On Shame

It is estimated that in the United States alone, approximately 43.7 million adults (18.6 %) have a diagnosable mental illness, yet only half receive treatment. This could be the collective result of a multitude of socioeconomic factors that limit access to health care (1 – socioeconomic restrictions). But what are the main impediments to seeking treatment among those with the means to do so? It could be that most forms of mental illness by their very nature impair one’s ability to recognize that they have a problem to begin with, such that those afflicted lack sufficient insight into their condition to think that their particular set of problems warrant medical attention (2 – lack of insight). Let’s say we’ve now accounted for about 2/3 of those 21.85 million who don’t seek treatment - and yes I’m making that number up because I don’t have the statistics on this, but humor me for a bit - what about the other approximately 7.283 million? I would venture that shame plays a significant role in the reluctance of some individuals to seek treatment for a mental disorder (3 – shame). And in large enough doses, shame may even evolve into the sort of self-deception that leads to rationalizations for maladaptive and destructive behavior, ultimately culminating in what is commonly referred to as lack of insight. So in fact, shame may account for an even greater share of the untreated population than originally estimated.

But what causes shame? The stigmatization of mental illness can be traced back to the dawn of civilization, and its effect is so sweeping and pervasive that it permeates our culture at almost every level. Whether it be at school, at work or at family gatherings, significant deviations from behavioral norms are treated as serious moral failings, and this form of social control becomes internalized as shame. And this is mostly a good thing – we wouldn’t want it to become socially acceptable for someone to run you off the road or stab you eye with an electric toothbrush. Social deterrents for violent or other seriously harmful behavior are desirable, but where do we draw the line? Why do we feel ashamed for hearing voices or being too depressed to get out of bed in the morning? The answers to those questions are beyond the scope of this blog post, but maybe I’ll get back to them at a later time.

As it turns out, shame and mental illness are inexorably linked. They form an insidious web of reciprocal and mutually reinforcing bonds that effectively subdue and paralyze their victim. And shame arises not only from the stigma of being mentally ill, but often has its roots in childhood trauma, abuse, marginalization, bullying, ostracism, and neglect, the very things that are thought to cause mental illness in the first place. Thus shame causes mental illness, and mental illness, by way of social stigmatization and marginalization, produces shame.

And shame is a definitely one of the main reasons I don’t like to admit to anyone, except in rare circumstances, that I have any form of mental illness. I have never, for instance, called in sick because I was too depressed. Or because I couldn’t bear the thought of being seen or spoken to by another human being. Or that I had just ravaged my face with a pair of tweezers because I noticed some spots forming on my chin. But in fact, I have done all of those things. I typically make up a “legitimate” or organic illness as a cover story for my depression, my social phobia, or my dermatillomania. I can’t go out to dinner because I have food poisoning, or I won’t be able to meet up for drinks because being in the presence of others makes me feel like crawling under a rock. The truth is, I’m tired of having to lie all the time about what’s really bothering me. The shame of it all actually exacerbates the underlying problem, such that I’m afraid to reveal almost anything about myself to others lest they be able to use that information to make inferences about my emotional state or lack of social adjustment. I don’t like people to see where I live, or ride in my car, or even meet my friends, family or significant others. What will this person reveal about me to the people I have to hide my “real self” from? The people close to me know things about me that others can’t know, so by some weird transitive property everyone will know everything and I’ll have no more secrets. My house is full of books and movies about mental illness, suicide and deformity (due to my BDD), so just a cursory glance at my bookshelf will tell a person more about me than I’d ever want them to know. Better to be reclusive and have everyone assume that you’re just an antisocial snob. The freak they know is probably better than the freak they don’t know.

Not only does it keep me at arm’s length from other people, but it has hindered any sort of therapeutic process as well. There are things I simply can’t talk about with a therapist without fear of their judgment and eventual condemnation. Unfortunately therapists are only human beings, and the same rules that govern my interactions with other people apply to them. And censoring myself in therapy just seems too counterproductive to justify the cost and inconvenience. So I don’t go to therapy. I just learn to cope with things in my own maladaptive, self-destructive way, and I suspect a lot of other people do the same.

So why is mental illness so undertreated? Maybe a better question is why do we hold people with mental illness in such low regard? At times it feels like one small step above being a convicted criminal. But mostly I think it reflects the fact that we are still pretty much in the dark ages when it comes to mental illness, both scientifically and politically. From institutionalization, the denial basic human rights and dignities, forced drugging and electroshock treatments, and even gun legislation. From a socio-cultural perspective, we still operate under a lynch mob mentality regarding the mentally ill, the best examples arising in the aftermath of some mass shooting tragedy. Truth be told, people with severe mental illness are more likely to be the victims of violent crime than the perpetrators, so denying them the means of self-defense doesn’t really solve anything (unless your goal is to get them killed off faster, but we’ll save negative eugenics for another post).

Spaces for the Mad

     It's all about commitment, folks. What we commit ourselves to; what we are committed to by others-- we live within a space that's not just about psychiatry, but also an ethical, political, and interpersonal space. We share our commitments, whatever they may be, with others, no matter what space our commitments lead us to. So for my first blog post, I'm going to talk briefly about my first experience in a psych ward, what led me there, and what I found inhabiting that space.
      This commitment was not my first, or even my hundred and first, experience with psychiatry and the mental health system. I had been in therapy in high school, briefly in college, and I had been on medication for five years before I found myself at the emergency room. It wasn't even the first or the most severe experience I'd had with suicidal ideation. So why was I there? Well, first, I had only recently been put on Abilify, and was starting to feel much worse mentally than I had before I was on it (many of the new 'atypical' antipsychotics can cause depression) and I had just been in a meeting with my support group, which I had been attending for a few months. I liked the people there, mostly, and so when they heard what I was going through, and their immediate response was to tell me that I should get in touch with my doctor and go off the Abilify immediately, I listened. After the meeting broke up, I paged my doctor. She told me to go to the hospital, specifically Northwestern Memorial, a large hospital located in downtown Chicago. In just a few minutes on the El, and a short walk in the brisk March wind, I walked through the doors of the emergency room late in the evening of a Wednesday night. The Waiting room was about half-full, I noticed as I glanced around, of people with that peculiar expression of boredom mixed with pain, and I prepared myself for a long wait as I walked up to the Triage nurse's window.
     To my surprise, as soon as I told her that I was suicidal, and that I had the means to carry out my nefarious plans (sharp knives are funny in their ubiquity) I was admitted immediately, and taken to a private area by an armed guard, where I took my clothes off and they gave me a hospital gown, a blanket, and a bed. Though my area was curtained off on two sides, I could see the guard position himself on a stool near the door, and I could see also that I was not the only patient in the area: there was an older, black man, very disheveled, who I pegged as probably homeless, who kept asking for sandwiches and juice cups. Every so often, a nurse would wander in, check to see that we were still there, flirt briefly with the guard, and, after some delay, bring both myself and the homeless man soggy, refrigerated ham sandwiches and juice cups. I began shortly to want a cigarette; after a couple of hours the desire turned to a raging obsession. The nurse told me I couldn't get a patch or any other form of nicotine or any other type of medication, not even the ones that I had missed, until I was seen by a doctor and formally admitted to the Ward. I tried to sleep, but the bright fluorescents overhead with their buzzing and the sound of the homeless man asking for another sandwich and more juice cups, plus the unfamiliarity of my surroundings, kept me in a state of drawn-out, weary wakefulness as the hours passed. Finally, some 13 hours after I had stepped into the Emergency Room, I was taken up in an elevator and led through several winding corridors (I found out later that the psych ward at Northwestern is not in the same 'building' as the Emergency room, but the buildings are all attached to each other, which seems rather unnecessarily confusing) to a room in the psych ward. The sun was just beginning to peek through the window, and I was displeased to find yet another probable homeless man, with an earth-shaking snore, in the other bed. I laid down and prepared to fall asleep anyway, only to be woken not thirty minutes later by the doctor on his rounds.
     He managed also to coincide with breakfast service. By the time he'd decided to put me on a different antipsychotic (I no longer, after I have been on so many, remember which one) and okayed a nicotine patch, I stumbled into the dining area and found a tray of very lukewarm eggs, bacon, and pancakes, and had a menu for the next day shoved at me, along with a three-inch dull pencil, by one of the orderlies. As I ate, I cast my eyes around my fellow patients, wondering how bad the next days were going to be. After all, I thought, aren't these all crazy people?
     I later learned, not just in this visit, but in several more visits to psych wards, that patients really fall into a smaller number of categories than one might think. 1: As I have mentioned, homeless people. These, a nurse once explained to me, are not there for any form of treatment, but for 'three hots (meals) and a cot' and are generally released within three days, or whatever the minimum for self-commitment is. 2: Repeat customers, who get to know both the staff and the system, and who come in whenever they are feeling particularly bad or need a very quick medication adjustment. In spite of the fact that this was my first time, I fell into this category, and did indeed visit that hospital several times thereafter, usually for medication adjustment. 3: First-timers who, for whatever reason, are just beginning their experiences with the psychiatric system. This includes both people who probably need to be there (like people who land there after an actual suicide attempt) and people who could probably get what they need from another source (like people who are drying out or otherwise dealing with withdrawal or other drug issues). Finally, there is group 4: the genuinely unpredictable, sometimes violent, people who really need a more permanent placement, like patients who have been diagnosed with schizophrenia (whether this diagnosis is helpful or not). They may start fights, they may sit in a corner and never say anything, avoiding all contact with others. They may do both in a single day. (There is also a group 5: the sleepers, but you never see them except at mealtimes; the rest of the time they spend in bed, so I don't include them with the rest of the population).
     My first time in, I spent a total of five days there. I'm not going to go through on a minute-by-minute analysis, but what I mostly found out is that psych wards are surprisingly dull. They feed you four times a day, heavy on the carbs, to make you sluggish; they offer "groups" that you can attend (and should, if you want to leave, since they count going to groups, for some reason, as a sign that you're ready to mix with the rest of society). They have art therapy. They offer sessions for Cognitive Behavioral Therapy. They like for you to meet at the beginning of the day to announce your 'goals' for the day, and they like you to meet at the end of the day to tell whether you've accomplished your 'goals.' They have a washer and dryer available on 1st-come basis, so if you're planning on a visit to a ward anytime soon, plan ahead and bring a few changes of clothes, or you're going to spend a lot of time in hospital gowns. They have a toilet and shower in each room, with a door that doesn't lock, and travel bottles of shampoo and soap.
     So there's not much left except to talk to each other, watch tv, or visit if you have any visitors or talk on the communal phone if you can get time in between everyone else who wants to use the phone. My first time in I spent some time playing chess with this guy who had recently moved to Chicago and was staying at the YMCA, the poor bastard, which might go to explain the bandages that ran from both wrists all the way up his forearms. Village People be damned. I also met no fewer than three international flight attendants, who all lived together and had apparently come in as a group after a particularly lively party that they refused to share the details of with me. I saw one fight and forced sedation and isolation. I met with a psychiatrist every day. My suicidal ideation went away as I adjusted to the new meds. They talked with my regular psychiatrist and social worker about how to keep me from having to visit them again (which initiative, as I mentioned before, was a complete failure, as I was to see the inside of that ward several more times). And after five days, I stepped into the afternoon March sunlight, blinked several times as my eyes adjusted, lit a cigarette, and walked up to the El to go back home.
     So what was this experience? What did I commit myself to? Never being able to pass a background check without raising some eyebrows? Just being that guy, y'know, the one that's been in the psych ward? I like to think it's more than that. I like to think that I was doing whatever it took, at the time, to stay alive; being willing to sacrifice a bit of institutional innocence to gain a better perspective on what would happen if I got worse. I shared my space with that institution and I really can't say that my life is better, or worse, for what I did. Commitments are like that: we choose on the basis of what seems best, and we can only hope that it is for the best. But we'll never know. A commitment once made can't be taken back: you can end it, but the time and space you gave it will always be there and have been there. So I wish you all good luck in your choices, and in doing so, and in writing this, I make a new commitment to myself, and to all of you.
  

Welcome to the Icarus Blog

I envision this blog to be resource for members of the Icarus project to post about their personal experiences with mental illness and as a forum where we can continue discussions about topics that are raised during our weekly meetings. If you are a member of the Icarus project and would like to be added to this blog, please email me at 14thhorseman@gmail.com and I would be happy to include you as an author.