The Double-Edged Sword of Stigma-Reduction

I am taking an abnormal psychology class this quarter and its pretty terrible which makes me angry and frustrated and sad (and we haven’t even gotten to eating disorders yet!). A large portion of the curriculum seems to be dedicated to reducing stigma around mental illness. Which is great (although not really what I think an abnormal psych class should focus on). Its the way the professor is going about it that is getting me all stabby. Like many other mental illness awareness/stigma-reduction campaigns the focal point seems to be the idea that mental illness is not that different from normal emotional experiences  and therefore that people who suffer from mental illness are just like everyone else and that everyone can understand what having a mental illness is like.


Mental illness is not just an extreme version of normal emotion and behavior. Yes, sometimes the outwardly visible symptoms of a mental illness can appear as exaggerated versions of normal behaviors but the emotional experience of the sufferer cannot be understood in those terms. Eating disorders may look like extreme dieting behavior but let me assure you having an eating disorder IS NOT in any way like the experience of dieting. You cannot take the experience of a non-eating disordered person who diets and has “normal” body image issues and multiply it by any order of magnitude and get the experience of an eating disorder. Depression is not just feeling extra sad. Anxiety disorders are not just feeling extra worried. I believe this holds true for all mental illnesses.

Now the issues of whether people with mental illnesses are just like everyone else and can lead completely normal and successful lives is a little more nuanced. I absolutely believe that with good treatment most people can go into remission from their mental illness. I like to think that I am living proof of that. My life looks – and for the most part is – very normal. And yet for many years I was completely unable to function in any way that resembled normality – unable to hold down a job, stay in school, have relationships, feed myself properly, at times unable to even get out of bed and get dressed. And for some people with mental illness, their lives may never get back to normal. When we harp on and on about the idea that people with mental illness can be totally “normal”, what are we implying about the mentally ill people who can’t? That if they just tried harder they could overcome their illness! and be normal!? To me it just reeks of victim-blaming. Because, honestly, the difference between me and the homeless, schizophrenic man on the street corner is not that big. My parents were willing and able to pay for airplane tickets home from South America and pay rent on apartments when I couldn’t. They did a lot of things wrong but they never told me I couldn’t come home. That’s all. That is the difference. There are moments I think back on when, without that financial support, without a home to come back to when I had nowhere else to go, I would have ended up on the streets, on drugs, psychotically depressed, doing god knows what. The people for whom that becomes the reality do not deserve to be thrown under the bus in the name of making the general public feel more comfortable with mental illness. These people do not deserve to have the burden of the stigma thrown entirely on their shoulders for the benefit of those of us lucky enough to come out the other side and be able to pass as “normal”.

So, no, I do not believe that people who have not experienced mental illness can truly understand what it is like. For some reason that is not entirely clear to me, this seems to be a belief that offends a lot of people. I am not saying they have never experienced anything painful or hard. I am not saying that they cannot learn about mental illness and effectively support people who do suffer. I am not saying that they cannot become wonderful, compassionate clinicians. I am not saying that loving someone with a mental illness is not a challenging and painful experience in and of itself. What I am saying is that YOU DO NOT KNOW WHAT IT IS LIKE. And that’s ok.

We do not talk about other illnesses in this way. People do not claim to understand what it is like to have cancer because something bad happened to them once. We do not conceptualize cancer as a really really exaggerated version of the flu. We do not think that our ability to treat people with physical illnesses with compassion is tied to our ability to relate to their experience. Treating physical illness or supporting someone who is ill does not require us to KNOW exactly what they are going through. We need to stop doing this with mental illness. We need to encourage an educated and compassionate view of mental illness that is not relient upon this idea that its “not that different”.



I would like to announce to the entire world (or, you know, the two people who read this blog) that I successfully bought a swimsuit. Not only did I buy one but I think I will be willing to wear it in public and I actually kinda sorta even think I look cute in it. Guys, I haven’t worn a swimsuit in six years and an attempt to buy one last year ended in an epic meltdown. So this is kind of a big deal. My body dysmorphia still gets the better of me at times (ahem, wedding dress fitting) but I am fighting back and am finally making some progress. I’m kind of awesome. Just sayin’.

Also, stay tuned for a series of blog posts on communicating about eating disorders.

2012 Year in Review and Goals for 2013

Last year I made an ambitious list of new year’s resolutions. Let’s see how I did shall we?

1. Go to bed earlier. Didn’t do such a great job with that. Definitely something to keep working on.

2. Apply to school (and get in). Success! I applied to University of Washington and started full time this summer. I have completed two quarters. Its been a bit of a bumpy ride but I guess that was to be expected.

3. Drink less beer. I wasn’t drinking a lot to begin with but I do think I’ve cut down a bit. I’m actually not sure why I made this resolution last year?

4. Watch less bad tv. Hmm total fail. I will watch pretty much anything (except reality shows).

5. Read more novels. See more live music. Go to the movies more often. I have been reading a lot more but completely failed on the other two.

6. Cook a wider variety of foods. Nope. Laziness continues to win out on this front.

7. Tell my boyfriend (J) I love him more often. I actually think I’ve gotten a little better at this. I still don’t initiate ‘I love you’s’ very often but I do feel more comfortable saying it.

8. Keep the apartment tidier. Ha! If anything this has gotten worse.

9. Make some friends. I wouldn’t say I’ve made a lot of close friends in the past year but I have widened my network of people I am friendly with. I joined a new soccer team, met people through volunteer work, and even occasionally talk to a classmate.

10. Do a better job of keeping in touch with my friends who are far away. Yeah I suck at this. I saw my Boston friends in September but haven’t really talked to many of them since. I did get to see a friend in NYC who I hadn’t seen in six years and another friend in DC who I hadn’t seen in 13 years.

11. Start volunteering at the Seattle Animal Shelter. Check. Took a couple of false starts (new social situations make me pretty anxious) but I did it and its been really fun and rewarding.

12. Find a way to practice my Spanish before it completely disappears. Nope. I think it has officially disappeared from my brain.

So basically I sucked at following through on last year’s resolutions. Still I would say 2012 was a success over all. Starting school again was really hard and fall semester was a bit of a disaster but I didn’t give up and I didn’t freak out too much over my less than perfect grades. I went to the second annual FEAST conference in DC and had a wonderful time. Oh! And I got engaged this summer and bought a beautiful wedding dress without too much body anxiety and had a mostly good visit with my fiance’s family over Christmas.

The other resolution I made for 2012 was to be more proactive about tackling my body dysmorphia. In general my recovery is very solid. No major lapses into restricting in 2012 although I still hear my ED voice fairly often. Most of the time it is just background noise that I can ignore with any difficulty. Sometimes its a bit louder but not overwhelming. No cutting or purging either although I sometimes still feel those urges too. Judging how I am doing with my body dysmorphia is tough because it changes wildly from day to day. I bought a lot of new more adult looking clothing for school and I think that was helpful for my body image. Wearing tighter jeans and closer fitting tops was really really hard but forced me to look at and deal with my body in a way that I had been avoiding. And sometimes I actually thought I looked ok. And then other times my body dysmorphia still rears its ugly head and makes my life pretty difficult. Just a couple of days ago I saw some photos of myself from the holidays and promptly disolved into a hysterical mess and decided I should never be allowed to leave the house looking so disgusting. Sigh.

So goals for 2013:

1. Keep on pushing through the anxiety related to school. Be better about actually going to class and keeping up with the work but cut myself some slack when the anxiety is overwhelming.

2. Survive wedding planning and get married!

3. Keep working on my body dysmorphia. Resist the urge to return to wearing baggy jeans and my boyfriends t-shirts. Start going to yoga which I find helpful in feeling grounded in my body. Keep playing soccer and jogging and appreciate how good it feels to be strong and healthy. Be patient with myself when I am struggling.

4. Clean the damn house.


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.

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.