Anniversary

October 15th was my three year recovery anniversary (ie three years since I last binged and purged and began really working on recovery) which is pretty freaking’ awesome.

But you know what’s even more awesome? I didn’t even remember until today. On Monday I was too busy going to classes, having lunch with my boyfriend and talking about wedding planning (!), taking the dog to the park, planning a shopping trip with a good friend, and playing soccer to stop and think about the significance of the date. Recovery is the foundation upon which I have built this really amazing life but most days it is not something that takes conscious thought and effort. And THAT is what real recovery is all about.

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My boyfriend is kind of amazing

My boyfriend (fiance actually but we’ve decided not to ever use that word because its ridiculous) wrote a blog post about Lady Gaga, body image, and eating disorders on his all things nerdy blog and I thought I’d share it here. His support over the past five years kept me alive and keeps me in recovery. I am so lucky to be with someone who has gone above and beyond all reasonable expectations to educate himself about my illness and is a very outspoken advocate in his social circles.

Hi Folks,

While I know most of you probably follow me for discussions about game design, I’d like to take a moment to talk about something serious that has had a huge effect on my own life, through learning to support someone else, and answer any questions you might have about it.

So… due to trashy media outlets giving her crap about her weight, Lady Gaga recently “came out” as having a history of suffering from eating disorders (specifically anorexia and bulimia) and started her own social media campaign to promote positive body image. While promoting positive body image and attempting to subvert our culture’s absolutely horrible ideas about food are commendable things, Gaga’s efforts have led to yet another round of misinformation about eating disorders, what causes them, and how we can help those that suffer from them.

The problem is that nearly everything you’ve heard or read about eating disorders is factually incorrect and, in many cases, actively harmful.Eating disorders are not caused by negative body image. Eating disorders are not instances of dieting that gets out of hand. Sufferers are not embarking on a long, slow process of killing themselves due to superficial obsessions with the way they look. If you’ll notice, these are all not-so-subtle ways of blaming the sufferer for having an eating disorder. They are also not caused by parents that are overly critical or growing up in an otherwise abusive environment.

Instead, eating disorders are—as far as we can tell from modern neuroscience so far—a mental illness or a number of different mental illnesses that have a strong genetic component and manifest as highly maladaptive responses to starvation. Many people with eating disorders describe “falling into them” when they experience a significant weight drop for some reason (illness, over-exercise, restricting food) and then discover that it greatly reduces their overall level of anxiety and improves their mental health. Of course, maintaining a low or malnourished level of body weight eventually brings on a host of other mental and physical issues, and it is often difficult to diagnose which of those are aspects of the eating disorder and which are the byproducts of starvation: anxiety goes up, OCD-like behaviors are common, compassion and the ability to really think about people other than yourself disappears, you become obsessed with food, and experience a heady rush of adrenaline and endorphins (the so-called “runner’s high”) as your body tries to promote food-acquiring activities to save itself. These are all natural responses humans have developed over millions of years, but some people have an irregular reaction to this—and we don’t know exactly why yet, though neuroscience is helping us get closer—that makes them want to stay in this zone of near-starvation instead of getting back to proper health.

Or, at least, that seems to be the case for anorexia, bulimia, and the “in-between” categories of binge-purge anorexia and the unhelpful EDNOS (eating disorder not otherwise specified). It’s also likely that binge eating disorders—which are hardly ever talked about in these discussions—also come from a maladaptive physical response to the body being underweight, where it tries to keep refeeding itself beyond normal levels in order to guard against future starvation. But there’s so much shame and misunderstanding surrounding binge eating (even more so than around bulimia) that it is much less often discussed and studied.

So those are the facts, more or less as we know them right now. Hopefully neuroscience will be able to give us more information about the brain states and genetic predispositions that cause eating disorders and whether they can be avoided.

In terms of treatment, what this means is that doing traditional talk therapy that tries to uncover the root causes of an eating disorder (as a form of self-destructive behavior) in the sufferer’s personal history and family background is almost entirely useless, completely beside the point, and misleading, in terms of encouraging the sufferer to blame themselves or others for the way they feel and the maladaptive behaviors they use to cope with how they feel. In many cases, people will have experienced terrible things in their lives or over the course of having an eating disorder (which is such a horrible experience that it can cause PTSD by itself) and will need help dealing with that at some point, but people with eating disorders are nearly incapable of thinking rationally and productively about those issues while they are in starvation mode and their body and brain are not functioning correctly. We don’t expect alcoholics to deal with their issues while they are still drunk most of the time, and we shouldn’t expect people who are underweight to be able to deal with their issues until they have been back up to a healthy, stable weight for a long period of time and their body has stopped panicking. That’s the equivalent of rehab for eating disorders.

While all that seems relatively straightforward, it’s complicated by all the misinformation that exists about eating disorders and the way people constantly associate them with negative body image or a history of abuse. Even those suffering from eating disorders constantly do this, because it’s the way they make sense of their own experiences! While it’s certainly true that dieting can lead to the weight loss that “triggers” the maladaptive starvation responses in those with eating disorders, there are plenty of other things that can cause unhealthy drops in weight (such as illnesses and over-exercise, with a lot of people with eating disorders being former competitive athletes). Certainly, hardly anyone talks about eating disorders among the male population, though those are less often surrounded by misleading associations with weight and dieting.

But, for a moment, imagine you are suffering from an eating disorder and that you have been told that it’s because you’re obsessed with superficial ideas about how your body should look. You’re going to talk therapy and have discovered that you acquired these ideas because your mother was always making negative comments about your weight (maybe due to her own undiagnosed EDNOS-related issues, since this is a genetic thing that maybe runs in your family), so you’re trying your best to deal with that but can’t seem to stop using the behaviors that keep yourself at an unhealthy weight. It feels like such a trap, right? Something that has been done to you and that you have done to yourself. It’s easy to be self-critical, self-destructive, and despairing. And this is the situation of 95% or more of the people who suffer from eating disorders, because there is so little appreciation of what actually causes them and what the road to real recovery looks like. And that’s even discounting the horrors of the “pro-ana” movement or the tendency of anorexics to view recovery (or even bulimia) as a failed attempt to “succeed at anorexia.” Believe me, it gets much worse, way worse than you could ever imagine.

And the only way it gets better is for more people to understand the actual medical facts about these disorders and share them with sufferers or the people who are supporting them. Really, it feels very similar to the “coming out” that surrounded autism in the past few decades. People used to think autism was caused by poor parenting! WTF?!

None of this, of course, means that we shouldn’t fight to promote healthy body image. Negative body image and the constant “food is poison” mantra of our society are unbearably awful and cause so much misery. But in the process of fighting them we shouldn’t use misleading and factually incorrect ideas about eating disorders to justify why they are bad or destructive. It’s tempting! However, it’s ultimately damaging to our understanding of eating disorders and that’s something that—in all seriousness—kills people.

In reality, the #1 cause of death among people with eating disorders is not suicide (very common) or organ failure (heart attacks, often), but ignoranceamong those around them, which renders it impossible for sufferers to get the help they need.

So please: let people know the actual facts—even in your own imperfect understanding, even if it’s just gained from this post—and tell them to seek out better information about eating disorders. The best organization that I know of is FEAST (Families Empowered and Supporting Treatment of Eating Disorders) and their website is a great place to start.

I’m also happy to answer any questions and discuss any related topics. I’m no expert but I’ve spent the past 5+ years educating myself and being educated by others. I know this can be an awkward issue, but the only way to make it less awkward is to start talking about it openly.

My Recovery ABC’s

Carrie shared this a while back and it inspired me to do my own recovery ABC’s. Some of these things were important right from the start and others were important in solidifying my recovery and moving forward and this is by no means an exhaustive list of things that were necessary or even helpful in my recovery process.

Adjusting expectations: I had to make recovery my priority above all else and that meant adjusting my expectations of myself in other areas of my life. It meant not working fulltime for quite a while, not rushing back to school, and minimizing stress in my social life. Of course, stress was unavoidable at times but I tried to say no to any obligations that would make the necessary recovery actions any harder. They were hard enough already.

Blogs: Reading blogs of other recovering/recovered sufferers was a great way to reassure myself that whatever I was going through was normal for the recovery process. It helped me feel less alone, less crazy, and gave me hope that things would get better. I spent many hours looking for recovery support online and unfortunately found a lot of unhelpful stuff. The good stuff was priceless though. Katie and Carrie got me through some pretty tough times.

Compassion: Treating myself with compassion meant realizing that I had been sick for a long time and expecting myself to get better overnight wasn’t fair. When I slipped up and restricted at a meal or had a panic attack in a social situation or stayed curled up in bed because of my body dysmorphia, beating myself up only ever made the situation worse.

Dialectical Behavioral Therapy: I love DBT so much. Its the only thing I got out of treatment that has proven useful in the long term. Mindfulness, radical acceptance, and distress tolerance skills are still things that I use everyday. I truly think that everyone, even those without a mental illness, can benefit from DBT.

Educating myself about my illness: This was so so important. Learning about the biological nature of eating disorders taught me the importance of nutritional and weight restoration. It also allowed me to stop blaming myself and my parents for my illness.

Forgiveness: One would think that forgiving myself and my parents would follow seamlessly from educating myself about eating disorders but it actually took some real mental effort to get my emotions to line up with what I knew intellectually to be true. This was tricky too because even once I stopped blaming my parents for CAUSING my illness I had a lot of anger towards them about their reaction (or lack thereof) to it. It hit me one day like a ton of bricks: forgiving someone for something doesn’t mean that it was okay that it happened in the first place or even that you are not still hurt by what happened. It means that you are tired of carrying that hurt around with you all the time and letting it haunt all your interactions with that person. Forgiving my parents (and other people who had hurt me) wasn’t something I should do for THEM, it was something I needed to do for ME.

Goals: Keeping my long-term goals in mind helped me stay motivated to continue with recovery even when it was hard (and it was almost always hard). I knew I wanted to be a good mommy to my puppy, to have a healthy relationship with my boyfriend, to go back to school, and to have kids someday. And I knew none of those things would be possible with an eating disorder.

Help: Asking for it when I needed it, accepting it when it was offered. I wouldn’t be where I am without the support I received from my boyfriend, friends, nutritionist, and psychiatrist.

Interests: Once I had a foot solidly in recovery, I came to realize that I had very little idea of who I was outside of my mental illness. I had been defining myself through it for a decade and although I had some other interests they had all taken a back seat to being sick. Exploring what the real me was interested in and enjoyed doing was important and also kind of fun. Almost three years into recovery, I am still learning things about myself like I like ice vanilla lattes and playing tennis.

Just do it: Thinking too much always gets me into trouble. A lot of recovery is just about putting in the time, the repetitions of recovery behaviors. Sometimes (often) I had to tell my brain to just shut the fuck up. The good old Nike slogan became one of my recovery mantras.

Keeping track: I found it helpful to keep track of how long I had been binge/purge free. Call it OCD or perfectionism but not wanting to break the streak was the only thing that through sometimes.

Learning to stand up for myself: I had to learn how to assert myself to other people. That included my parents, friends, employers, and definitely my treatment team. I was the one in charge of my recovery – the only person I had to advocate for myself – and I had to be able to say no to requests and extricate myself from situations that posed any risk to recovery. I learned to say no to job offers that interfered with meal times, tell my friends that I absolutely did not want to hear about their diet, tell my mom that I couldn’t handle hearing about her problems, and tell my treatment team when something wasn’t helpful.

Meds: This isn’t part of everyone’s recovery process but for me taking my meds everyday in the correct dose was (and is) crucial. My eating disorder (still) likes to try to convince me to skip my meds because it is a manipulative fuckwad and it is NOT okay.

Nutrition: Without full nutrition, full-time you have nothing.

One moment at a time: One of my recovery mantras was “I can make it through this moment without hurting myself”. It felt too daunting to think about never using behaviors again so focusing on just the present moment was helpful.

Planning ahead: When I knew I was going to be facing a situation that might interfere with recovery in anyway I made a plan for how to deal with it ahead of time. I made a “challenge” plan that would push my recovery boundaries (eating a new food or eating in a new situation) and I made a “safety” plan ensuring that I got full nutrition even if I could not follow through on the challenge.

Quit negotiating with ED: In my past recovery attempts I had always been willing to compromise with my eating disorder. It was ok that I counted every calorie I ate because I was eating a healthy amount. It was ok that I weighed myself everyday and kept my weight within a very narrow range because it was a healthy BMI. It was ok that I was walking X number of miles everyday because I wasn’t running or going to the gym. I thought I had to negotiate with my eating disorder because pushing myself beyond that would be too scary and would send me running straight back to full-blown ED behaviors. But I was wrong. It was keeping one-foot in the eating disorder that lead to relapse time and time again. Only full recovery is lasting recovery.

Reflecting realistically on the past: When things really sucked, and they sucked a lot in the first year of recovery, I had the dangerous tendency to look back on my ED through intensely rose-colored glasses (ie I was skinny and everything was so much better and even when things were hard at least I was skinny whereas now I am fat and miserable all the time). I found that looking back on what I was trying to escape from was just as important as looking forward towards what I wanted from recovery. Forcing myself to focus on what it really felt like emotionally and physically in the depths of my eating disorder was powerful motivation to keep going no matter how shitty things were right at that moment.

Separating myself from ED: Mastering this mental trick was crucial to my recovery. If I could frame using behaviors as something my ED was trying to make me do as opposed to something I actually wanted to do it was easier to resist the urges. I really hate being told what to do!

Trust: Trusting that my body could regulate its weight without my interference. Trusting that my nutritionist was one my side and wasn’t just trying to make me fat. Trusting that my boyfriend would love me even if I got fat. Trusting that all the pain was worth it because life would be so so so much better in recovery.

Understanding my “triggers”: So I pretty much hate the concept of “triggers” because it that there was something external making me use eating disorder behaviors when really I was using eating disorder behaviors because, well, I had an eating disorder and the so-called “triggers” were just normal life stuff. I think of triggers more as things that made doing necessary recovery behaviors more difficult, things that broke down my  defenses against ED. And understanding – and avoiding – those things was important until my recovery was really solid. For me “triggers” included lack of sleep, crowded/noisy places, tight clothing, arguing with my mother, full length mirrors, certain tv shows, almost all magazines, a lot of specific locations in the Boston area that I associated with ED behaviors, being in a bathroom after a meal…and many other things.

Values: Having an eating disorder makes you act in ways that are in stark contrast to the values you actually hold. The fear of eating/not binging/not purging/not exercising/etc over-rides all moral compunction you may have about lying, cheating, and stealing. I said horribly hurtful things to my parents and my boyfriend. I took roommates food to binge on. I lied and lied and lied. I was incredibly self-absorbed. One thing I tried to focus on in recovery was the opportunity to live a life that really reflected my values and morals. I value honesty and compassion and gratitude and relationships built on trust and respect and I LOVE that ED can’t make me compromise those values anymore.

Weight: I had to gain a lot more weight than anyone would have predicted and it was really fucking hard. Some days it is still pretty hard to deal with living in a body I am so uncomfortable with but I have accepted that it is not optional. I need to stay at this weight to stay healthy and it is slowly, slowly, slowly getting easier.

eXposure and response prevention: I am a huge believer in the ideas behind exposure and response prevention therapy. In a sense all of recovery is an exercise is exposure and response prevention. Do something scary. Don’t do anything to alleviate the ensuing anxiety. See that the world does not end. Repeat. And eventually the scary thing won’t be so scary.

You are stronger than you think: Another recovery mantra. When I lost faith in myself, when I honestly didn’t believe I would survive another moment/day, I told myself that just because I didn’t think I could do it didn’t mean that I actually couldn’t do it. You are stronger than you think. You can survive this even though you are sure that you cannot. Your thoughts and feelings do not dictate reality.

Zero tolerance for ED: If I let myself think that cutting, purging, or skipping a meal was ok “just this once” I knew it would quickly spiral out of control so instead I told myself that even one purge/cut/skipped meal was a one way ticket back to the psych ward – something I definitely didn’t want!

Big Changes

There are big things happening! I don’t post much about my personal life but I have two pieces of very exciting news that I want to share with you all.

I found out about three weeks ago that I got into the University of Washington. The anxiety about school starting was INTENSE. It was a very PTSD-like reaction. The past three times I have been in school have been disastrous. I was very very sick and had no business being in college. Thinking about going back to school immediately brought on an overwhelming and very physical stress reaction – I literally spent several days feeling like I couldn’t breathe and was going to throw up. NOT AWESOME. 

But! Classes started on Monday and I have survived my first week and I feel…calm. I dealt with all the minor (and not so minor) hiccups involved in picking classes and finding my way around campus. I took my first quiz and turned in my first written assignment. I ate all my meals with no problems. I only had a little trouble getting dressed in the mornings. Even though I knew intellectually that my experience at school would be different this time around because EVERYTHING is different now but knowing it and believing it are two separate things. I believe it now. And it feels fucking amazing.

The second piece of news is that two weeks ago, three weeks after our five year anniversary, my boyfriend and I got engaged. Nothing demonstrates the awesome power of recovery more than my relationship with J. He has been there for me from very sick to tentative recovery through relapse and out the other side. My ED destroyed our relationship and we broke up for a while but J’s support never wavered. Our relationship now is amazing. It is truly a partnership between equals. We support each other, we can talk about everything, we have so much fun together. And we are both so grateful for our happiness and health because we have seen what life is like without them.

 

 

Body Dysmorphia is a Bitch

A quick anecdote to illustrate the evil, sneaky, manipulative, irrational, ridiculousness that is body dysmorphia:

There is a woman. Let’s call her M. I see M almost every day. For months I dreaded being around her because I was convinced she was sooooo much thinner than I am and it made me feel like a pregnant hippo in comparison and inevitably left me full of intense body loathing that was quite capable of ruining my entire day. A while back I happened to discover that M and I actually wear the same size jeans. I felt a little better about myself. For all of five minutes. And then, instead of my perception of myself changing at all to reflect the indisputable proof that I, in fact, do not resemble a pregnant hippo, my perception of M’s body started to change. I found myself looking at her and thinking that she wasn’t as thin as I had previously thought and that she actually didn’t really look that good and that she had clearly gained a huge amount of weight overnight and I actually started completely panicking about being the same size as her.

Sometimes I feel completely insane.

 

Bulimia

I have been trying to write a post summarizing my thought on bulimia since I started this blog. Suffice it to say, coherent and concise are not the words I would use to describe my attempt thus far. So I am going to try again and post whatever comes out. My apologies if this dissolves into epic rant territory.

*I should note that I am not addressing common misconceptions about bulimia or eating disorders in general (eg they stem from controlling mothers, etc). This post is really about the misconceptions I still see within the well educated community.

1. Bulimia is less serious than anorexia.

I’ve heard (read) this statement and variation on the theme from far too many clinicians to count, including some who I greatly respect. I assume that what they mean is that bulimia has a lower mortality rate than anorexia. Putting aside the fact that I don’t think we have very good stats on  mortality rates for eating disorders, I wasn’t aware that mortality rates were the be all end all definition of severity in mental illness. What about the people who don’t die but who suffer for decades in the hell that is life with an ED?

But lets say for arguments sake that anorexia is more serious than bulimia, however you want to define severity. Does telling parents and sufferers that do any good? I think not. I think it actually has the potential to do great harm. If a parent find out their child is bulimic, looks at a website/reads a book/talks to a clinician, and one of the first things they hear is “at least he/she is not anorexic” (or some comment to that effect), is that parent better educated about about the illness? No. Are they more likely to aggressively pursue treatment for their child? No. What that parent needed to hear/read is that bulimia is serious, that people do die from it, that they need to get their child into treatment. And of course that they did not cause it and their child did not choose it.

2. Bulimia is culture-bound while anorexia is a biological illness.

This bothers me for a bunch of reasons. First off, I’m not sure we have conclusive evidence that bulimia is only found in western cultures/first world countries. Maybe researchers have not found instances of bulimia in other cultures because bulimia is so much easier for the sufferer to hide. The physical side effects of bulimia are not usually visible (ie severe weigh loss) like they are with anorexia. And bulimics are not likely to voluntarily identify themselves since they usually feel a huge amount of shame about their behaviors.

Secondly people tend to use the phrase “culture-bound” to mean “a reaction to a culture that overvalues thinness”. Just as anorexia is not “about” being thin, neither is bulimia. Anorexia is not a diet gone too far and bulimia is not someone wanting to eat whatever they want and not gain weight. If bulimia is in fact culture-bound, I think it is more likely that that has to do with the amounts and types of foods that are readily available in different cultures.

3. Refeeding is for anorexia. Bulimics are already at normal or above normal weights.

Laura blogged about this here.

What the fuck is a “normal” weight? Its true that bulimics are not usually visibly underweight. But I would advise anyone treating a bulimic patient to plot their growth chart the same way you should to determine the target weight of an anorexic. Often bulimics are under their own individual ideal weight range. If that is the case then weight gain is just as necessary as it is for an anorexic.

Refeeding is not just about weight gain. It is about restoring a nutritional balance and normalizing eating patterns. Even is the bulimic patient is not underweight (on the charts or for their individual body) I guarantee you that they are not eating a balanced, sufficient diet outside of their binge/purge episodes. Restriction and poor nutrition keep them trapped in the binge/purge cycle. They need 3 meals and 3 snacks with sufficient calories and high percentages of proteins and fats. They probably need a parents (or someone else) to select their foods, determine portions, and supervise eating for quite a while before they will be able to do it on their own. And of course they need to be monitored for purging (not just for an hour either as bulimics digestive systems kind of shut down allowing them to purge long after eating). In fact they probably need to be monitored just about all the damn time. It will take a significant amount of time of eating proper amounts and nutrition before the urge to binge will subside.

4. Bulimics are ashamed of their illness and want to stop binging and purging and will cooperate with FBT style interventions.

So many things here that drive me crazy!

Are bulimics ashamed of binging and purging? Usually, yes. God knows I was. But when exactly was the last time shame was a good basis for open communication and cooperation? I would hazard a guess and say never. Is someone who is deeply, deeply ashamed of binging and purging really going to keep a detailed record of their behaviors and sit down with parents and/or treatment providers to discuss it which is what Locke and Legrang suggest in their manual? [On a side not, I also think that constantly noting how ashamed bulimics feel of their behavior in all the literature just serves to reinforce for the patient that their behavior is in fact shameful.]

Secondly, people misguidedly equate feeling ashamed of their behaviors with actively wanting to stop the behaviors. In my case at least, I was definitely ashamed and disgusted with myself for binging and purging but that in no way translated into wanting to stop. I told my friends and treatment providers that I wanted to stop because admitting that I in anyway even remotely “enjoyed” binging and purging added a whole other level of humiliation. I mean who likes eating until their stomach is so distended that they can’t breathe and then vomiting it all back up? Doing it meant I was messed up but liking it probably meant that I was beyond redemption. So I told everyone I wanted to stop and played along with writing out plans to prevent behaviors and making listing of coping strategies to use when I wanted to binge. But the whole time I was just counting the minutes until I could leave and go binge and purge.

I put ‘enjoy’ in quotes above because its not exactly that I derived pleasure from binging and purging as it is that binging and purging was the only thing that afforded me any relief from the crippling anxiety and sheer panic that I felt the rest of the time. And that’s why I think expecting bulimic patients to be compliant with interventions that prevent them from binging and purging is not only unrealistic but also downright cruel. I cannot accurately describe what “needing” to binge/purge felt like but it was pretty fucking horrendous and god help you if you were trying to stand in my way. We don’t expect anorexic patients to be compliant because we understand the amount of anxiety that eating provokes. Well for bulimics being required to eat normal amounts and not purge provokes that same level of intense anxiety.

Yes, some bulimics are going to be cooperative and compliant with treatment. But some anorexics are too. Presenting that as the norm is not only inaccurate but I think its downright harmful. If parents start the process of refeeding/nutritional restoration/symptom interruption expecting compliance they are much less likely to be successful.

Okay I think I should wrap this up although there is quite a bit more I could say on the topic. I hope I don’t come across as claiming to know more than all the experts. Its just that what the experts say does not mesh with my experience of bulimia at all and I have to assume that my experience was not all that unique.

Lightbulb moment!

This article completely changed the way I thought about self-harm. I spent years in therapy trying to figure out “why” I cut and coming up with all sorts of quite impressive, total bullshit narratives about it much like I did with my eating disorder. All I really knew was that it made me feel better and that I felt like I couldn’t stop (much like my eating disorder). Reading about how physical pain actually does relieve emotional distress was such an aha! moment. It was both hugely validating of my experience and allowed me to stop trying to find any deeper meaning (much like learning about the biology of EDs).

I’m posting this today because this month marks four (!) years since the last time I cut myself. I continued to struggling with scratching and rubbing my skin raw for quite a while afterwards and still struggle with some skin picking and hair pulling. But four(!) years is definitely something to celebrate.

Awareness

So today is the start of Eating Disorder Awareness Week. I am not, nor have I been in past years, involved in EDAW in any way. In fact, I have always been a little put off by the whole thing. And here’s why: awareness, in and of itself, is not what we need. In this day and age who isn’t aware of eating disorders? The media loves them. Talk shows and reality tv love them. Everyone thinks they know all about eating disorders. The problem, of course, is that they don’t actually know anything at all and it seems to me that EDAW is, if anything, making it worse. All the “love your body events” (both EDAW events here in Seattle are body image focused, Renfrew’s Barefaced and Beautiful campaign) will only surve to further confuse people while simultaneously trivializing a deadly illness. Even the backlash against the  love your body focus gets it wrong.

EDAW’s slogan in the UK, which took place last week, was “break the silence”. Katie had a fabulous post about that. The first time I asked for help with my eating disorder I was 20 and had been struggling for five years. I looked healthy enough at the time having gained back most of the weight I had lost the year before but was rapidly slipping back into severe restriction. The counselor at the McGill health center told me that since “I wasn’t so skinny it was dangerous” we didn’t have to talk about the ED but that she would be happy to talk with my about my anxiety and depression. I left and never went back and promptly lost all the weight I had regained, went back to overexercising and abusing laxatives, and started binging and purging. Breaking my silence did me no good at all.

EDAW’s slogan here in the states is “everbody knows somebody”. If I thought it would do anything towards combatting the misinformation about eating disorders, I would tell everyone I know that I am a sufferer. But, again, I don’t think that would do any good.

We don’t need increased awareness. We need education. We need facts and science and good information. We need people to be hearing the message that eating disorders are biologically based brain disorders that families do not cause and sufferers do not choose. They are not about bad body image. They are not about family dysfunction or bad parenting. They are not about sexual abuse. They are not about control. They are not ABOUT anything.

And I fail to see how EDAW is helping us accomplish that.

Looking On the Bright Side

I tend to get really down on myself when I am struggling. I know recovery is difficult and a lengthy process and not a straight line, etc. And I know I’ve made incredible progress over the last two years and that I should be proud of that. I am proud of that. But I get so frustrated that I am not done yet. And of course beating myself up for having a hard time is very probably that most couter-productive thing ever. So I am hereby renewing my efforts to focus on the positive way I am handling things rather than the negative things that are happening.

Case in point: this weekend I had a panic attack. I used to have them multiple times a day but now they are pretty rare. We were watching the Super Bowl with some of my boyfriends friends and although these are people I like I am not totally comfortable with all of them and I’m not sure all of them like me. The bar was loud. We had come directly from another social engagement. I was wearing clothing that made me hyperfocused on my body. And so my anxiety overwhelmed me. I went outside at half time and stood on the street corner and tried to get a grip. And then I started beating myself up for not being able to ‘just be normal’ which didn’t help my anxiety level and pretty soon I was crying and hyperventilating and shivering and my vision was going all funny and I was sure everyone walking by was thinking what a freak I was but I couldn’t think straight enough to walk somewhere more private.

But I was able to text my boyfriend that I needed him to come outside and I was able to let him hug me and model my breathing after his. We walked around the block until I had stopped crying and then we talked about what was going on. I was able to realize that I had not had enough to eat at breakfast or lunch and being hungry definitely lowers my panic threshold. I was able to find a snack at the corner store even though they didn’t have exactly what I was looking for. We walked back to bar and watched the rest of the game.

In the past I was not able to ask for help or accept help when it was offered. I was not able to talk myself through a breathing exercise or self-soothe in any way. I would not have been able to realize that I needed a snack, pick something out, and eat it. I probably would have left the group, gone home, and cut myself. In the past I probably would have been quite drunk because I would have tried to dull my anxiety with alcohol.

So does it suck that I’m not ‘done’ with recovery? Yes it absolutely does. But where I am now is a far cry from where I’ve been and it gives me hope that in another couple of years I will be even farther along.

ps. I don’t think you are ever actually “done” with recovery. Recovery is a verb not a destination. But that’s another post.

 

 

Weight

Trigger warning: weight and bmi numbers

My slip into restricting a couple of months ago was triggered by seeing my weight for the first time in nearly a year. It was ten pounds higher than it had been the year before. And I was horrified. Mortified. Humiliated. Furious. And really really really confused. It had been two years since I stopped binging and purging and I had gained 30lbs – 20 in my first year of recovery and another 10 in my second year of recovery. And I was really fucking pissed off. Even the first twenty was seven more than the BMI 20 I had set as a target and five more than the target my nutritionist suggested. So that was hard enough. But to have gained even more? I was devastated. I thought I must be over-eating. That was the only way this could have happened right? So I cut back. But cutting back meant not eating when I was hungry or stopping before I was full and before I knew it I was completely overwhelmed with ED thoughts.

I managed to get back on track and ED has quieted down significantly (although still louder than before I slipped). But my feelings about my weight haven’t really changed. I am mortified, pissed off, confused. If I haven’t been overeating why oh why did my weight go up (I should mention that my weight had been stable at 10lbs less than my current weight for about eight months before I stopped weighing myself)? If I am eating when I am hungry, stopping when I am full, and leading a fairly active lifestyle (chasing babies and puppies but no formal exercise other than weekly soccer game) and this is where my weight has landed, does that mean this is where my body wants to be? In my most rational moments I can see that that might make sense. But most of the time I feel like that can’t be right and I clearly did recovery wrong to get to this weight.

I stopped binging and purging in october 2009 and for a long time I pinpointed that as my recovery start date so it seemed ridiculous for my weight not to have stabilized a year later. But if I am honest, I did not stop restricting and overexercising for many months after that and I did not really relax into “normal” eating until close to a year later. So maybe my body wasn’t done restoring weight at current weight minus ten lbs. Maybe it just hung out there for a while doing internal repairs and dealing with a raging metabolism and I (and my nutritionist) just assumed it was done.

See when I started gaining weight I set myself a target of BMI 20 because I read somewhere that that was the healthy minimum. It seemed so pro-recovery at the time because in previous recovery attempts I had set my target even lower. And when I read genetic set points I looked at my mom and my sisters and my mom’s sisters and they are all really thin people so the helathy minimum seemed like enough. Of course, I conveniently left out that part where my mom and one of her sisters had (have) diagnosable EDs and that my older sister has disordered eating and my younger sister is, well, younger and also a serious athlete. So maybe not the best points of reference.

Gaining to BMI 21.something was really hard but eventually I did come to accept it. It was like I all of a sudden remembered what the word minimum meant. Besides I had reached a BMI 20 in my previous recovery attempt and had relapsed so maybe that extra little cushion wasn’t such a bad idea. My BDD raged about my appearance but mentally I could handle the numbers. Plus I thought I was done gaining weight and there was a comfort in that – in just getting used to that weight as opposed to panicking about getting even bigger.

And then – about three months ago – I got on that scale and discovered that actually I had gained ten more pounds putting me at a BMI of 23 (holy crap putting that out there in the world is really really scary – no one but me knows my weight – trying not to panic – deep breathes). And OMG that meant that I was closer to an overweight BMI than an underweight BMI and clearly that was NOT OKAY (even though I know BMI is total crap and even if it wasn’t being slightly above the middle of the healthy range should not be a crisis).

So I am trying to come to terms with it. And not doing a great job. I thought about getting my childhood growth charts because I thought if I had proof that this was where my body wanted to be it would be easier. I scratched that idea after my boyfriend asked me what I would do if my charts indicated something else. He said that I should stop trying to “justify” weighing this much. That it is fundamentally OK. That I am physically healthy (mostly) and mentally healthy (mostly) and that if I need justification that should be good enough. Have I mentioned that I love this guy?

The idea that I had gained more than I needed to to be physically healthy was really bothering me but what good would it have been to be at a lower but physically healthy weight if I could not maintain it because my mind was still sick? And maybe I did overeat somewhat at some point to get to this weight (I went through a period of being very scared of being hungry because I was so terrified of relapsing again). But I am not overeating now. Or maybe my set point is higher that it would have been if my ED had not put my body through years of abuse. Who knows. Does it even matter how I got here?

Could I be physically healthy at a lower weight? Yes. Could I be mentally healthy at a lower weight? Maybe. Can I stay physically and mentally healthy if I put myself into a negative energy balance to reduce my weight? Absolutely not.

So as much as I am struggling with accepting my weight and BMI numbers, and as much as I hate my physical appearance right now, I am determined to tolerate them. Because you know what? I hate ED more.