Fighting stigma by embracing the diversity of mental illness

“Have you ever been depressed? I mean really depressed??” A friend of mine asked me this back in the spring of 2010, just a few weeks after I returned from a 3-week involuntary stint at the state psych ward after a suicide attempt. And yes, she was aware of this. I remember thinking, “Is she serious?? Does she think I tried to kill myself because I’m happy?” Of course I had been depressed, really depressed before, and in fact I considered myself a pretty depressed person for most of the time that I knew this girl (who I met in treatment for my eating disorder). So why was she asking what seemed to me like such an obvious question? I soon realized that what she knew as “depression” was very different from what she observed in me. To her depression was staying in bed all day, going for days or even weeks without showering or brushing her teeth, skipping classes and getting fired from jobs due to excessive absences.


My depression has taken different forms over the years, but it never manifested in me avoiding showers or basic hygiene. Even when I felt like complete shit I would still try to fix my hair and slap on some makeup before facing the world. I wouldn’t sleep all day but would instead numb myself out with my eating disorder and avoid reality that way. I was often able to go to school and/or hold down part-time jobs without my depression interfering much from an outsider’s perspective. I showed up and did my work but only because not doing so would have made me feel a million times worse about myself. I still felt no real connection to my life though, even the things I claimed to be interested in. I was just filling the time before I could figure out a way to end things. This is not to say that I was constantly suicidal. However, for many years when things were especially intolerable with my eating disorder, I could not imagine living into my older adult years like that. I would set deadlines like “if my eating disorder (or any random accident/disease) doesn’t kill me by the time I’m (30, 35, 40, etc.), then I’ll have to do it myself.” I was just going through the motions of everything I did and the concept of making plans for the future was completely foreign to me. Sure, some days I told people I wanted to go to grad school, become a clinical psychologist, move to Seattle (haha, my childhood dream home– I loved rain!), but I was rarely serious about taking steps to make those things happen. If I was going to grow up to be just as controlled by my eating disorder, I did not want to live to see those years.


So yes, friend, I’d say I had been depressed, really depressed before, just like you in bed with your unbrushed teeth.


I realize it can be hard to imagine people who have the same illness as you having such wildly different experiences. A major therapy pet peeve of mine is when therapists make assumptions about you based on either their own experiences or those of their other clients. This can especially be a problem with therapists who have personal experience in whatever disorder or illness they’re treating. One of my most frustrating therapy memories is when a therapist told me she “didn’t believe” that I really experienced a certain pattern of behaviors in the way that I did (I don’t mean to be cryptic, it’s just too complicated to explain briefly) because she had “never, in all her 15 years of treating eating disorders” heard of someone experiencing it in that way. At first I thought she was joking. What I was explaining was hardly that unique of an experience among people with EDs, and I could probably name 8 people off the top of my head who I knew had similar experiences. But she insisted she was serious, she literally did not believe me and told me I was wrong and I must have really experienced it in the way she knew to be most common based on her 15 years of treating eating disorders. Well then! That was the last time I ever paid her (or anyone) to tell me my own experiences were wrong because they didn’t fit into some neat little mold.


Eating disorders in particular are very heterogenous in the ways they present. My best friend (who also has an ED) and I will often marvel about this together. How incredible that the foods some of us find the scariest are considered the safest for others? Some people feel compelled to constantly be moving and burning calories while others are perfectly content to sit in one place all day as long as they don’t go above their allotted calorie limit for the day. Alcohol = empty calories –> completely off limits. Or… maybe alcohol makes up the majority of your intake because you’ve somehow deemed it the safest. Some people with anorexia may not even have a distorted body image. Some people are obsessed with the scale; others fear and avoid it completely. WHAT IS THIS ABSURDITY?!?


What I’m about to write is something I hesitate to share because I usually prefer not to discuss some of the more “shameful” parts of my eating disorder, but I figured that’s kind of the point of this blog– to fight the stigma and show people there should be nothing “shameful” about having a mental illness.


My eating disorder began and stayed as restrictive anorexia for most of my adolescence but when I was 19 I picked up several new “behaviors” that put me in bulimic territory. In my second semester of college I had reached my highest ever weight, which was technically normal/healthy but still quite large for me, as I had been underweight ever since the start of my eating disorder. I can honestly say this was mostly a result of me trying hard to be more socially open and less rigid with food in college. I wanted so badly to be someone other than that shy awkward kid I was all through high school. I was probably more “normal” about food in those few short months than I ever was or have been since. That soon ended though, once I stopped enjoying myself long enough to realize I hated what I had become, physically. People started commenting about how “great” I was looking and how I was “finally starting to look my age.” While I’m sure they meant well, I, being the highly sensitive weirdo that I am, did not take any of it positively. I always wanted to avoid drawing any attention to my body, so this was kind of my worst nightmare. All I heard was, “You gave in and got fat. You failed. Fix it.” It was around this time that I started experimenting with purging… and then soon the binge/purging started. Fast. Seemingly out of nowhere. It was a very scary time.


I went back to see my old doctor who had seen me all through middle and high school. I remember being humiliated for her to see me weighing XX lbs more than she had last seen me. To my surprise she didn’t comment on my weight gain, but she did have what I perceived to be a rather flippant attitude towards my new “problem.” Like, “Oh, bulimia! The less serious eating disorder! We can handle this! We’ll just administer a few doses of trusty old CBT and you’ll be good to go!” This was back when eating disorders were still often conceptualized in very dichotomous ways. You either restricted your intake and were anorexic or you binged/purged and were therefore bulimic. Bulimics were normal or overweight because purging was not an effective means of weight loss. Right? Except… not quite. Please, eating disorder therapists and doctors of the world who are probably not reading this– do not tell your clients this. Not only is it not true, but it can be very very damaging when your clients decide they need to prove you wrong. I think by now most specialists in the field are well aware that it’s very possible to binge/purge quite frequently and intensely while maintaining very low weights. That’s why the diagnosis of anorexia-binge/purge type exists. So please, please, don’t be one of those professionals who quotes some made up statistic like “you always absorb at least half of the calories you try to purge” because it will not scare people into stopping the behavior but it will likely drive them to prove you wrong by engaging in the very dangerous purging methods that do indeed “work.”


In case that last paragraph didn’t give it away, I was not all better after a few trusty sessions of CBT, and my descent into these new behaviors was what I consider to be the the darkest turning point in my illness that made recovery seem all the more impossible for a very long time. In talking with fellow long-time sufferers, I have found this is often a taboo subject. Diagnostic crossover in eating disorders is extremely common, especially in those initially diagnosed with anorexia- restricting type. For my fellow data nerds out there– Eddy et al. (2008) followed 216 patients for an average of 7 years and found that of those initially diagnosed with anorexia- restricting type, 58% crossed over at some point into either anorexia- b/p type or bulimia. It can also go the other way– of those initially diagnosed with anorexia-b/p type, 44% crossed back into anorexia- restricting type. The only crossover that wasn’t nearly as common was from bulimia to anorexia, with only 14% crossing over into either subtype. I have theories as to why that’s the case but as I like to say– that’s a blog for another day!


The stigma is rampant– not just among the general public but also among professionals and even sufferers themselves. No one wants to talk about their symptoms when they don’t fit into the pretty little box for that particular disorder. Depression isn’t always sleeping for days and anorexia isn’t always lettuce and rice cakes. We don’t have to (and probably shouldn’t) share all of the graphic details of our struggles, but we can choose to fight the stigma by at least touching on some of the less familiar or glamorous aspects.

Recklessly Residential: The Truth Behind that Picturesque Website

Since Monday, this article has been floating around the interwebz causing much buzz in the eating disorder world. It’s hardly news to most of us; similar articles have been popping up for the past year or so. Since the early 2000s, the number of residential treatment centers devoted to treating eating disorders has increased from 22 to more than 75. These days it’s pretty easy for those affected to find a specialized center within reasonable travel distance. Actually getting into these places is much trickier, however, as insurance companies are far less likely to offer coverage for residential treatment versus more traditional inpatient or hospital-based treatment. If you’re wondering what the difference is between a “residential” and an “inpatient” center, the answer is, it varies greatly. Inpatient facilities are generally shorter-term programs aimed at medical and psychiatric stabilization, whereas residential centers cater to longer-term treatment and usually incorporate more therapy and “real-world” practice. Or so they say. I have found that sometimes the distinction between inpatient and residential is quite subtle– either in “residential” centers that offer little more than your typical inpatient unit or in “inpatient” units that operate more like longer term residential centers.

Why is this even important? Well, because over the years inpatient programs have gotten a pretty bad name, whereas residential centers are often hailed as the mecca of recovery. “If only I could afford to go to [insert name of popular residential center], then I could finally get better.” Or (yes, this really happens), “Please donate to my GoFundMe account to help me go to [insert name of most expensive residential center]. My doctors told me I need to go here and only here in order to get better.”

I am where I am today because of the changes I decided to make after living with a serious eating disorder for most of my life. I spent much of my youth and young adulthood bouncing in and out of various hospitals, inpatient units, and residential centers trying to get better. Nothing seemed to help. I was no better off after leaving the fancy residential center my parents paid out of pocket for than I was leaving the hospital where I received free treatment in exchange for my participation in research. Talking to other long-time sufferers like me, I find this is often the case. We have long histories of admissions that are now hardly distinguishable from each other, despite how different they seemed at the time. A lot of us do end up getting “better” (not necessarily “recovered”) but we cannot attribute our success to any one program.

I consider my turning point to be around the time of my last inpatient admission three and a half years ago, although it would be false to say that I got better as a result of going there, it was merely the setting for many personal changes I initiated during that time. This place was far from the picture-perfect center you see in the shiny facility brochures (or these days, the websites). There was no equine therapy, lush green landscapes, or private bedrooms with views of the beach. This was a makeshift wing of a psychiatric hospital surrounded by barbed wire fencing. We had to walk outside to get to the middle school style “cafeteria” and then take our food back to the smelly hospital gym to eat (yes, they thought it would be cool to have a bunch of exercise-restricted ED patients eat in a gym). This was no Monte Nido, but it was what my insurance covered at the time. And believe it or not, I had a better experience at this barbed-wire joint than I had at many of the much nicer cushy facilities I stayed at over the years. It was here that I first started to believe I could have a life that consisted of more than my eating disorder.

Let’s compare this to what I consider to be the least helpful (and in many ways, harmful) place I went back in 2006. I’m talking about Mirasol, that beautiful house in Tucson, AZ that should never have been licensed to treat eating disorders. Here are just a few of the atrocities I encountered while there:

  • They prided themselves in employing only staff who had recovered from their own eating disorders or addictions. This can be a good thing, when staff are actually recovered and mature enough to handle working with such a close-to-home population. Many staff were not. I still remember walking into my first group and hearing a man describe his most recent (as in, a couple weeks earlier) very graphic suicide attempt. It was almost like a step-by-step how-to guide. I assumed he was a client, but no– clinical director.
  • There were a variety of alternative “modalities” we were required to participate in. Some were kind of cool and maybe even helpful (like the biofeedback training for anxiety) but most were a colossal waste of time (e.g., tribal drumming group). Some were downright inappropriate or harmful to some. I tried to get out of the required acupuncture and new-age “polarity” because I hate being touched by weird people, especially while in the process of gaining weight and hating my body tenfold. They told me I was “hiding behind my eating disorder.” No… I just don’t need people rubbing me or sticking needles in my face.
  • If you struggled with binge/purging behaviors, they had you keep boxes of your most triggering foods in your bedroom at night (“exposure therapy”). And because they didn’t believe in locking bathrooms, this resulted in the all-too-common awkward group binge/purging sessions. Where was staff? Oh, probably relaxing with Margaritas by the pool (seriously though).
  • They took us to the gym several times a week– all of us, even those of us who were significantly underweight and would have been on bed-rest or at least restricted movement at any other place. The intention was to teach us about “moderate/healthy exercise,” which was a noble goal but absolutely not what occurred. Instead, most of us felt pressure to out-do one another and things got ugly fast. I guess that’s what happens when you take a bunch of eating disordered clients to a gym and leave them unattended for 4 hours. Who would have thought?

No, I wasn’t being held there against my will and I could have left well before I did. Hindsight is 20/20 though and at the time I wanted so badly to believe this stuff could help me. The facility came highly recommended from my outpatient therapist who thought I needed something different from your run-of-the-mill hospital ED unit that hadn’t helped me in the past. She helped get me a 50% “scholarship” but my parents still put down a pretty penny to send me there. And for what? I can’t say I benefitted at all from that place. I mean, I learned what a javelina is and how to make organic peanut butter balls but that’s about it.

People often complain about insurance and how it’s so hard to get coverage for residential treatment. Well, I wonder why? Maybe because the insurance companies see how most of these places do not bring about lasting change, and instead breed revolving door patients. Don’t get me wrong, I’ve had my own battles with insurance and have seen some very sick people denied treatment they desperately needed. The problem I have is when people think these expensive residential centers in particular are the answer, as opposed to the less fancy inpatient hospital-based programs insurance companies are more likely to cover.

When I first moved to Los Angeles I had a therapist try to convince me that in order to get better I absolutely had to go to Monte Nido (for those not aware, Monte Nido is a residential facility in Malibu that runs about $1,500/day and does not take most insurance). This therapist used to work at Monte Nido and claimed it was the very very best in eating disorder treatment, and even though I had been to 9 different places already (many of which also claimed to be the “very very best”), Monte Nido would be different. Well, seeing as I was a poor unemployed grad student living off of student loans with state health insurance, that wasn’t happening. And you know what? I’m glad it didn’t happen. Even though I struggled pretty damn hard over the next couple years I doubt I would have been any better off had I gone there. Also, that place always strikes me as mildly cult-like and I value my independence.

Just for fun, I took a look at the “Trusted Outcomes” page of the Monte Nido website. This is where they try to tell you how awesome all their former clients are doing. Most residential centers present something like this, and to be honest, Monte Nido’s is far from the worst I’ve seen (in terms of flawed research methods). That said, it’s still pretty bad. A few things that popped out right away:

  • The study they cite is 10-20 years old (data collected from 1996 – 2006). While I have never been to Monte Nido myself, I have heard from numerous sources that it has changed dramatically over the past 5-10 years. What started out as a small intimate center with two sites in the LA area has now expanded to include facilities in five states across the country. Clients who have experienced treatment at both the original site and the newer affiliate sites say there are more differences than similarities. Presenting this data as illustrative of the current treatment they offer is misleading.
  • Anorexic patients were considered to have “good,” “intermediate” or “poor” outcomes based solely on two indicators– weight and return of menses. If a patient was at a BMI of 18 or higher and was menstruating at discharge/follow-up, she was judged to have a “good outcome.” Having just one or the other was considered “intermediate.” So many problems here:
  • A client may have gained weight but held onto or even picked up new symptoms. By these indicators, it would be completely possible for someone to have a “good outcome” while binge/purging multiple times a day, as long as she had a normal BMI and a period when filling out the survey. This client should not be considered a success story; she merely falls into a different diagnostic category.
  • Also by these indicators, it would be possible for someone to have an “intermediate outcome” while still drastically underweight and engaging in multiple behaviors on a daily basis, as long as she was getting a period. While not common, it is possible to still menstruate normally while severely underweight, which is why the DSM-5 removed this as a qualifier for anorexia.
  • And hello, what about men with eating disorders? Hint: they never menstruate, hehe. (Although irrelevant to this particular study because Monte Nido only admits females)
  • They do use some additional outcome measures to assess progress (Eating Disorder Inventory [EDI-2], Beck Depression Inventory [BDI-II], self-reported progress] and while these measures do indicate some significant improvement, it is important to consider who is completing the discharge and follow-up surveys. While there was a 75% completion rate of follow-up surveys, this only included clients who stayed at least 30 days. This weeds out those who dropped out early, most likely due to not finding the program helpful or requiring a higher level of care (e.g., medical hospitalization). Also, with any follow-up survey like this, it is far more common to get participation from those doing well, which does not lend itself to a very representative sample.

There is some good news– In July, The Joint Commission will implement a set of minimum requirements needed for accreditation of residential centers for eating disorders. These requirements include new standards for assessment, treatment planning, family involvement, transitions of care, and outcome measures. This is definitely a step in the right direction.

However, it is still my personal opinion that residential treatment is rarely the answer. I think treatment should always be administered in the least restrictive setting. Inpatient facilities or hospital admissions should be reserved for when there is significant medical or psychiatric instability and/or when behaviors are so rampant they interfere with normal functioning. I can think of several occasions when this kind of treatment definitely benefitted me, either because it legit “saved my life” or because it helped bring my disorder under enough control so I could work on my real issues outside the hospital. This is helpful. These kind of admissions should absolutely be covered. But, 5 month stays at beachside houses where you pay upwards of $1,500/day to draw pretty pictures and do watered down yoga? Maybe not.


When society assumes we all want, need, or should “fix ourselves”

In my second year of grad school a professor from another department contacted me about joining her research team. Her project was aimed to “empower girls, while placing emphasis on eating in normal and healthful ways, developing increased levels of self-esteem and media/advertising literacy.” Sounded great! I was eager to start. Then we met to go over the details of the project and things took a major turn. Children participating in the program would be instructed to go through a workbook of food pictures and draw happy faces next to the “good foods” and sad faces next to the “bad foods.” They would be required to keep daily food records that would later be judged (by us, the researchers) as simply “healthy” or “unhealthy.” And finally, the kids would either be rewarded or punished based on their BMI via a very flawed token economy system. The kids taking part in this program were between 5 and 12 years old and selected solely because they came from families of a specific income bracket and region of Los Angeles, thus putting them at high risk for obesity.

Now, obesity is a major public health concern in this country; there is no denying that. I’m not going to be one of those people who whines and cries about how the anti-obesity campaigns are to blame for the “rising epidemic” of eating disorders. No kid is going to develop an eating disorder simply because she participated in some shoddy program like the one described above. Eating disorders stem from a complex combination of genetic, personality, and environmental factors, not a single trigger. However, repeated exposure to these messages (i.e., fat = bad, thin = good, an entire diet labeled as unhealthy because of one “bad” food) can take its toll and lead to a very disordered relationships with food. And of course “disordered eating” and “eating disorder” are two very different things, but patterns of disordered eating can certainly put people at greater risk for developing eating disorders.

I think these messages are sometimes even more harmful to those already in the grips of an eating disorder, and especially those trying to recover. The messages we get on a regular basis about food and weight are often in direct conflict with the messages fed so forcefully in eating disorder treatment programs. How many times was I told the following while in a treatment setting?

  • There are no “good” or “bad” foods.
  • Everything fits, anything in moderation.
  • Dietary fat will not make you fat, it’s an essential nutrient. It makes your hair thick and shiny. Yay healthy fats!
  • Being underweight is associated with more health risks than being overweight (some studies say)
  • This is all fine and good behind the walls of a treatment center but as soon as you settle back into the real world all of these messages go out the window. Foods are definitely “good” or “bad,” every food does NOT fit, and dietary fat (or dairy, or gluten, or carbs, or whatever the current trend) WILL make you fat. According to everything you hear and read. Confusing much?

    For most of my life I really disliked (and in the worst times, all-out feared/avoided) not only eating in the presence of others but even just talking about food in specific ways. I was completely obsessed with food and thought about it all the time, but hated discussing it or even acknowledging its existence to others. I was not one of those anorexics who loved cooking for others or wanted to work with food for a living; food was a completely private thing for me. Obviously my avoidance of social eating situations didn’t work in treatment settings when meals were almost always eaten in groups, but that was somehow less terrifying (in a social sense) because there was the understanding among us that we were all there for a reason and were in a way being “forced” to eat. Secretly though, I think most of us were actually relieved to finally be given permission to eat…

    I never got much out of outpatient treatment because I refused to talk about food in any specific way. I wasn’t trying to be difficult I just could never allow myself to be vulnerable to the possible judgement, even from the people who were probably least likely to judge me. I had similar reservations about discussing specific numbers (calorie amounts) or weights (my own)– basically I was terrified of anyone having access to specific numeric data to judge me by. When asked to try to explain this, I would use the example of my long-time constant fear of being “caught” in a grocery store or restaurant either buying or eating food (or even just looking at it, really) and having people see me and think, “Eww, why is she eating that? Someone as [fat/lazy/gross] as her should not be eating [insert pretty much any food]!” And of course upon hearing this people would tell me how crazy I was for thinking such things… I had never been overweight and was usually quite underweight when having these fears. I can understand this now and even back then I think I rationally knew people weren’t ever looking at me and thinking “fat” or “this girl shouldn’t be eating” but the fear of being judged based solely on what I choose to eat is still pretty real.

    A couple months ago a friend of mine posted a very provocative post on Facebook in reaction to seeing an overweight woman in a grocery store with a cart full of “junk food.” This friend of mine (who I will now refer to as the Food Police, or FP for short), made extremely judgmental remarks about how she wanted to take a picture of the woman with her cart because it was just so funny! She blasted the poor woman– a complete stranger– for being “gross and stupid” for eating such bad foods while being “so overweight with acne.” FP thought it would be even funnier to take a picture of the two of them together with their food, because FP was a thin clear-skinned vegan with a cart full of kale and baby carrots. Oh the contrast!

    At first I was quite furious and wanted to call up all the therapists over the years who ever told me “no one is judging you for what you eat” and use this as solid proof that people definitely were and are judging me! I better never let myself be seen in public with food ever again. But… no. Calm down. I now have the wisdom of knowing that FP is the weird one here. Honestly, FP probably does judge me for eating pretzels (sodium), Greek yogurt (dairy), or even drinking Diet Coke (those damn unnatural chemicals), but I know most people probably couldn’t care less.

    I’ll be the first to admit I am a highly sensitive person. Not everyone with an eating disorder is so outwardly affected by these things. In fact, many people I know with eating disorders don’t relate to this at all. They have no problem discussing the details of what they eat and may even prefer social eating situations in an effort to feel and appear “normal.” And yet, I have no doubt that even those who appear unfazed by it all are still absorbing these messages on a deeper level.

    There seems to be a widespread generalization that everyone in this country is overweight, lazy, and in need of a drastic body and nutrition makeover. I, like so many others, bought into the Fitbit craze last year and purchased a shiny new purple Fitbit Charge HR (which I no longer use because it quickly made me fear for my sanity, but that’s a blog for another day). One of the first things I noticed when I set up my account was that it just assumed anyone who bought a Fitbit was looking to lose weight. I was immediately asked about my weight loss goals. Just for kicks I decided to put in a ridiculously low “goal weight” (a weight even I’ll admit I probably wouldn’t survive long at) and I got the following message, “Good luck achieving your goals! In order to reach ___ lbs in two months, please sustain a _____ calorie deficit, or adjust to a _____ calorie deficit to reach your goal in just one month!” Welp, that was awkward! My new Fitbit just wished me well on my path to probable death! Obviously it was just a stock message, and obviously I was not serious when putting in my “goal.” I just wanted to test my suspicions. I can now easily distinguish the messages that are meant for me and those that are not, but what about that 9, 10, or 11 year-old who grew up being scolded for every “bad” food she ever laid eyes on?

    I realize the population of people who may internalize these messages and react by self-destructing is very small compared to those people who either (a) don’t give a damn or who (b) may actually benefit from them. I’m not suggesting we ignore the nation’s obesity problem all for the sake of not upsetting a small subset of people. I am suggesting we go about the problem in a different way, although I’m not sure what that is yet. Maybe we could start by not asking 5 year-olds to draw sad faces on pictures of ice cream cones?