# Losing myself



## beatnikbdog (Jan 8, 2005)

Hey everyone,
I've browsed through this site on and off over the past couple years, but never formally introduced myself or told my story. The following is a paper that I wrote for a psychology class this past semester. It is about my experience of DP/DR, and I thought some of you might enjoy reading it. I apologize for the length.. I just felt like I had so much to say about all this.. in reality, I could write many more pages, and probably will as time goes on. As an addendum, I have added some words of advice and coping strategies at the end of this post. I wish you all the best, and happy new year to you all! 

*Losing Myself 
By Bryan Beck*

_?To me depersonalization seems to have been my mind tapping at the door of some mystical experience, or even some kind of higher knowledge. But it never got in because it didn?t know the password. So it walked away and decided it was just sick. The mind never knew what amazing things lay on the other side of that door, nor how to access them.? (Simeon 148) _

A few years ago, the words depersonalization and derealization meant very little to me. Part of me wishes that I had never encountered these terms; moreover, that part of me wishes I would not have encountered the experiences that the words entail. But for the most part, I like to think that I?m grateful to know these experiences so well, despite all the pain and anguish they have caused me.

Although depersonalization is generally considered the third most prevalent psychiatric symptom following depression and anxiety, most people aren?t familiar with it. Throughout this paper, I will refer to depersonalization disorder as DPD in an effort to save space. DPD refers to the experiences of both depersonalization and derealization, which I will describe in more detail as the story progresses. It?s been difficult for me to decide where to begin with this project. How do you describe something so foreign, so divergent from most people?s conceptions of ?normality?? Relying on words alone to describe something in the realm of the unspoken, that is my dilemma.

I find myself stumped, doubting my ability to really communicate the depth of this experience. In fact, I know that I cannot communicate it in words alone; DPD is a felt experience, and thus it is only by experiencing it that one can truly grasp it. In Feeling Unreal by Dr. Daphne Simeon, an amazing book that was just published a few months ago, a woman named Joanne describes similar ambivalence about describing her condition: ?With a disease that people know, you get some degree of empathy. But if you try to explain this, people either think you?re crazy or completely self-absorbed and neurotic. So you keep your mouth shut and suffer silently? (10). This is the stance that I have generally taken toward my experience of DPD; I rarely share it with others, fearing that my descriptions will be met judgmentally.

In fact, my roommate Josh, one of my best friends, whom I?ve known for over 10 years, has never heard me utter the words depersonalization or derealization. He knows that I was ?ill? and reclusive for quite some time when my DPD first struck, and I?m sure that he has noticed definite behavioral changes in me since that time, but I have not yet brought myself to the point of actually trying to explain it to him. I wouldn?t know where to begin; hell, it?s difficult enough just trying to make sense of it in the course of a paper such as this. Thus, I guess you could say that, for the most part, the suffering that I?ve experienced during the past few years falls into the category of disenfranchised grief. But I?m getting ahead of myself. Let me first explain the course of events that got me here.

_The Blow of the Void_

It was like any other day during January 2003. However, I never would have guessed that this particular day would alter the course of my life so drastically. While smoking pot with some friends, I became extremely agitated. My mind became completely blank, and I was unable to communicate with the people around me. I felt that the room I was in was suffocating me. I became dizzy and felt nauseous. It took all the effort I could muster to get myself to a phone and call my dad for a ride home. Arriving at my parents? house, I laid down to rest, not sure what was happening but assuming this was an acute, fleeting incident. After all, I had been smoking pot almost daily for about five years without anything like this ever happening.

Upon waking up the next day, I felt fatigued and in a sort of mental fog. Again, I assumed this to be a temporary condition, the residual effects of whatever had happened the previous day. I proceeded to attempt going about my usual routine, but things seemed excessively tedious. My mind still felt blank and the world around me seemed strangely surreal, taking on a flat, cardboard-like appearance. I felt oddly uncomfortable in my own skin. Even my parents, with whom I had lived almost my entire life, seemed strangely unfamiliar. I, of course, still recognized the people around me, but something about the quality of the world around me had changed. Words that used to come naturally to my lips now felt buried amongst an ocean of jumbled, chaotic thoughts. Being an avid music lover, I was very disturbed to find the music that had previously evoked deep emotions in me now sounded strange as well; it was as though I was listening to it for the first time, but not in an enjoyable sense at all. Instead, it, along with everything else, seemed alien to me. In a strange sense, I felt as though I had lost some connection with God or the universe that I had previously taken for granted. It was as though I had lost touch with what essentially made me, me.

This was the beginning of a deep existential crisis, though I didn?t have these words to describe my experience at the time. Instead, all I knew was that something was wrong. I felt broken, unable to accomplish the simplest of actions. Everything felt like such a chore, I just wanted to fall asleep and never wake up. In fact, sleep became my activity of choice for the next few months. I lost my job and didn?t bother enrolling in classes for the spring semester; with the state that my mind was in, I felt that I could barely make it through the day, much less keep up with schoolwork. Fortunately, my mother is a very compassionate woman, and she allowed me to continue living at home despite the fact that I wasn?t doing anything to support myself financially. This was a mixed blessing, though, because now I had all the time in the world to ruminate about what was ?wrong? with me. The pile-up of discontinuing school and work probably contributed to my suffering, though it seemed like my only real option at the time.

It quickly became my life?s mission to figure out what had happened that fateful day, and sought out help from anyone who might be able to ?fix? me. I began spending all of my waking hours on the internet, searching endlessly for clues as to what these strange symptoms meant:

_"(Many patients) extrapolate that if symptoms set in suddenly, for no apparent reason, or feel like their mind is empty, or are associated with a fullness in the head or a tingling in the scalp or a visual fog, this must somehow mean that the depersonalization is indicative of brain damage and, even worse, irreversible brain damage. Proof of how powerful this conviction can be is the large number of depersonalization sufferers who have consulted numerous other medical professionals before becoming convinced, or despairing enough, to finally see a psychiatrist. Ophthalmologists, neurologists, ear-nose-and-throat doctors, endocrinologists, and chronic fatigue specialists have frequently been consulted" (190)._

And so it was that I went from doctor-to-doctor, requesting to be tested for this, that, and the other. Nobody could tell me what was wrong, but I definitely accumulated quite a list of what wasn?t wrong, according to all the test results. I continued to waste away my days, usually only moving between the computer and my bed. Since I felt unable to keep up a decent conversation, and had lost interest in this cardboard world, I fell out-of-touch with my friends. I literally did not see any of my friends for about half a year. I was too anxious that they would ?find me out?, that they would interpret my slowed cognitions and general apathy as a sign of impending insanity.

As an aside, I should mention that the fear of insanity had been in the back of my mind since early childhood. My father is schizophrenic, and I vividly recall overhearing my mother talk about the potential heredity of his condition when I was young. I?d have to say that was my biggest fear as a child: the thought of ?ending up like Dad?. As long as I can remember, he has been on total disability, unable to hold down a job and highly medicated. He spent the majority of my childhood sitting on the couch, staring off into nothing, and things have only continued to deteriorate. The thought of being in such an incapacitated state scared me senseless.

Of course, my friends were all aware of my dad?s state, and so I felt that I couldn?t provide them with any indication that I had changed; I felt that they would, without a doubt, interpret my newly detached state as proof that I had inherited my dad?s condition. I had my mom screen phone calls and tell my friends that I was simply ?sick?. At the time, that?s the best excuse I could offer; I did indeed feel very sick, and I still had no idea what this sickness was. I would not accept the words of doctors who told me that this was a case of depression or anxiety. I had been treated in the past for clinical depression, and this ?thing? that I was experiencing now was much different. According to Simeon, this is quite common of DPD sufferers: ?The patients are often clear that what they are struggling most with are feelings of ?unreality,? ?deadness,? or ?no self? and that they know the difference from being solely depressed or anxious? (83).

Of course, I knew nothing about DPD at this time. I think it?s important to re-emphasize that point: being stricken by something that you don?t understand and don?t have a language to describe is one of the loneliest feelings I can imagine, and definitely the loneliest feeling I?ve personally experienced. As these doctors kept providing me insufficient answers, I began to question my sanity even more. Was I simply a hypochondriac? Was this all in my head? I became more and more disheartened and hopeless. Life as I knew it seemed to have ended at age 21.

An ?answer? of sorts, or what turned out to be a piece in an increasingly complex puzzle, came during the summer of 2003, about six months after the initial panic attack. Having seen many doctors who seemed to have no reasonable answers for me, I finally received a vague diagnosis: chronic Epstein-Barr virus infection. This diagnosis came from a family doctor who had tested me for mono. Apparently, Epstein-Barr is the virus responsible for mono, and according to the largely inconclusive results of a blood test, this doctor told me that I had a rare, chronic form of the virus. Upon hearing this, I felt almost immediately well again. That evening, having a name for what was ?wrong? with me, I called up numerous friends that I had been avoiding, and ended up throwing a party at one of their houses. I felt like I had a lot of lost socializing to make up for.

For the next three weeks or so, I spent lots of time with friends, just hanging out and enjoying their company, appreciating these people that I had avoided for so long. I attempted smoking pot a couple times during this period, with scary results: I became panicky, blank, and very agitated all over again. I decided that I just wouldn?t smoke for a while, assuming that this virus was running its course.

Then, one day while sitting in my parents? basement, it hit me again. I was overcome by ?the void? and panicked, this time without ingesting drugs of any sort. I realized that this painful sense of detachment was not likely the result of any virus at all. It was at this time that I began to seriously consider the possibility that this illness was largely a psychological phenomenon. I still had no idea what the implications of this were, but I definitely saw that my thoughts were playing a big role. After all, I had felt almost like ?myself? again immediately after receiving the Epstein-Barr diagnosis. This amazingly quick ?recovery? should have been a clear indication that my mind and its perceptions were more to blame than any virus. Assuming that I must be having some sort of psychotic break, I became more depressed than ever. Again, I went into seclusion, feeling overwhelmed and at the end of my rope. At this point, suicide started to seem like a more appealing option, as I couldn?t imagine going on living a life so tedious and devoid of spirit. I felt that all of my past achievements were meaningless, that my whole life had been a cruel joke the universe played on me, with the punch line being that I would end up insane like my dad.

_Some Unsettling Answers _

After a couple more months of reclusive misery, I stumbled upon a website called dpselfhelp.com. At this website, I found a community of people from all over the world, suffering from strange phenomena called depersonalization and derealization. After having spent a good part of a year mulling through diagnostic criteria, it seemed that I had finally found an almost precise description of my condition.

I began reading as much as I could find about DPD, which, at the time was pretty limited. Most of what I learned came from personal accounts written by other sufferers online. It seems that, up until fairly recently, depersonalization and derealization have largely been considered symptoms of depression and/or anxiety disorders. It is only in the past 10 years or so that research psychologists have begun to acknowledge that DPD itself often presents as a primary condition, with depression and anxiety sometimes showing co-morbidity. The bulk of DPD research being conducted during this time has been at Mt. Sinai School of Medicine in New York and the Institute of Psychiatry in London, England. Until these two teams of researchers began their work, DPD was studied very little as a condition unto itself.

In 2001, psychiatrists Mauricio Sierra and German E. Berrios conducted a meta-analysis of depersonalization symptoms reported throughout psychiatric literature since 1898. Very interestingly, they found that ?the phenomenology of depersonalization has remained stable over the last hundred years?, supporting the notion of DPD as a condition separate from depression and anxiety. ?In addition to descriptions of unreality, the other key symptoms that emerged throughout the literature include: _emotional numbing, heightened self-observation, changes in body experience, changes in the experience of time and space, feelings of not being in control of movement (i.e., loss of feelings of agency); having the mind empty of thoughts, memories, and images, inability to focus and sustain attention_? (69).

The moment that I found out about DPD was, in some ways, similar to the moment that I originally received the Epstein-Barr diagnosis: ?Many with DPD have become momentarily elated upon reading or hearing their own thoughts and feelings, however bizarre, expressed by another? (17). However, this elation is indeed momentary. While the thought that I am not alone in my struggle was and is reassuring, it is also difficult to face the fact that this is a largely unknown and misunderstood diagnosis. No medication has shown to be truly effective at all in treating DPD. As I poked around the dpselfhelp.com website, I found literally thousands of stories of people in circumstances similar to mine. It became very disheartening to read the desperate words of so many people lost in their own muddled, unreal brains. Many people on the site show suicidal ideation, and it seems that lots of ?the regulars? on the site have given up on living altogether, their only social interaction being through these online conversations and fruitless trips to psychiatrists and assorted other doctors.

I felt that there must be more to the story; what about people who have overcome this disorder? There must be people out there who have won their battle with DPD, right? Well, yes, to a certain degree. There are certainly cases of people who have learned to live with the condition, so I began attempting to figure out what their cases had in common. I found that focusing outward is a large component, a first step in overcoming the misery of DPD. Since the nature of DPD entails a withdrawal from emotional experience and an intellectualized, ruminative manner of perceiving the world, it makes sense that becoming active might alleviate the symptoms. I had been doing nothing but sleeping and (barely) eating at my parents? house for the past year; I decided that in order to focus outward, I would need to remove myself from that situation.

Thus, with help from my parents and a therapist I was seeing, I began the process of relocating to Iowa City. In January 2004, almost one year after my initial panic attack, I took the leap and moved out on my own. Upon moving here to Iowa City, I was a mess. Though I was taking classes at Kirkwood, I was still constantly crippled by fear and unreality. I was unable to hold a job, and I spent much more time at the public library reading about religion, philosophy, and psychology than I did on my schoolwork. Feeling very out-of-touch with the people around me, I began getting drunk on the weekends in order to open up and feel somewhat comfortable, if for only a few hours at a time. However, I quickly learned that this was the worst thing I could possibly do. The DPD itself made it difficult enough to get out of bed in the morning; hangovers, I found, were worse than I had ever imagined previously. Going out drinking on a Friday night would literally leave me bed-ridden for almost the entire weekend.

Luckily, I eventually made some friends who didn?t drink. Namely, a guy named Japheth, who is originally from my hometown, and his wife Bridget, became close and dear to me. I began spending most of my free-time at their house. It was very reassuring at this time to find that I could still make friends, despite my condition. Though I went to high school with Japheth, we never hung out, and before moving to Iowa City, I had never really talked to him. In the depersonalized state that I found myself, I felt that making new friends would be impossible; maybe people who had known ?the real me? from a few years back would still hang out with me, but that?s only because they remember who I used to be. Anyone who met me now would surely see me as some sort of robotic, soulless bore. But, to my surprise, Japheth soon came to consider me his best friend; he even told me so! Though I was still largely in the grips of DPD, I now had someone I could hang out with and just ?be?; befriending Japheth and Bridget gave me true friends to talk to, allowing me to focus outward instead of being trapped alone inside my head.

It had been a while since I felt that I had any true friends. After the onset of DPD, I realized that most of my friends were people I used drugs with. I still consider some of those people my friends, but I needed to be around people in whose presence I didn?t feel the pressure to get high. I know that it?s part of my neurosis, but I now find it very difficult to hang out with people who use any sort of drug, even alcohol. I guess that by having to ?say no? to the temptations, I feel that I am in some way admitting that ?I?m crazy?. Of course, I realize that I?m not crazy, but I do find myself vaguely fearful for my sanity still today, and I am still very pre-occupied with the thought that other people will perceive me as such. According to Simeon, this isn?t necessarily uncommon:

_"(Some chronically depersonalized peoples?) robotic actions stem from inhibition ? a desire to act and appear normal for fear that bursts of creativity, eccentricities, or iconoclastic behavior might in fact by symptomatic of insanity or might reveal to others some kind of secret mental problem. As a result, many depersonalized people live more conservatively than they would otherwise" (131)._

Thus, I avoid people who use drugs of any sort these days, not because I disapprove of their actions, but because just being in that environment (pot smoke, in particular) makes my head swim; I instantly become highly derealized and panicky, regardless of whether I myself am smoking.

_"Depersonalization is likely to make people think they?re going insane. When it occurs after they?ve taken an illicit drug, they often think they?ve suffered brain damage. But unlike people with psychotic conditions like schizophrenia, they are not going insane at all. They are, if anything, suddenly overly aware of reality and existence and of the ways in which their own experience is a distortion of a ?normal? sense of a real self" (14)._

Reading back over these past few paragraphs, I have the feeling that I must sound crazy. That should give you an idea of how ceaselessly this rumination occurs; even when describing the anxiety created by appearing crazy to other people, the description itself makes me feel that I must seem crazy. Then again, the fear of appearing insane typically colors much that I do; my rational mind knows that I?m anything but crazy, but the fear of insanity seems to be an automatic, somehow unconscious response.

_What It?s Like Now _

It?s difficult for me to really gauge how much ?progress? I?ve made in the past few years. Sure, I?ve accomplished a lot externally in my day-to-day life; I won two scholarships that have paid for my entire U of I education, I am in my senior year, with a double major in Psychology & Religious Studies, and a 3.5 GPA. I?ve even been able to hold down a job at the public library, in addition to school, for the past year and a half. However, I mostly feel as though all of this has been accomplished by someone else. As is indicative of my DPD, I feel that I?m on ?auto-pilot? to such an extent that I don?t really feel responsible for what happens in my life. Words come out of my mouth or are written down, but I don?t know where the words come from. My mind generally feels blank, and everything I do still feels very tedious and automated. The world around me also feels, to a large extent, very automated and robotic. I have found that Sartre, in his classic novel Nausea, describes this tedium better than anyone else I?ve encountered:

_"I lean my hand on the seat and pull it back hurriedly: it exists. This thing I?m sitting on, leaning my hand on is called a seat. They made it purposefully for people to sit on?.I murmur: ?It?s a seat,? a little like an exorcism. But the words stay on my lips: it refuses to go and put itself on the thing?.It could just as well be a dead donkey?and I could be sitting on the donkey?s belly, my feet dangling in the clear water. Things are divorced from their names. They are there, grotesque, headstrong, gigantic and it seems ridiculous to call them seats or say anything at all about them: I am in the midst of things, nameless things. Alone, without words, defenseless, they surround me, are beneath me, behind me, above me. They demand nothing, they don?t impose themselves: they are there" (Sartre 125)._

Lately, I?ve come to understand more about this sense of automation and its relationship to my lack of emotion: ?When looked at objectively, without emotion or full participation, most human activities, from going to work, to religious ceremonies, to daily bodily functions, do seem strange, if not absurd? (Simeon 139). Cheryl, another DPD sufferer, explains the condition in a slightly different sense: ?An American flag, for instance. It?s instantly recognizable, and immediately means something to everyone. But if I look at it for more than a moment, I just see colors and shapes on a piece of cloth. It?s as if I?ve forgotten ever seeing the flag before, even though I?m still aware of what my ?normal? reaction should be? (7). My endless attempts at conceptualizing DPD have led me to the conclusion that it is largely a defense mechanism that prevents me from experiencing overwhelming pain. As a result of much painstaking research, I feel that this ?illness? of mine is a profound split between my body and mind that initially occurred during my first panic attack. Of course, most people experience a seamless connection between the two, and to think of the body and mind as separate is much different than actually experiencing them as fragmented. Most people in the general population do experience depersonalization and derealization as fleeting phenomenon during times of crisis. This is often seen in trauma survivors who don?t consciously remember experiencing the traumatic event; I believe this is because their mind briefly was dissociated from their body and its surroundings. In fact, interestingly, the symptoms of PTSD often overlap with those of DPD, and many PTSD sufferers have a lingering sense of depersonalization and derealization long after the traumatic event.

I typically don?t feel any emotions, be they positive, negative, or anywhere in between. The only times I typically do feel anything are at times when the anxiety and unreality become so overwhelming that I just cry out of sheer frustration and hopelessness. The way I see it, DPD has been my mind?s way of withdrawing from the body in order to avoid fully participating in life. Thus it is that I live a largely intellectualized life, void of the true emotional depth that makes a person ?human?. The term apathy ?marks the emotional deadness that is one of the hallmarks of depersonalized people. It is not a decision to be indifferent or unfeeling. It is automatic and unstoppable? (52).

I, however, will not accept that as the final word. I refuse to throw in the towel and accept this as my fate. In addition to studying DPD as a purely clinical condition, I have studied its philosophical and spiritual implications quite extensively. I believe that this condition, if studied exclusively within the framework of Western science, will never be fully understood. I consider myself a very spiritual person, despite the sense of disconnection I often feel from myself and the world around me. In fact, my spiritual orientation toward the world is largely what has gotten me through these past few years. As Viktor Frankl pointed out, the person who has a why can withstand almost any how. Lots of the time I feel as though I am without a soul, that I am already dead; but I also have a strong sense that all of this has developed in a specific way for a specific purpose, even if my mind isn?t capable of fathoming that purpose at this time. Without this faith that I have in life, I don?t believe I would have made it this far.

In an effort to become more in-tune with my body/emotions, and hopefully, in time, to mend this fragmented mind-body split, I have recently quit smoking cigarettes, and am actually watching my diet and exercising for the first time in ages. I plan to begin taking aikido classes at the Field House this winter, and am going to San Francisco in January for a workshop with one of the great pioneers in consciousness and mind/body research, Dr. Stanislav Grof. I am really looking forward to meeting Dr. Grof, as his books have been quite inspirational to me throughout much of this ordeal. Though I still have great trouble with my concentration and memory, I have learned ways of alleviating this to a certain degree. I still feel utterly lost lots of the time, but I have established certain practices that help me stay more grounded and present. I still find it difficult to stay interested in most things that used to give me joy, but I am convinced that this new way of perceiving the world, as painful as it sometimes is, holds much potential meaning. As Dr. Simeon points out in the final chapter of Feeling Unreal, ?the end result may be a new, and perhaps better self than the one that had existed previously. For the patient, this ?new self? may indeed be ?more real? than his old compromises were, however comfortable and familiar those might have felt? (200).

Works Cited

Sartre, J.P. Nausea. New York: New Directions Publishing Corp., 1962

Simeon, Daphne. Feeling Unreal. New York: Oxford UP, 2006.

As for what has helped me, I can provide a few brief suggestions:

-reading Dr. Simeon's book thoroughly and really putting its advice
into practice is crucial
-simplifying your life - I've found that reducing the clutter around
my apartment and following a fairly regular daily routine helps to
keep my mind clear and more focused.. getting rid of all the
unnecessary baggage in your life allows room for new, better things to
emerge
-finding a good psychiatrist and sharing Dr. Simeon's work with him or
her.. lots of psychiatrists and therapists arent well-versed in dp/dr,
so you have to be your own advocate, share what you have learned, and
encourage your doctor to read Dr. Simeon's book/research
-medication is a touchy subject, and I have done my best to avoid it
until recently. However, I have found that a low dose of Klonopin
really helps keep my panic at bay, and thus reduces my DP/DR
substantially
-exercise is very important, whether it be more somatically-based
(yoga, tai chi, etc.) or more strenuous physical activity such as
running and biking.
-staying busy and focusing outward is crucial. Removing yourself from
the outside world is detrimental for dp/dr, because it allows you too
much time to ruminate and make things worse (cliched as it may sound,
idle hands are the devil's playground, you know). In order to really
overcome this, we need to face the world head-on and take some risks.
I know that this condition makes us feel incapable of functioning in
the world sometimes. However, if we take a leap of faith and just do
things, even when we don't want to, the mind has a way of escaping the
thoughts that manifest as dp/dr and we begin to feel more alive.
-BE PATIENT- i know how excruciatingly tedious this all can be, but
there is hope. I have found that patience is so important - we may not
have all the answers now, but we can still live our lives. It's about
the journey, not the destination. The answers will come in due time if
we are patient and open-minded.

This is a fairly brief list, just off the top of my head, and I will
let you know when more tips/pointers come to mind. I hope this is at
least somewhat helpful. Let me know what you think, and take care everyone. We're all in this together.


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## Guest (Jan 16, 2007)

I really enjoyed reading your essay. Very well expressed. I understand so well what you mean about fearing that your friends will "find you out". 
I wish you luck and hope that you'll be able to recover joy again.


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## devil121 (Mar 2, 2007)

My friend after reading your story I think you are one the same boat where I had being few years ago. Many people how naver had faced this can?t understand this feeling. It?s more like unfocused feelings of disorientation. It's something like living in a foggy or dream state. When this happens, it feels like you're not in your own body. Does anyone know how to help this symptom?


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