What It’s Like: EDNOS

This is the third in a series. Find the first two posts here and here.

This is the point in the series where things are going to get a little hazy. The remaining diagnoses that I have (EDNOS, major depressive disorder, and generalized anxiety disorder) are all big buckets. They cover a lot of people, they look a lot of different ways, and it’s entirely possible that other people with these diagnoses will have nothing in common with my experience of them. So while I did offer a disclaimer on the first post, I want to reiterate in a BIG WAY that this is just my experience and I don’t speak for everyone. There’s also the possibility that these three get mixed together in a big way, so I’ll be doing my best to separate the strands of what’s what’s but I make no promises that there will be clear distinctions between things.

With all the disclaimers out of the way, let’s get on with it.

EDNOS or eating disorder not otherwise specified is kind of a catch all diagnosis for people who have disordered and unhealthy relationships with food but who don’t fit clearly into one of the other diagnoses (anorexia, bulimia, and binge eating disorder).

I have a very restrictive type of eating disorder. I’ve never had binge eating as one of my symptoms, and I exclusively restricted my food intake for about four years before I developed purging as a symptom while I was in treatment (this is fairly common). I likely would have been diagnosed with anorexia if my weight was low enough, but it never quite dropped that far. When it started, it was mostly focused on feeling lost and confused around food (I had been a competitive swimmer for six years and when I quit I wasn’t entirely certain how to eat anymore) before devolving into a desire to lose weight.

Since then it’s become a very different beast. Control has always been an important part of not eating for me. It makes me feel powerful and more than human to go days without food. It gives me the conviction that I am actually capable of anything if I try hard enough, as I have done things the human body probably shouldn’t be able to do.

My eating disorder is how I manage a lot of my anxiety, perfectionism, and OCPD tendencies. One of the main things that I associate with it is a distraction from whatever is actually bothering me, and a way to make it seem like I have some control over my life when things are stressful. I’ve always been more focused on myself as intellectual, rational person than as an embodied person, and so things that remind me of my body can be stressful.

I’ve often felt as if I would be better, more in control, and more powerful if I just didn’t have a body. Not eating is a useful way to ignore the facts of my mortality and embodiedness. But I also can’t stop thinking about them. For years, I could tell people exactly what I had eaten for the last week, at what times, and approximately the calorie counts of each thing. I tend to get a god complex when I haven’t eaten in a long while because my body feels floaty and empty in a way that makes me feel invincible.

I also associate fasting with morality. There’s something saintly about being ascetic in my mind, and I can’t quite shake the connection. I’ve always been fascinated with religion and being “good”, and self-denial is a big part of how society (and particularly Catholics) define morality and godliness. Every time I don’t eat, I feel like I’m being good. I feel guilty when I do eat, regardless of what it is or how much. This has toned down over time, but there have absolutely been times during which I would spend hours trying to determine when it was acceptable for me to eat, how much, what kind of food, etc.

I feel like a failure when I eat too much. Not a failure at a diet or at losing weight, but a failure at being a human being. Sometimes it reduces me to crying in the fetal position because I’m convinced that I’m the actual worst person alive. This can extend to other activities around food. I get anxious about grocery shopping because I can only imagine having ALL THAT FOOD in my house that needs to be eaten RIGHT NOW (don’t even get me started on perishables).

And somewhere under all of it is the conviction that being skinny will make up for all my other deficits. I may not be able to play piano as well as that person, but I sure as hell am skinnier than them and that makes me better. It’s a very competitive mindset that doesn’t look at me alone but looks to other bodies to define acceptable. This might go back to my inability to find a grounded identity without feedback from others. Of course my view of myself is distorted in comparison to others, and I don’t actually care how big other people are as long as I am THE SKINNIEST.

There’s also a fear of letting myself go. If I let myself eat this thing, what’s to stop me from eating everything else in the whole world and bloating up into some sort of horrific parody of a human body? Again, I don’t find other people who are large disgusting, but I have a hard time grounding my worth in anything but my body.

I do find my own body disgusting though. I spend a lot of time trying not to look in mirrors because when I do I will sit and pick at every tiny flaw. I do this in other parts of my life too, but my body is so obvious and immediate that it’s easier to focus on it instead of the flaws I think I have as a person. Worse, when I am aware of those flaws I try to punish myself for it by not eating. I don’t believe that I deserve food or space or confidence. If I give myself even a little bit of those things, I’ll probably go overboard and become a narcissistic asshole. No food means that I’m keeping myself humble.

I also tend to fall apart when I don’t have structure in my life. Food rules became a way to organize my life. For a long time the rule was never eat two days in a row, and while I’ve managed to adjust that rule quite a bit, I still have a very hard time eating before noon. It’s just not what I do (or so I tell myself). I also find some safety in dictating how I eat: I don’t have safe foods, but I hate meals that are composed of more than one thing. This is why I tend to just put all the stuff I want in one pot and mix it up so that it’s like only eating one thing.

Probably the final important element of EDNOS for me is that I have an overactive brain and not eating/focusing on food are both ways to keep myself from getting bored and stressed. My mind processes things quickly. It doesn’t always do this well (I make a lot of sloppy mistakes), but it’s constantly going and going fast. Sometimes this means that I get stuck on a thought if there’s nothing else there to replace it. This would probably play into the OCPD tendencies I have as well as my anxiety disorder and my EDNOS. Where I would often in the past be turning over and over something that had embarrassed me, something I was worried about getting done, my eating disorder allowed me to change that to constant thoughts about food.

There’s a lot more to the experience of having an eating disorder, but the strongest feelings are self-hatred, guilt, and desperation to be good. These get expressed in a lot of ways, but they dominated my experience of EDNOS.

Cross Cultural Eating Disorders

It’s commonly held knowledge that eating disorders are a Western phenomenon. They came about because of beauty standards, small models, and photoshopping. They’re on the rise! Panic! It’s an epidemic!

Only this isn’t necessarily supported by a hard look at the data. One of the problems with assessing whether or not eating disorders exist in other cultures is that the diagnostics for the disorders were developed in the US and Western Europe, leading to a focus on the presentations that we tend to see in those places. As an example, one of the diagnostic criteria for anorexia is “Intense fear of gaining weight or becoming fat, even though you’re underweight.” While this is the motivation for many people to refuse food, it is not true of everyone who displays many of the symptoms of anorexia, and may simply have different motivation.

There are a few different sources of data that contradict the idea that eating disorders are culturally bound or that they are caused by Western beauty ideals. We can look at history or we can look to minorities or other countries that may not have been wholly influenced by Western concepts.

Historically, we have strong evidence that people have been choosing to starve themselves for hundreds of years. The book Fasting Saints and Anorexic Girls traces the history of self starvation from the earliest records through to the first recognition of eating disorders as psychiatric conditions. While the book suggests that these are distinct phenomena because in the past few people have practiced self starvation due to a fear of fatness, behaviorally it shows many parallels.

One particular group of individuals that have similar behaviors to modern patients with eating disorders are religious fasters. These tended to be young women who had little control over their lives in many ways and who chose to abstain from food for extreme periods of time in order to be morally better by ignoring their bodies and focusing on their spirits.

The book includes some quotes from people who chose to restrict their food intake in times past, and concerns about morality, space, selfhood, and perfection come up again and again, just as they do in current conversations about eating disorders. Many of the experiences are couched in religious terms, but the underlying fears (“I am not good enough”, “there is something wrong with my body”, “I need to be better”, “I don’t want this life”) could just as easily be pulled from a study of eating disordered patients today.

Individuals throughout history have chosen to abstain from food, often falling into something like depression and priding themselves on their ability to go without for long periods of time. Their motivations have changed as their social milieu has changed, going from religious, to entertainment, to aesthetic. However many of the sentiments that these individuals express ring similar across time and space.

“It’s like I never knew what self-respect was all about until now. The thinner I get, the better I feel . . . I’m proud of my stoic, Spartan existence. It reminds me of the lives of the saints and martyrs I used to read about when I was a child . . . This has become the most important thing I’ve ever done.” This kind of quote could easily be from a religious faster or a modern individual with anorexia.

Over at Science of Eating Disorders, Tetyana posits “Religious and spiritual reasons are not the only factors that could be contributing to AN in non-Western countries (or Western countries before the ‘thin ideal’). Personally, it would seem to be, that anorexics in those times, would just attribute their desire for weight loss to those reasons much like today it is often attributes to a fear of being fat. But, both of those could just be post hoc rationalizations on the part of the sufferer, to make sense of their otherwise perplexing desire to restrict their intake and lose weight. That’s my feeling.”

I’ve written elsewhere about how restricting food made me feel powerful, godly. I often imagined that my body was not subject to the same requirements that others were. Only the weak needed food, but I decided my morality, my meaning, and my body for myself.

“Comparable to the ascetic practices in the history of Christianity are the fasting practices in the Chinese Daoist tradition (Eskildsen, 1998). These practices sought to transform the body as a means of gaining immortality…  The history of Chinese thought thus suggests that, in certain traditions at least, the emaciated body has been highly valued and pursued in a manner highly reminiscent of Western observances.”

But in addition to historical examples, we can also look at current cases of eating disorders in non-Western countries. It’s a common trope that these are rare, and when they do appear they are evidence of growing Western influence in the country. The problem with that assumption is that many individuals who might be diagnosed with an eating disorder but lack fatphobia are not given the diagnosis. The unthinking assertion that the rise of eating disorders correlates to increased Western influence doesn’t look at the lived experiences of individuals in non-Western countries.

Again, from Science of Eating Disorders:

“For example, one study found that in British Asian girls, dietary restraint was correlated with traditional (rather than Western) values (Hill & Bhatti, 1995). This finding was supported in a study by Mumford and colleagues (1991) who essentially found the same correlation. On a Caribbean Island, with little Western media, Hoek et al (1998) found that the prevalence of AN was comparable to Western countries and a study by Apter et al (1994) showed that a group of village Muslim women (with minimal exposure to Western values) had eating pathology scores that were indistinguishable from patients with AN.”

Many of the patients quoted in this article don’t talk about a strong desire for thinness or weight loss, but point to their bodies as the site for other struggles in their lives, particularly around control and selfhood.

“… food restriction arose from a sense of powerlessness in the family context, it is possible that the patient experienced her emaciation as egosyntonic, with her low body weight consonant with the goal of not wanting “to ‘give in’ to her family, especially her mother, who forced her to eat even when she was not in a mood to.”

Again, these individuals exhibit many of the same behaviors as individuals diagnosed with eating disorders in the Western world, but don’t show the obsession with thinness or fatphobia that we assume is an essential part of an eating disorder.

An eating disorder is a coping mechanism that allows an individual to survive extremely difficult situations or feelings. Physically, it has effects that make it easier to live through strong emotions: it numbs out painful things, it leaves you sleepy and sedated, and it also provides a kind of high that makes you feel accomplished and safe. These are biological results. They are the same no matter where you are or when you’re living. And they are effective at helping someone survive a difficult situation no matter what kind of difficult situation that is: it could be not living up to religious expectations or not fitting into a beauty ideal.

And so I am continually dismayed at ridiculous articles like this that seem to think eating disorders are not only limited to the West, but also limited to young, naive, shallow teen girls who can’t figure out how to do basic things like feed themselves. Diagnosis, demographics, and etiology are complex and confusing. If you don’t know a little something about mental health, don’t write about it.

Embodiment

Eating disorders are about bodies. Duh. They’re about fat and losing weight and body image and skinny models and photoshop. Wait, what? That’s not right. Eating disorders are about the experience of being in a body, the limitations and lack of control that being embodied necessitates. Much better. I’ve been wanting to write about this article at Science of EDs on embodiment for quite some time, but I haven’t known exactly what to contribute beyond “yeah, that!” The article looks at a study of embodiment in which participants rated how much they experienced their body externally, through the feedback and sight of others, through objective measures, or through physical ways of controlling their bodies. Unsurprisingly, high scores on these measures were correlated with eating disorders.

When I read this, I felt a resonance with these experiences and questions: yes, what drove my eating disorder was a feeling of discomfort with having a body, an inability to imagine how my “self” fit into that body, a confusion about how my body actually fit into people’s conceptions of me, and a kind of certainty that the only time I really was in my body was when I was doing something to it or with it. But embodiment has always meant more than that to me. Having a body means you will die. That’s a pretty basic fact at this point in time (although there is the potential that through technology we will change it). Having a body also comes with a variety of limitations: you can only be doing one thing at a time, be in one place at a time, you are bounded by temporality and space. Even if you’re a highly capable person who can probably accomplish nearly anything they try, your embodied nature says that you can only try a limited number of things.

Bodies, and particularly bodily functions (like eating) are a constant reminder of these facts. For much of my life, I have not been able to stand being present in my own body (aware of my senses, my location, my body) because it was so limited. Some people are able to accept these limitations without struggle. Some people don’t find that being in a body is a constant reminder of their miniscule nature in the entirety of reality. But many of the people that I have met who also have eating disorders are the kinds of people who have been told their whole lives that they can do whatever they put their mind to, that they can do so at a high level of accomplishment, and that they can change the world. The perfectionism that this breeds hates limits, even ones that are utterly reasonable (like not being able to live forever).

Some people have certainly wondered why those with a high drive for control and perfection choose their bodies as the realm on which to enact their personal battles. The experience of embodiment as mortality and limitation gives a good window into this connection. It might seem that the whole world is not within our control, but the most basic level at which we have no control is the fact that we are embodied, our bodies do things we don’t want them to, we can get sick and die, and having a physical presence inherently limits the ways that we can affect the world.

It’s quite possible that few other people with eating disorders are consciously aware of hating their body because it represents the fact that they cannot do everything they’ve been told they could; I cannot cure cancer and reconstruct Proto Indo-European and become a bestselling author and be a feminist/atheist activist and play taiko for a living and learn neuroscience and solve the problem of consciousness and star in an amazing TV show. I have to pick and choose, and knowing that I am giving up on some potential opportunity is painful. But even if others don’t consciously recognize that the reason they can’t do all this is because they are physical beings, on some level I suspect they feel it: it comes out in the guttural anger at the body and at the failings of the body, it comes out in the unrealistic expectations of perfection in every way, it comes out in the unnaturally high achievements and the insistence that slack is for other people.

Embodiment might be at the heart of all eating disorders, but not because of bad body image or a struggle to reconcile self-image with the perception of others. Somewhere in there, all of us want to be little gods, capable of anything. Bodies will always remind us that we never can be.

 

Hierarchies of Eating Disorders: A Spiritual Perspective

If you’re someone who reads lots about eating disorders, you’ve probably already seen this article by Maree Burns floating around recently. For those who aren’t enmeshed in the world of post-structuralist and feminist critiques of eating disorders, you may want to try to read it anyway. It’s a little long and at times jargon-y, but it’s also fascinating and makes important points about the hierarchies we set up around eating disorders. Similar to Burns, I will not be using this post to posit anything about the actual nature of eating disorders, but rather about how they’re constructed in the common conscience of Western society.

There are many points in Burns’ article that I’ve spent time grappling with: the fact that anorexia is both held up as perfect control and derided as sickness and disgusting, the way anorexia and bulimia can be mapped onto the virgin/whore dichotomy, and the tendency to view anorexia as the ideal eating disorder. There is an hierarchy of eating disorders, one that is held up by nearly everyone. Anorexia is considered cleaner, more respectable. Many people even view many of its characteristics as positive, but simply taken too far. On the other hand, bulimia is considered disgusting, animalistic, and out of control.

Burns looks at this hierarchy from the perspective of post-structuralism. I’d like to take a different perspective that I think can illuminate some other elements of the hierarchy and the ways that eating disorders make a certain kind of sense. Spirituality is something that Burns does not touch on at all in her article, despite the fact that moral language runs rampant in descriptions of eating disorders, and in the past eating disorders often happened in religious contexts.

Throughout her article, Burns draws on the Western concepts of dualism. She looks at it particularly from a feminist lens, in which female is associate with body/disorder/evil/animal, and male is associated with mind/rationality/control/order. However there is a slightly different version of this dualism that may actually shed more light on eating disorders, which is the body/soul split. Burns points out that society (including pop culture, psychological professionals, and those who actually have eating disorders) makes negative judgments of only certain elements of eating disorders. This includes the behaviors of bulimia (especially purging) and the skeletal body of someone with anorexia.

She posits that these are different types of judgment: the judgment of bulimia is about actions that don’t fit into the appropriate feminine mold, while the judgment of anorexia is about a body that makes a mockery of the thin ideal.  She looks to how each of these “negatives” deviates from acceptable feminine roles and how that deviation results in judgment. In contrast, the behaviors that make up anorexia (self-denial and self-control) are often viewed positively as movements from feminine (bodily) to masculine (rational).

However there is another way to interpret the negative judgments we cast on those with eating disorders and the ambiguous position of anorexia in society. We can find a clue in the religious language used by starving saints in past centuries and co-opted by some people with anorexia today (including myself). Oftentimes this language circulates around dismissing the body completely and moving into a fully spiritual realm. The prioritizing of the next world over this one still holds sway in Western culture (despite frequent cries about our society falling into horrible materialism).

These criticisms of eating disorders reveal that bodies, particularly bodies that remind us that we are animal, mortal, and fallible, are what receives criticism. Negative judgments of bulimia often center around the corruptness of the body and through the body, the individual. The body is seen as the ruler in this situation, but the focus on the body is often given a moral meaning. People with bulimia binge, however the binging on food is often extended into other realms: they’re posited to be kleptomaniacs, sex addicts, or out of control. Most of these assumptions focus on impurity and the fact that binging and purging “taints” the individual. I’ve often heard them referred to as “failed anorexics”. This means that they have failed at the purity that those with anorexia achieve because they allow their body and its needs to overtake them. The obsession with “how much did you eat” and “how did you throw it up” reveal society’s dark obsession with the animalistic elements of bulimia and how it affects the body, rather than an interest in the inner lives of those with bulimia.

Burns suggests that the negative judgments of bulimia are made in contrast to the self-control (often interpreted as rationality) of anorexia. She says: “Self-starving is also paradoxically privileged as a signifier of those qualities that have historically been associated with ‘masculinity’, such as self-control, persistence, transcendence of the (labile feminine) body, and strength” However I would argue that this type of self-control is often associated with spirituality rather than any kind of rationality, as she suggests. People recognize the irrationality of anorexia in the context of the material world. However starvation, asceticism, and self-denial have a long history in the religious tradition of transcending this whole plane of existence.

Something that I’ve posited for quite some time is that the end goal of anorexia is to become pure spirit, to no longer be held up by worldly, finite things.This is why anorexia is often held above bulimia. However the reality is that people with anorexia do have bodies and their actions do impact their bodies. When their bodies begin to appear abnormal, we’re reminded again that they are human, finite, and mortal and that their bodies are falling apart. We are reminded of death (see: focus on the “skeletal” nature of the anorexic figure). And especially as Western societies move closer to secularism, this reminder of death is viewed as disgusting and disturbing, garnering criticism. The combination of heavenly motivation with dying body creates the mixed reaction of most individuals.

This additionally explains the feminine coding of anorexia. It falls in line with the tradition of women who fade away into martyrdom and make their femininity acceptable by rejecting their bodies unequivocally. It is part of the “pure” woman, the history of women as keepers of the spiritual well-being of their families, of women as more moral and in touch with religion than men. Part of the push/pull response to anorexia is the fact that the very deadliness and extremity of it is considered admirable by some. Not everyone can do it: it refuses to accept human limitations and so in some ways appears almost supernatural. The extreme refusal of finitude almost appears to be a martyrdom, especially for those who are trapped within the eating disorder. There’s even a kind of cultish interest in the fact that many people with anorexia suffer from ammenorrhea. Their bodies no longer even produce blood, one of the most obvious markers of human finitude.

On the flip side, bulimia reminds us of our more animal side. We think of the behaviors not as outstanding or amazing, but as mundane and slightly disgusting. We associate overeating with animals, with bodies, and we view vomit as wholly animal (because bodily fluids are gross ya know?). It’s very easy to view the dichotomy between bulimia and anorexia as a struggle between our lower natures and our higher spiritual calling.

And of course if we are considering female morality and spirituality, sex must be play a role. The connections between food and sexuality have already been identified, particularly in Burns’ article. Abstinence is a largely spiritually driven quest. Few secular people feel the need to be abstinent for moral reasons (of course there are some, but it’s not nearly as common as within religious circles). The drift of the spiritual meaning of sexuality into food also colors our conceptions of eating disorders. Just as the body is dirtied and corrupted by inappropriate or out of context sex, so it is by inappropriate or out of context food: a binge. An important part of this connection is the way that sexuality is used to dehumanize, animalize, and objectify women. When we use phrases like “orgies of eating” to describe a binge, we sexualize not only the food, but also the individual participating, and through that sexualization we objectify. It portrays people with bulimia as less human, as more animal. The objectification of women through hypersexualization plays directly into the ways that anorexia (anti-sexual) is viewed as humanizing, pure, and spiritual while bulimia is viewed as animalistic: those who engage in it are objectified just as others who are hypersexualized are.

While the role of male/female dichotomies plays an important role in eating disorders, we should also consider the dichotomy of worldly/heavenly and how that can explain some of the behaviors and attitudes we have towards eating disorders. The history of eating disorders (particularly the long history of female saints starving themselves to death) is a good place to start in this perspective.

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.

Taking the Long View: On Recovery and Motivation

Recovery from a mental illness is a rough gig. I’ve written many times before about how I wish people would be more honest about just how difficult it is and what that difficulty looks like. Right now, my motivation is low. I want to be done with this stupid, frustrating, painful process. I want people to just leave me alone to wallow and make bad decisions. I want to be allowed to feel bad.

This is basically how I feel all the time right now

This is basically how I feel all the time right now

Now in the traditional narrative of recovery, this means that I’m slipping. It means the “eating disorder voice” or the depression is getting louder. It means that what I really need to do is double down and fight harder. It’s part of the “roller coaster ride” of recovery. If I don’t nip it in the bud though, then I’ll have given up, I’ll have wasted my progress. I’ll be back to square one, fallen harder than I did the first time and it’s all because I didn’t have “the proper motivation” or I didn’t “fight hard enough”. So if I’m slipping I need to keep my eye on the prize of recovery, think about how great I’ll feel, post a few affirmations around my house, and remind myself once again that I can’t live my life the way I have been living it (because who wants to live in the hell of an eating disorder if you can have recovery, amirite?)

If I was telling the story of my eating disorder, that would be the expectation of how I’d frame this. But that is not the reality. Here is the reality.

Recovery sucks. By most basic cost/benefit analysis standards, it’s a really risky, difficult, long venture. It takes flipping forever, and the time that you put into treatment is not fun. In fact it’s more than not fun: most of the time you feel even worse during treatment than you did when you were happily living out your delusion that starvation was the way to a great life. Things have suddenly gotten a whole hell of a lot more complicated and you can’t just rely on rules anymore. So say you’ve been trucking along in your mental illness and then treatment comes and hits you like a ton of bricks. You spend the next 2/3/4/5/forever years working through mountains of crap. And those years SUCK.

And the more you realize that they suck, the more you realize that a lot of the suckiness will still be there even if you do “recover” because life isn’t easy and being healthy isn’t easy and it’s hard work to enforce your boundaries and balance your needs with the needs of others and fight against sexist and damaging media and somehow put together a clear and cohesive identity that can stand up to the trials of life. So you get this picture that in the long run you’re going through a whole hell ton of suffering right now to maybe feel like you can cope with the fact that life is really hard later.

Now pile on the fact that it often looks as if you’ve made no progress whatsoever. Seriously. I’ve been at this for about 3 years (with the same therapist), through intensive programs, groups, dieticians and many, many, many hours of therapy, and a lot of commitment. Three years is a long time to be spending at least 2 hours every week in therapy and most of the time in between wrestling with all the hard questions. And yet when I think about the things that really get in the way of feeling content or grounded, I see no change. Perfectionism still drives me. I still feel unlovable. I still cannot accept praise and focus exclusively on the negative. I can still be flattened emotionally by one negative comment. I still personalize, I still tend towards black and white thinking, I still feel anxiety for no reason, I am still afraid of social interactions…

Logically, it makes sense to be a little low on motivation when there is little evidence of how far you’ve come, much evidence of the pain you’ve suffered and will continue to suffer, and no guarantee that things will be a whole lot better if you continue to work (for another 3/4/5 years?). Part of recovery is trying to make sense of what is worth it and what isn’t, what life can or can’t be like. This isn’t some sort of slip, this isn’t an indication that I just need to fight harder. This is coming to grips with reality.

But there’s another truth and it’s one that I’ve had a really hard time accepting. It’s about the long view. I spent the better part of 20 years developing these really bad coping strategies. It will take me a long time to change them, nearly certainly more than 3 years. For many things that I care about I am willing to invest huge amounts of time (schooling as an example), often because I can see that the end goal is worth it. And many times I can make these investments on faith (when someone tells me that I’ll get a diploma at the end as an example). With nearly everything else in my life, I can take the long view; I am willing to put up with the pain of the now to get something in the future, even when that something isn’t happiness or a perfect life. Why does the pay off for treatment have to be held to a different standard?

Now there are very real differences here. I like school, the pain that I’ve experienced while in treatment far outstrips anything else I’ve ever felt, and the evidence I have of the benefits of recovery aren’t as strong as the evidence I have of many other things (that, for example, a higher degree would make my life a lot easier). Recovery is harder than anything else I have done in my life because when I look at it logically I can’t guarantee that I’m making the right choice to pursue it. But if I look at the long haul, I can see that I can’t come to the conclusion that it’s failed yet. The experiment has to continue. And I do believe that when people are waning in their motivation, it’s because they are re-analyzing the long view and that view is scary.

But I hope others can join me in realizing that it has to be long, but we are capable.

 

 

 

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.