Things That An Eating Disorder Is Not

1.A fear of fatness
2. A diet
3. A choice
4. Stupid
5. Caused by Western media
6. Caused by beauty ideals
7. A new phenomenon
8. Understood
9. Anyone’s fault
10. Incurable
11. Easy
12. Sustainable
13. Irrational
14. A metaphor
15. Internalized fatphobia
16. Prejudiced
17. For white girls
18. A phase
19. Identifiable by size
20. Isolated from family/friends/society
21. Identical to any other eating disorder
22. Useless
23. About anyone else but the sufferer (and potentially close friends/family members whose emotions are deeply enmeshed)
24. For young people
25. For women
26. A ploy for attention
27. Trivial
28. Motivated by someone else’s body
29. Motivated by the sufferer’s body
30. Seriously, not about bodies
31. Isolated from other trauma/emotional issues that the sufferer might have
32. Fun
33. Shallow
34. Simple
35. Definable
36. Caused by any one thing
37. Entirely genetic
38. Entirely socialized
39. Making a statement (except possibly “help!” or “I can’t handle life!”)
40. About you
41. An epidemic
42. Getting more common (hey guess what more awareness does? Leads to more diagnoses!)
43. For you
44. To please men
45. To make women submissive
46. Weakness or powerlessness
47. A problem for you to fix
48. Something you get to define
49. An identity
50. A talking point or pawn for your theories about society
51. Manipulative
52. Blackmail
53. Seriously, still not about you
54. Gender roles taken to the extreme
55. Not really a problem
56. All in your head
57. Solved by “just eating” (or really by eating at all…that’s an important piece but really doesn’t fix the disorder)
58. A lifestyle
59. A fashion choice
60. Limited to anorexia and bulimia
61. Limited by your location, age, gender, race, ethnicity, religion, class, sexuality, education, or really anything else
62. The same as “wishing you were skinnier”
62. The same as weight discrimination
63. The same as skipping lunch that one time
64. Self-control
65. Submitting to patriarchal beauty ideals

Things that an eating disorder is:
1. A potentially deadly disease that is unique to each individual who has it.

NEDA Week: Writing the Experience

One of the things that I have often noticed about those in the eating disorder community is that many of the people in it often have difficulties speaking or telling their experiences, and that often they are far more comfortable with writing as their chosen form of expression (art is also common). As I think about eating disorder awareness, I’m really struck by the ways in which we write down what it is to have an eating disorder, particularly those pieces we conveniently leave out.

In particular, writing is a very different medium from speaking in that we have a lot of time to edit and only put down carefully crafted words. Oftentimes stories change a great deal when they get written down: certain parts are deemed unimportant or not fit for mass consumption, some parts are changed as we retell and rewrite, and we feel the need to create a coherent narrative. Who wants to read a story that ends “I’m still living my life and things are much the same. I learned a few things but I haven’t learned all my lessons yet and I’m still working the way I was through the whole story”?

Even as many of us find it easier to write, coming clean about the experiences of an eating disorder is still incredibly difficult. While the stigma and stereotypes are slowly being eroded, very few people actually want to hear the nitty gritty details of being on the inside of an eating disorder. No one wants to know about the puke you get on all your clothes when you purge. No one wants to know about the bizarre digestive problems and the sheer boredom of anorexia. No one really wants to know all the horrible things you say to yourself when you’re on your own. It’s incredibly difficult to pin down how honest is honest enough but not oversharing, and perhaps even more it’s hard to know how to frame your experience.

Eating disorders are your life. For as long as you have one, it tends to define  you, to take up almost every minute of your day, to affect nearly every decision. Imagine trying to summarize your life for the last year, being honest and giving someone the best insight into what the internal experience is like. This is the experience of trying to write what it is to have an eating disorder. To write it is in its very essence to try to pin down an entire life, to cut some things out, to forget, to choose a focus that may not wholly encapsulate who you are and who you were.

It is impossible to ever be wholly honest when you choose to write a piece about an eating disorder. As hard as it is to describe each individual experience that makes up the moments of an eating disorder, it is literally impossible to ever explain all of them. So what does it mean then to try to write an eating disorder? How do we choose which pieces to leave out?

In part, you define what it is to have an eating disorder by the pieces you choose to write. But you also choose how you want the world to view eating disorders (because as a minority, each one of us of course has to speak for all of us). You decide how to humanize eating disorders. Writing the experience is not telling others what your life personally has been: it is giving others a template for how to understand others with eating disorders. This may seem like a lot of pressure, but unfortunately many people out there will only ever hear one story of eating disorders and it may be yours. Most of us who write our stories know on some level that we aren’t just telling a story, we’re creating a narrative for People With Eating Disorders. This is part of why it’s so hard.

I believe that we’ve reached a point in eating disorder awareness where it’s become really important for us to start telling the ugly pieces. We took the time to write the narratives that show we can be positive and hopeful, the narratives that inspire, the narratives that people can relate to. But now we have to write our difference. No one will be able to help us until we’re willing to show them how we are not like other people, how our minds function in terrible ways, how we can spend hours debating a single bite, the mundane and disgusting and stupid parts of having an eating disorder.

Stories like this: last week my boyfriend was horrifically sick. It was something flu-like. He couldn’t keep anything down, he was miserable, he couldn’t leave the house because there was stuff coming out of both ends…and I was jealous because I knew he would be losing weight and I couldn’t.

I want our narratives to be whole and complex because we are whole and complex.

NAMI Week: Tropes and Strength

This morning on my way to work I was listening to NPR and I heard an interview with a woman who was in remission from breast cancer. She’d written about her experience, but unlike many other breast cancer stories, hers wasn’t bedecked in pink, she wasn’t painfully upbeat, and she didn’t have a story about how grateful she was for the experience. Instead, she spoke honestly about the fact that she wasn’t a breast cancer “warrior”, that it wasn’t about being strong all the time, that it truly sucked and she felt disgusted sometimes when she saw herself without eyebrows or hair, and that in the end her life went on in much the same way as it had before the diagnosis.

As she spoke, I felt some resonance with the experiences I’ve had of talking about eating disorders and the tendency to demand that those in treatment always remain upbeat, to turn the disorder into something you fight, and to gloss over the real and difficult elements of treatment and recovery that absolutely suck. No one honestly tells you how it feels to see yourself gaining weight, or how it feels to eat that first meal in your treatment program, or the circles you go in round and round in your own mind trying to decide what is healthy and what is good and what is right.

There are certain tropes in the eating disorder community about the right way to recover and the right way to seek treatment. The right way is with a positive attitude, with a desire to recover, with a strong inner motivation that turns you into a warrior against the eating disorder mind. The right way is following your meal plan and with mantras and with finding the joy in your life again so that you have the strength to battle on. The right way is by finding your inner beauty, by struggling through mechanical eating until you find love again, by having the very best family ever that you always rely on and always open up to. The right way is by learning the world is huge and beautiful and you are too, by realizing you would never judge others the way you do yourself, by finding your authentic self.

The right way to recover is to hold on to your eating disorder until you’re hospitalized repeatedly and nearly die, realize the importance of your life and then throw yourself into treatment, never looking back despite how hard it is. The right way is with breakdowns on the shoulders of those you love and moments of clarity.

These things are great for some people and I would never tell someone that they can’t hold on to these tropes or strategies if it works for them. Unfortunately there are many, many, MANY people for whom these things just aren’t their reality. Many people get dragged into treatment kicking and screaming, but that doesn’t mean that treatment will always be 100% useless for them. Many people don’t hit that moment of rock bottom and get a burst of clarity and momentum to move forward. Many people don’t find new joy or fun in life again, they simply have to remember how to manage in a contented way as they used to. Many people slog through years of treatment under different programs and therapists without a clear sense of where they’re going until they’ve finally found they have many of the pieces they need to do better.

It can be a wonderful thing to hold onto something positive. It can be inspiring to see that someone else has made it through and is in a better place than they used to be. Many of these tropes seem to have grown out of the idea that we can be strong and we can come out the other side better, the idea that we are not less than others or weaker than others or in need of pity. These are wonderful things to hold on to. But just like anyone else in the world, we also must be allowed to have difficulties and struggles. We must be allowed to have the complex experiences of being human.

Just as it is cruel to deny people of a certain group hope or happiness, it is just as cruel to deny them the experiences of being afraid or anxious or hurt. Part of what I would like to see in the awareness of eating disorders is the portrayal of real and complex people who have eating disorders: people who are sometimes hopeful and sometimes broken, people who work through each day like anyone else but who happen to have a few more things on their mind, people whose lives and trajectories aren’t a straight line down and then a straight line up. 

True awareness is not statistics or cut and dry stories that end just so. True awareness is a conception of how eating disorders fit into the real and messy lives of real and imperfect people. It is listening to someone speaking openly of what it’s like in their life. It’s not leaving out the parts that are hard or scary, or painting the illness to recovery journey as one of black to white. I would love to see more of this awareness.

DSM V and Diagnostic Woes

THE NEW DSM IS OUT AND I HAVE A COPY OF IT! For those who don’t know, the DSM is the Diagnostic and Statistical Manual, essentially the bible of Psychology. It’s what’s most often used to diagnose someone, and if you want insurance to cover treatment you generally need a DSM diagnosis. They’ve been in the midst of some pretty contentious updates for a long time, but I now have my hands on the brand new copy of the DSM-V.  Mmmm, tasty.

 

Of course when I got ahold of it I spent a good half an hour paging through and self-diagnosing, but after that diversion, I moved over to the eating disorder section to see what updates had actually gotten through and how they had phrased them. I was happy to see the inclusion of Binge Eating Disorder, as well as Night Eating Disorder and Purging Disorder as new categories in the manual, but when I looked back at our old favorite anorexia I was…annoyed.

 

One of the most contentious points in the DSM IV was the weight criterion for anorexia. While this has been removed from the current version and replaced with the following: “a significantly low body weight in the context of age, sex, developmental trajectory and physical health. Significantly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected,” there is a scale to determine the severity of the disorder. This scale is entirely based on BMI, with the caveat that a psychologist can make adjustments if necessary. And I must say that the numbers listed on that scale are INSANE. To be considered a moderate case, your BMI needs to be between 16 and 17.  My BMI has never been even close to that. While I generally dislike numbers, and I am going to insert a HUGE TRIGGER WARNING right here, when I was at my worst I literally would go for a week without eating at times. I never ate two days in a row. I was seriously ill. However my body weight never dropped into what would be considered technically underweight by the BMI scale. I would have been considered a mild case, even if I had gained the diagnosis at all (as it stands I was diagnosed with EDNOS because of the weight criterion in the DSM IV).

 

We have gone over and over the harms that come from including weight as a criterion of an eating disorder. First and foremost, it keeps people from getting treatment until they’re already too sick, which is unhelpful to everyone involved. It ignores how different bodies react to starvation. It ignores that people’s weight can fluctuate throughout the disorder or treatment. It’s simply unrealistic. But more than anything, I feel like it shames those people who never get that diagnosis. It tells them that their pain and suffering wasn’t real unless they hit the magical BMI of 17 marker. And I am so disappointed in the writers of the DSM that they would ignore all of the feedback they’ve received from the eating disorder community and still include BMI criteria for anorexia. I’m so disappointed that after all the research and stories and experiences that people have shared that illustrate that an eating disorder is not about weight, we still have to reduce to such. And most of all I’m disappointed that until the next rewrite, more individuals will be stuck trying to navigate a system that reduces them to their weight, even as it’s trying to convince them that they should stop doing that.