? Maybe trying to make me feel like they see me as "normal" or "acceptable"?

I really have no clue. What I do know is that the QUICKEST way to get me to shut the ***** up and dive straight into the comforting arms of my ed is to say something like, "We all struggle with that [insert casual wave of hand]." or "Just stop thinking about it so much! I just try to enjoy each day as it comes [insert condescending smile]." or "Yeah, I feel like I ought to exercise more too. I'm so lazy [insert rueful chuckle and roll of eyes]!"

hm said...

Oh... and as to what helped others understand...

I'd say Point #1 is this: PICK YOUR AUDIENCE.

Pick well. Pick ONLY those people who you really, REALLY trust. Whittle your potential listener base down to a very small number, to limit misunderstandings, hurts, and frustrations, as you try to recover.

Point #2: Be brave. Speak up. Say, "This is how I felt when you said that." and "Here's how I need you to respond instead." Even if it makes you feel selfish to say that. Even if it makes you cry. Even if you are scared. Once you've picked your audience carefully, TRUST that your chosen few will hear you when you tell them that the way they are communicating with you is dragging you down.

Point #3: Don't give up on communicating. You've picked your audience. We ed sufferers are naturally predisposed to assume the people around us think the worst of us, for some reason. Fight the urge to shut down when you feel certain that, because of what some of your listeners have said, they all think you're ridiculous, selfish, or bad. Keep talking anyway. You're probably wrong- they probably just miscommunicated and didn't know that it would trigger you. If they love you, they won't be sitting around judging you. You have to keep trying to talk, just like you have to keep trying to eat. It's all part of learning how to give yourself what you need!

Carrie Arnold said...

hm- great points.

Kristina- YES about the treatment bit. I think thinking of an eating disorder as a diet gone bad causes a lot of red herrings in treatment as well.

Anonymous said...

I find that it helps people understand my son's sufferings from anorexia when I use obsessive compulsive disorder as the in-common basis (instead of eating/dieting). Everyone *thinks* they understand OCD as well, so it's a good place to start. I'll say something like, "You know how someone who has obsessive compulsive disorder might wash their hands over and over again? Well it's like that for my son, but instead of having an obsession focused on cleanliness, his obsession is with food." Some how this comparison communicates the mental-illness component more accurately than talking about just anorexia because of all the preconceived notions.

(Nourishing My Son)

L.C said...

I don't know how to get my husband to understand my eating disorder. He just wants it to go away and life be normal again. I don't know what to tell him or how to help him understand.


Kelly said...

I really appreciated this post

Unknown said...

Very much so. In fact, after explaining my ED to two of my closest friends, and experiencing their "stereotypical" reaction, I refrained from sharing my struggles with others outside of my treatment team. It actually made things harder, not better, to include more people in my circle of trust.

Eventually I found some helpful articles to email to my two friends, and while one of them still doesn't believe me, the other one came around and has been pretty supportive. It is hard enough trying to recover from an ED, much less trying to cope with people who don't believe you.

The bit about noticing a colleague start to switch their eating habits really stuck a chord with me. I think that I've become much more sensitive to the languaging and eating habits of those around me because of my ED. I am much more careful with my words because of my ED, too.

Great post!

Angharad said...

I think your post is fantastic!

Despite having lived, consciously, with anorexia for more than 7 years, I myself still find it difficult to understand, so what hope do others have of being able to understand and thus help?

I have found that even those in the profession of helping eating disorder sufferers do not fully understand this complex illness, and, on more than one occasion, I have felt upset and confused and frustrated about what a professional has said to me.

In my life, I would say that there are only two people who actively try to understand and help me through this illness. One is a professional and one is a close friend. However, I do not see these two people very often at all, so the rest of the time is a great struggle. My mother ignores my ED, which is both helpful and unhelpful. My father just thinks I am crazy and doesn't believe I am ill. We are no longer in contact. Having no-one to listen and no-one trying to understand makes those suffering from EDs feel even more isolated, alone, abnormal, lost and crazy.

This is why I turned to blogging. I totally agree with 'hm' above where they say not to give up on communicating. Communicating is something which ED sufferers will find very difficult, but, we need to try, otherwise we will stay suffering forever. By blogging, I find that I can write about how I feel, without the fear of being judged, and with the knowledge that I am possibly helping others suffering. If we, as sufferers, are honest (which may be difficult what with it being such a secretive illness), we can increase other people's understanding so that they are more aware and can help others from becoming trapped in this hellish illness.

Julie O'Toole MD, MPH said...

This is an interesting thread of conversation Carrie. The advantage to characterizing anorexia nervosa as a mental illness or (gasp!) brain disorder, is that people can quit equating it with the common dieting experience. The disadvantage, of course, is the negative implications these terms have for many people. But it beats the trivializing you (and others) describe so well.

The first descriptions of anorexia nervosa by Richard Morton in the late 1600's did not even mention fear of fat.

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Unknown said...

It is so nice of you to admit that the eating disorder still pops into your mind from time to time. Ask long as you can fight it your good but if not then you might want to check eating disorder treatment centers. This will help you a lot.

Anonymous said...

I don't think that I began to truly understand my daughter's ED until she and I ate a good meal together at a restaurant in her college town recently. She ate pretty well, but then got restless. We spent maybe an hour walking around campus. I saw desperation, fear and despair in her eyes. She kept repeating the same things over and over again: "I love food"; "I was chubby", etc. Obviously, it pained me a lot -- but it's better to know.

Everyone else thinks that she's recovered, doing well, and weight-restored. It's hard to know what do do because she is of legal age. And, when someone is what is considered a normal weight, smart, and articulate, no one listens to the mom. They don't see the subtle executive functioning and personality changes -- the loss of her sense of humor; the rigid thinking when she used to be flexible and empathetic.
The immediate assumption is that everything's fine, and the mom is just being overprotective. And "overprotective" is a damning word in our culture.

Anonymous said...

My fiancé has tried so hard to understand my ED and hasn't. I tell him that he is not supposed to. He needs to just hold me accountable and be with me every step of the way in recovery.

I really liked this post. I just started my blog on my recovery and I could have your input it would be greatly appreciated. I started following your blog =)

Thanks for taking a leap of courage and taking the road for recovery. Its an inspiration to us all.


Anonymous said...

To the audience i've chosen to articulate with, i actually compare the ED to schizophrenia and if they're willing to listen i'll share some about dopamine, pleasure, obsessionality, etc. Though not hallucinatory the voice of the ED battles *me* constantly. Externalizing it has helped me to feel like i'm not just battling myself and has given my team something more to pay attention to than just what they can see. Because i'm an older sufferer with AN, i've gotten really good at plastering on a happy face, but with these people i can tell them what's happening, even if i can't perhaps express it because i'm in public or just don't want to fall into tears or pacing or finding something to clean or screaming my head off-you get the picture.

It is VERY hard to be this vulnerable but as hm says be discerning and keep talking. i know these people love me, even if they don't always 'get it'. The ones i know won't or don't, i just don't spend much time on anymore because my focus has to stay on recovery and because some of these people are family it's easy for me to have buttons pushed even though it's not to do with them at all. My recovery doesn't need that stuff.

The people who really want to understand will make an effort that you can see. It may not be precisely what you need all the time but it will be visible.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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