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.