From the Inside Out

Sophie F's picture

Mental illness has long since confounded people who have them, their families and those attempting to treat them. The current system for evaluating mental health status entails largely a set of diagnostic criteria that are designed to standardize diagnosis and treatment. The Diagnostic and Statistical Manual (DSM) in its current incarnation is a tome of symptoms, categories and diagnoses that are useful tools for mental health practitioners coming to grips with the varied presentation of behaviors that are characteristic of individuals with varying experiences. There is a vast difference according to all diagnostic measures, between anorexia nervosa, for example, and schizophrenia. Anorexia is defined as:   
1.   Refusal to maintain body weight at or above a minimally normal weight for age and height (eg, weight loss leading to maintenance of body weight less than 85% of that expected or failure to make expected weight gain during period of growth, leading to body weight less than 85% of that expected).
2. Intense fear of gaining weight or becoming fat, even though underweight.
3. Disturbance in the way in which one's body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or denial of the seriousness of the current low body weight.
4. In postmenarchal females, amenorrhea ie, the absence of at least three consecutive cycles. (A woman is considered to have amenorrhea if her periods occur only following hormone, eg, estrogen administration.)
(1)

On the other hand, the DSM IV describes schizophrenia in the following way:
A. Characteristic symptoms: Two (or more) of the following, each present for a significant portion of time during a 1-month period (or less if successfully treated):
* delusions
* hallucinations
* disorganized speech (e.g., frequent derailment or incoherence)
* grossly disorganized or catatonic behavior
* negative symptoms, i.e., affective flattening, alogia, or avolition
B. Social/occupational dysfunction: For a significant portion of the time since the onset of the disturbance, one or more major areas of functioning such as work, interpersonal relations, or self-care are markedly below the level achieved prior to the onset (or when the onset is in childhood or adolescence, failure to achieve expected level of interpersonal, academic, or occupational achievement).
(2)

This is the language of diagnosis. It is a way to objectively measure, as an outsider, an approximation of the experience of another person. It is a useful way to glimpse into the world of someone else and attempt to make meaning of behavior as viewed from the outside; but may, in fact, have its limitations. These diagnoses often entail a process of “ruling out” other diagnoses as a means of arriving at the appropriate one (3).  The question remains as to whether or not that which an outsider has determined to be readily definable and unique from others’ experiences is, in the experience of the individual who receives the diagnosis, actually so starkly different? When the objective measures used to delineate between mental illnesses based upon symptoms, whether observed by an outsider or reported by the individual herself, are looked at in conjunction with the internal experiences of someone diagnosed with anorexia, someone diagnosed with schizophrenia, with bipolar disorder and with depression are the diagnostic categories so readily distinguishable?

In order to explore the relationships between diagnosis and the internal experiences of the people being diagnosed, I will examine four memoirs written by four different people, each diagnosed with a different mental illness. Those books are Darkness Visible by William Stryron (4), Unquiet Mind by Kay Redfield Jamison (5), The Quiet Room  by Lori Schiller and Amanda Bennett (6), and  Wasted by Marya Hornbacher (7). In comparing the stories these individuals weave about their experiences with mental illness, this small sampling cannot and is not intended to be representative. And, of course, reading a memoir, a story, is the act of engaging in the subjectivity of meaning created by someone else, compounded by one’s own subjectivity, one’s own story creator.

At the outset, these four stories are different. They are different for the obvious reasons: they are the lives of four unique individuals and these individuals each are the embodiment of their experiences, their environments, and their genetic composition (8). These stories are different, too, because features of the internal experiences of people with anorexia, bipolar disorder, schizophrenia and depression are, seemingly, unique to those particular diagnostic categories, while also unique to those individuals. In some senses, the diagnostic categories are a logical outgrowth of the internal experiences, by virtue of the external manifestations we know as behavior. In other senses, the link between the categories, the objective measure of illness as seen from the outside, is not as directly linked to the internal experience.

William Styron writes that the moments of reprieve from his depression were few. He felt a “ dank joylessness,” (4, p.5) that was persistent and consistent, despite several hours a day of relative calm and normalcy. He also writes about his internal experience, describing it in this way, “…panic and dislocation, and a sense that my thought processes were being engulfed…obliterating any enjoyable response to the living world” (4, p.16). He writes of a pervasive “self-loathing (depression’s premier badge)” (4, p.19). These feelings permeated all of Styron’s interactions with the world, and his very sense of how he defined himself. This sense of doom and despair shrouded him and imprisoned him in his own body, to the point of wordlessness at times. He writes of his everyday interactions:

"There he must, despite the anguish devouring his brain, present a face approximating the one that is associated with ordinary events and companionship…he must try to utter small talk and be responsive to questions…But it is a fierce trial attempting to speak a few simple words."
(4, p.63).

When that which was once, in his mind, effortless to do, to speak to people, to interact with his wife, became tremendous obstacles to overcome, no longer sources of joy, for Styron these were the marks of depression. When speech to those who enter easily into dialogue becomes so onerous as to be painful, the internal experience can only but be one of great anguish. These internal experiences may well be consistent with Jamison’s account of the parts of her experiences with bipolar disorder, but are certainly not consistent entirely with either Marya Hornbacher or Lori Schiller’s accounts of eating disorders and schizophrenia respectively.

While Jamison describes her episodes of depression in somewhat similar language to that of Styron, her depression is qualitatively different in her experience of it, as it always follows a period of mania that she describes as, “…absolutely intoxicating states that gave rise to great personal pleasure, an incomparable flow of thoughts and a ceaseless energy” (5, p.5-6).  Furthermore, Jamison writes, “…The world was filled with pleasure and promise; I felt great. Not just great, really great…I felt I could do anything that no task was too difficult. My mind seemed clear, fabulously focused...” (5, p.36). The euphoria she describes is unsustainable, as she then would, inevitably, slip into a black hole of depression. The feverish pace at which she lived for fits and starts she describes in this way, “I did, finally, slow down. In fact, I came to a grinding halt” (5, p.37). So, while there are certain parallels to what Jamison describes her experience to be during periods of depression, it is in relation to what came before, the mania. Styron, on the other hand did not deal in extremes, instead experienced a constant dull, disaffected depression. Jamison writes, “I lost all interest in my schoolwork, friends…I had no idea of what was happening to me, and I would wake up in the morning with the profound sense of dread that I was somehow going to have to make it another day” (5, p.44). Her experience of “dread,” while similar to Styron’s accounts of his depression is in stark contrast to her manic phases, making her internal experience still somewhat different than his.

Lori Schiller’s story about schizophrenia is one of pervasive voices in her mind that wished her death and destruction. She refers to the voices in the capital form, as Voices, and as such characterizes them as other than she; the Voices are an entity that is not Lori herself. She writes:

"My head was filled with wild, strange thoughts. If I could jump fast enough and high enough, I thought, perhaps I could jump the Voices away…Yet still they continued, commanding me, pounding into my head. They began to curse and revile me…In the nights that followed this torture continued. In the morning, I was exhausted, drawn and white from fear and lack of sleep. In the dead of night I jumped, pursued by the vicious Voices."
(6, p. 6)

Schiller recounts a story of picking up the telephone, as the “…objects around me slowly became hostile” (6, p.17) and she kept hearing the phone ring, but every time she went to pick it up, there was silence on the other end of the phone. Not knowing if it was a classmate playing a prank or some feat of her mind, of the Voices, she became terrified to use the phone. What had once been ordinary to Schiller became frightening and extraordinary. This is, in some measure, a similar experience of Styron, but he did not fear objects in the same way, rather feared abandonment and was at once, afraid and murky, senses dulled. While for Schiller, the objects around her took on new meaning, for Styron, ordinary objects lost virtually all meaning. Schiller initially thought she could drive her voices away, while Styron and Jamison experience greater resignation to their internal experiences.

Mary Hornbacher writes about her struggles with eating disorders, at various times either anorexia or bulimia. Of anorexia, Hornbacher writes,

"… I had developed the idea that I personally was not allowed to eat…all of a sudden, it seemed perfectly delightful that I didn’t have to eat if I didn’t feel like it. And I didn’t feel like it…When people think about killing themselves, they usually think about killing themselves with the least amount of pain, the briefest period of suffering. This is different."
(7, p. 205)

For Hornbacher, the choice not to eat was an embrace of the suffering fueled internally by her experience of the world. Her internal world became less chaotic in her view of the external world when she turned her pain towards herself. And while this may, to some, read as a “choice,” it can be viewed no more as a choice than the Voices about which Schiller writes. The extent to which Hornbacher can actually control her thoughts, the product of her upbringing, her environment and her genes, cannot be relegated to a secondary position in the chain of command behind choice; it would seem, rather, that “choice” can only come with the full awareness of the possibility of something different from which to choose. In attempting to reconcile the conflict between her internal feelings and the world around her, Hornbacher caused herself suffering, perhaps the only way she knew to reconcile the internal and the external. However, this internal experience, in relation to food is not akin to the other writers’ stories in the way in which Hornbacher experiences it. Hornbacher acknowledges a wish not to die, but to suffer. Styron and Jamison describe their experiences in language that is less riddled by an apparent choice and speaks more closely to the feeling of sinking into a place of defeat without knowledge as to how one arrived there.

There are common themes among the four stories, despite their individual differences; these are threads that unite the stories of the four authors and that unite these four people. There is a sense that “it was not always like this,” something predated the mental illness, some sense, albeit vague in some cases, of prior normalcy, of balance. There is also a shared internal experience of a second self, which overtakes a natural or more familiar self. And finally, one of the most striking features of similarities between internal experiences is a sense of helplessness to effect change in their situations, to restore themselves to health. One of the baffling qualitative observations one could make about behavior, and as an extension, mental illness, is that it is fraught with contradictions. “I don’t want to live,” in one breath, and “Please don’t let me die,” in another. These two sentiments are seemingly irreconcilable, yet elucidative of a deep internal conflict. Who am I? And what is my role in the world? It seems these are questions with which many people wrestle, but with which those with mental illnesses may have more difficulty resolving.

Styron’s experience was a steep and slippery slide into depression and, as it unfolded, his descent was unpredictable and unstoppable in his mind. Upon emerging from depression, he looked back on it and was able to examine some factors that may have contributed to his mental state. However, it was, to the part of his mind that gave meaning to his experience, unexpected and extreme. And while he was vaguely aware that something was amiss, he could not know what that something was and wrote that no medication or therapy could have prevented the descent into depression that he experienced (4). He intellectualized the experience of joy he had in the past, but could not access that feeling, could not live it in the moment to such an extent that he contemplated suicide. The inability to experience the world, or oneself, as one had prior to illness is coincident with the feeling of being overtaken. Styron writes, “…sense of being accompanied by a second self—a wraithlike observer who, not sharing the dementia of his double, is able to watch with dispassionate curiosity as his companion struggles against the oncoming disaster, or decides to embrace it…” (4, p.64).  This also speaks to the conflicted nature of depression; Styron either fought against the impending storm or relented to the torrent within. With a sense of exhaustion and impending doom, and “despair beyond despair” (4, p.63) reorganizing one’s thoughts can feel like an insurmountable, perhaps impossible task. Certainly, this is an internal experience shared by all four writers in one sense or another, the crushing weight of their own thoughts and feelings seemingly impossible to navigate.

Styron’s internal experience is comparable, in some ways, to that of Kay Redfield Jamison, who has bipolar disorder. Jamison was somewhat aware that something inside of her mind had shifted, perhaps come into sharper focus, masking the parts of her by which she had come to define her existence. The things such as her precocity, love of family, friends, etc. Even before becoming a teenager, Jamison writes of being in second grade, witnessing a plane crash about which she wrote, “ From that afternoon on, I saw that death was also and always there” (5, p.13). As a second grader, this seems a tremendous burden to bear, thoughts of mortality without a clear contextual basis as to what those thought mean. Her newfound awareness did not immediately translate into the behaviors that are associated with bipolar disorder, but she was aware of that moment in second grade as being a turning point. As the years passed Jamison wrote, “By the time I was sixteen or seventeen it became clear that my energies and enthusiasms could be exhausting to the people around me…after long weeks of flying high and sleeping little, my thinking would take a downward turn”  (5, p.35). And, as with Styron, the realization that something was amiss did not translate readily into a set of tools to employ to prevent the overwhelming internal experiences. Jamison, too, shares Styron’s sense of being overtaken by something or someone other than who she knew herself to be, “However lodged within my mind and soul the darkness became, it almost always seemed an outside force that was at war with my natural self” (5, p. 15). There is on the one hand a sense that one cannot escape the thoughts and feelings and on the other a profound realization that the thoughts do not define her entirely. Schiller and Hornbacher share this sentiment.

Lori Schiller writes about her ups and downs with schizophrenia, in terms of how much the voices were present and how able she was to function as in the world to the extent that she wished. She writes, “By summer’s end, I was sick, without any clear idea of what was happening to me or why. And as the Voices evolved into a full-scale illness, one that I only later learned was called schizophrenia, it snatched from me my tranquility, sometimes my self-possession, and very nearly my life.” (6, p.7) This, too, suggests that Schiller did not see the illness coming, and as such, while aware once it struck, did not have a way to guard against it. This is similar to the experiences of both Styron and Jamison, a sense of surprise at how strong and tormenting the internal experience had become without a sense of what to do to overcome those thoughts. Schiller goes into detail about the voices feeling as though they were inside of her, but identifying them as other than her. This theme of mental illness as “other” is a strong one in the experiences of those who have them.

Hornbacher writes primarily about her experiences with bulimia and anorexia. She writes of a time when she first became aware of the changes in her internal experience, “Through the looking glass I went and things turned upside down, inside out,” (7, p.123). She went from a life she recognized and clung to, to the life of someone with an eating disorder, becoming someone she no longer recognized. This was not, in her experience, a choice made with complete awareness, rather a slow movement towards one thing and away from another. She writes of bulimia, “…it is at once tempting, seductive and terrifying. It divides the brain in half: you take in, you reject; you need; you do not need. It is not a comfortable split even early on…You have a specific focus. Your thoughts do not race as much.” (7, p.42) This “split” to which Hornbacher refers is, in essence, similar to the experiences written about by Styron, Jamison and Schiller. Even Styron is able to have a few hours of reprieve from his depression that otherwise plagues him non-stop, evidence for a split, of sorts. The split may be more explicit in the case of Hornbacher, Jamison and Schiller, but it is a thread that is common between the four as indicated by accounts of their internal experiences. Hornbacher writes:

"I felt like I was going out of my mind. My head was never quiet. …the strange blackouts I began to have - pure silence, not sleeplike but deathlike - and the hellish shrieking jumble of my own thoughts and the voices of the world. And the sharp hiss of one voice that started out softly, as though below layers of moss, or flesh, and gradually became so loud it drowned out everything else: Thinner, it said. You've got to get thinner."
(7, p.69).

Here Hornbacher refers to a voice, which in her experience refers to her as “you” not as “I,” which indicated that her internal process was such that the voice felt like an intruder, felt unlike who she was, given that in one’s head, the voice we hear generally is an “I” voice. Styron, Jamison and Schiller all recount a similar sense of an “intruder.” This internal experience, a world within a world, where “I” is at war with “other” is a common thread throughout the four stories.  

Other similarities in stories stem from the ways in which the authors present themselves to the world and how presentation can differ from one’s internal sense of one’s world. Styron did not explicitly try to mask the way he felt during his depression, though did not realize, perhaps how far he had slipped into depression until outsiders noted it. It is an interesting feature of the internal experience that one either explicitly attempts to mask one’s anguish, or one is so completely detached that one is not even aware how far one has slipped. Styron writes, “One does not abandon, even briefly, one’s bed of nails, but is attached to it wherever one goes…the walking wounded” (4, p.62). Because the “murk” of depression leads to “minds turned agonizingly inward,” (4, p.47). Styron went from seeing the world in color and with texture to being inside of his mind feeling as though he could not escape. Styron writes that he was not aware that others could recognize his pain, until a photographer takes his picture and urges him to “smile” and Styron recounts having obeyed this request. The photographer later telephones Styron to say the photographs must be retaken because they are “too full of anguish” (4, p.58). Styron’s felt so trapped that he did not see how depression had changed him nor did he realize it was something of which outsiders might be aware. This sense of isolation and desolation is powerfully consistent across the four stories, whether the efforts to mask one’s internal world are direct or not.

While Styron did not realize how strongly his turn inwards was visible to others who  observed him, Jamison, as she became more aware of her illness, did attempt to hide it from others. This creates another layer of torment, as she describes it. She made a great effort to keep her internal experiences from other people. She writes, “I made…an enormous effort not to be noticed” (5, p.39). The feeling that one must hide one’s pain, or “madness” is closely related to a feeling that one cannot change one’s circumstances, that one does not have the agency required to make change, assuming one recognizes changes need to be made. Of her handling of her vacillations in mood Jamison writes:

"I had learned to accommodate quite well to them. I had developed mechanisms of self-control, to keep down the peals of singularly inappropriate laughter, and set rigid limits on my irritability. I avoided situations that might trip or jangle my hypersensitive wiring, and I learned to pretend I was paying attention or following a logical point when my mind was off chasing rabbits in a thousand directions."     (5, p.82).  

From this adaptability to the norms of society, to her expectations of herself comes a conflict between what Jamison’s life was from the inside and what she projected, in times when she could control her behavior, to the outside. An extension of this was a deep sense of inescapability. Jamison writes, “At one point I was determined that if my mind…did not stop racing and begin working normally again I would kill myself” (5, p.83). Jamison over and again describes feeling that she was not herself and did not know how to return to herself, to reclaim what she had lost and this was a source of tension and fear. This is an essential commonality between the stories of many with mental illness, which is a complete sense of either paralysis about how to resolve internal conflict, or inability to even fathom a way through the labyrinth of one’s internal experiences. Both Styron , Schiller and Hornbacher write about arriving at the edge between life and death and questioning their ability and desire to live as a result of the anguish of their internal experiences, their sense of helplessness almost overwhelming their desire to live.

Schiller writes about her internal experience, feeling as though nobody else should know about her struggles. She feared she was mentally ill, knew herself to be at some level, but felt the need to hide it from her family. She writes, “…I suddenly had a new task: keeping my terrible secret. It took all of my determination, and all of my drive. I was putting on a super performance nearly every day. I was pretending that nothing had changed, even though nothing at all was the same” (6, p.15). The internal experience for Schiller had transformed, but these drastic changes in her experience were not visible to an outsider, hence the dilemma of being stuck inside of something, one’s own head, that is not readily visible to anyone else. Schiller further writes about finally meeting with a psychiatrist:

"Week after week I met with him, yet I couldn’t speak. I couldn’t talk about the Voices. It was too dangerous. The Voices were twisting themselves around me. It was hard to tell where they left off and I began. They threatened me and I believed them. If I squealed on the Voices, they might kill me. If I ratted them out, the person I told would have to die."                                                                       (6, p.25).

The feeling that her internal experiences had to be kept secret, in Schiller’s case, as a matter of safety for herself and those around her, keeps her in a place of continuing to experience the same perceptions of herself and the world. She writes of feeling unable to communicate the depth of her struggles, even as some of her internal experience was manifest for others who were viewing her to witness. The perception of lack of agency is potent and severe, leading many to take drastic measures to alleviate that feeling.

Hornbacher, too, experiences mental illness as something within her that should remain so, despite feeling desperate and lost at times.  For Hornbacher, the desperation seemed less when she hid inside of herself; she was less afraid. She writes, "I was not as I appeared. I liked that. I was a magician. No one could see what I hid underneath, and I didn't want them to, because what I hid seemed raw" (7, p.32). Furthermore she writes, “I had a secret. It was a guilty secret, certainly. But it was my secret. I had something to hold on to. It was company. It kept me calm. It filled me up. It emptied me out (7, p.42). The conflict of being someone inside that only you can know versus the “you” that is seen by others runs deep and is a source of anguish for all four of the writers. Hornbacher writes about protecting the internal experience because she felt it to be the only part of her world over which she reigned. Her sense that her internal experience was her only source of worldly power, in the absence of meaningful relationships and a perception of the world conducive to her flourishing, Hornbacher retreated further inside, such that she felt she had no way out. Here, again, is the theme of agency: the idea that nobody is allowed to know one’s internal experience, nor is it possible for one to escape one’s internal experience. When one’s internal experience is frightening, anguishing and not conducive to continued personal progress, this feeling of lack of agency is a source of great despair. Hornbacher writes of her internal experience and her simultaneous feeling of needing it and fearing it:

"The sickness occupies your every thought, breathes like a lover at your ear; the sickness stands at your shoulder in the mirror, absorbed with your body, each inch of skin and flesh, and you let it work you over, touch you with rough hands that thrill. Nothing will ever be so close to you again. You will never find a lover so careful, so attentive, so unconditionally present and concerned only with you."
(7, p.125).

For Hornbacher, the outside world did not seem one in which she was able to flourish and so the “turning inwards” of Styron’s world was a way to create order out of seeming disorder, to feel important, empowered and in control inside of herself.  The effect, however, was further isolation and a feeling of intense loneliness and despair.

There are many other factors, which are not within the scope of this paper that are important in understanding the faces of mental illness. These factors are largely the external factors, things outside of ourselves that are an integral part of identify-formation, the definition of “I” for each of us. These are variable such as familial factors, namely the role of the environment in which we are raised and, too, the role of genetics (8). Of note, which makes the stories of Styron, Jamison, Hornbacher and Schiller different than many other people with mental illnesses is that they were able to seek help and achieve some sort of resolution, imperfect as it may be, to their conflicts. They each achieved some measure of control over their internal experiences, where they previously felt they had none. This is not always, or even often, the case with people experiencing mental illness.

To suggest that any two human experiences can be the “same” is to suggest the impossible, but also implicitly, to negate the observations that suggest genes and environment together contribute to our behaviors, to our internal experiences, thus to how a person experiences her world. However, to reduce human experiences to the sum of its parts, to schizophrenia, to eating disorders, depression and bipolar disorder, is to overlook the similarities in the ways in which those diagnosed with mental illnesses experience the world and themselves in the world. This is an argument for greater sensitivity to the individual and her experiences from the inside and decidedly not an argument for homogenization or conflation of mental illness diagnostic categories, which have their usefulness in some contexts. Styron writes, “It is of great importance that those who are suffering a siege, perhaps for the first time, be told—be convinced, rather that the illness will run its course and that they will pull through” (76).  Having experienced depression, lived through it and returned to a more balanced internal experience, who better to describe the needs of those “under siege” than Styron. Styron writes that there is a “…basic inability of healthy people to imagine a form of torment so alien to everyday experience” (4, p.17). There is no way to know the experience of another and especially in the case of mental illness in which the person with the illness often has trouble communicating her internal experience. On the subject of communicating her internal experiences, Hornbacher writes, “But the part that kept lurking, unarticulated, in the back of my head wasn’t discussed” (7, p. 206). If there are more similarities across diagnostic categories than the categories themselves reveal, there is a need to bring to light the internal experiences of those with mental illness, to free them from the sense of helplessness and lack of agency, by making the internal experiences shared knowledge. This is not a solution unto itself, but one piece of a multi-faceted puzzle, a piece that may well prove useful in understanding mental illness.

References

1.http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/psychiatry/eat  ing/table1.htm accessed 24 October, 2008.

2. http://www.counsellingresource.com/distress/schizophrenia/dsm/schizophrenia.html        
accessed 24 October, 2008.

3. http://www.schizophrenia.com/diag.php#diagnosis accessed 28 October, 2008

4. Styron, William. Darkness Visible: A Memoir of Madness. New York: Modern
Library, 2007.

5. Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness. New.
York: Random House, 1995.

6. Schiller, Lori and Bennett, Amanda. The Quiet Room: A Journey Out of the Torment
of Madness. New York: Warner Books, 1994.

7. Hornbacher, Marya. Wasted. New York: Harper Perennial, 1998.

8. http://serendip.brynmawr.edu/gen_beh/Lett-NYT-12-94.html accessed 29 October,  
2008.



Comments

Paul Grobstein's picture

seeing forests instead of trees?

"If there are more similarities across diagnostic categories than the categories themselves reveal, there is ... one piece of a multi-faceted puzzle, a piece that may well prove useful in understanding mental illness."

And it does seem from your inquiry that there are indeed such "similarities." What is this telling us about mental illness (and the brain) that we might not have been able to see from more "objective" and focused characterizations like those of the DSM?

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