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.
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