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!