"Death is not the greatest loss in life. The greatest loss is what dies inside us while we live." - Norman Cousins -

At some point in my early teens I started using a scale to measure the severity of my DP/DR symptoms. I used a spectrum of 0% to 100% -- 0% being completely depersonalized/derealized to the point of having disappeared completely from reality, and 100% being normal or 100% in the real world. I was last 100% in the real world, most of the time, around the age of 11. In retrospect, I know I suffered "feeling odd" on and off throughout my childhood; during these times I avoided social activities or sometimes dreaded them. I firmly believe now I was experiencing episodic DP and DR that was "uncomfortable" at minimum. This measuring-stick still frightens me as when I think I have hit rock bottom I will often find there is a level further down the scale -- this has occurred over a span of 30+ years. I cannot contemplate where these serious dips fit on my scale and really don't care to speculate. Fortunately these "drops into Hell" or "into The Black Pit" (as described in The Bell Jar) have lessened considerably with medication, therapy, coping skills, and time. Presently I would say that I am about 65% "here" most of the time, 24 hours a day, 7 days a week, even in my dreams. That is a tremendous improvement from levels of what I would guess were 30-55% "here" as an adolescent and young adult. I am often amazed by what I accomplished in those early years, but I was young and strong and hopeful then and had very specific dreams and goals that made me fight harder than I have been able to as an adult. What is frustrating is that any form of pressure or stress, which now can be as simple as going out with a friend, causes a significant increase in my depersonalization and derealization, and it is often difficult to determine which came first -- anticipatory anxiety or severe and intrusive existential thinking. My DP and DR seem to increase or decrease in tandem, so it is difficult for me to really separate the level of DR/DR -- they generally are one and the same.

Distinguishing Between Depersonalization and Derealization I suffer from both DP and DR. Others describe suffering from one or the other or with some fluctuation between the two. In simplest terms the difference between DP and DR are as follows: Depersonalization - A distortion in how one's own body and Self feel. Derealization - A distortion in how the external world is perceived.

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Over the years I have used an endless number of metaphors and analogies to explain my DP and DR to doctors, family, and friends. For someone who has never experienced these feelings they are almost impossible to understand. My mother of course knew exactly what I was talking about though she would not tell me what it is, or allow me to get help. I often pose the following questions to a healthy person who has not experienced chronic DP or DR: "Have you ever experienced deja vu?" The response if often "Yes" and is described as an uncomfortable fleeting shift in perception, somewhat odd, but not troubling. I then ask, "Imagine if an experience like deja vu never went a way, if it came on with an intensity 100 times greater that what you have ever experienced, if that perceptual shift remained for the rest of your life?" Most healthy people have some minimal grasp of that concept and agree that at minimum it might be "disturbing" if it persisted. Unfortunately, most healthy people have absolutely no clue what I am talking about.

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In terms of Depersonalization, the actual physical changes in the way my body feels, I attempt to describe these perceptual distortions as follows. I never believe this is how I am feeling, I know I shouldn't be feeling this way, and it is terrifying to me.

I have obsessive thoughts about my existence; who am I? why am I here? what is this "lump of flesh" that is "Me"? Another DP sufferer once described this very well as a "stinging existential angst." But this is not a philosophical, intellectual exercise (such as a Sartre-like discussion re: the nature of "being"). This is endless questioning about the nature of my very existence, and the thoughts seem to come in tandem with my perceptual distortions. I can't say the thoughts can be separated from the actual physical experience of depersonalization, but if I dwell on these thoughts and focus too much on my body, my symptoms of DP can increase and become unbearable. Sometimes I really don't know what comes first -- the thoughts, the perceptual distortions, or the anxiety; I can't answer that with certainty either. I feel at all times that I am dreaming, or more specifically that I am half-awake, incapable of pulling myself into reality. When interacting with others, I feel as though they are on the other side of an invisible barrier or pane of glass. I feel I can't connect with them, not 100%, though I hear, see, and understand what they are doing and saying. And I of course appear "perfectly fine" and "normal" to those interacting with me. I feel as though my Self has "pulled back into my body," that my Self does not "fill me out to my skin." I literally feel that when touching something, I can feel it, yet feel it from a distance as I am removed from myself, or stuck too far inside myself. Note, at no time do I actually believe these feelings are real. I know I shouldn't feel the way I do; I want these horrible sensations to go away. In psychiatric terminology my "reality testing is intact," I have "insight" into what's happening to me and I know it shouldn't be happening. I am not delusional or psychotic in any way. I also use the metaphor of "Static on a Radio." When moving from station to station on a radio, one moves from the complete clarity of one station into static. Then as the dial turns, a new station comes in, first garbled then finally clear. I liken my presence of Self "in the world" as moving away from the clear station, further and further into the static. I am "less here," just as the clear radio station disintegrates into garbled static. I also describe this loss of Self as my "Xerox Metaphor." Take an original document and Xerox it. Take the Xerox of the document and Xerox that. Continue to Xerox each Xerox. The original document slowly fades away. This is how I feel my Self fading away. My arms often feel they are not attached to my body, as though they are not mine. It is as though I have phantom limbs that I can see. This is most disconcerting as one's arms and hands are so crucial to so many daily activities. This sensation waxes and wanes and is exacerbated by various kinds of stress. I frequently feel certain areas of my body are "numb" or have "gone to sleep." Everyone is familiar with sitting on one's foot, cutting off the circulation and having it "fall asleep." I have somewhat similar sensations that occur mostly on my right side, on my cheek and on my arm -- but again I don't believe these parts of my body have actually gone numb. The numbness feels as though it only reaches down about a few millimeters into my skin. I will sometimes rub these areas to "wake them up" knowing very well this is again some irritating somatic symptom I have no control over though I know I shouldn't feel that way. When my DP is at it's worst, I don't want to move as it feels so odd, my body is not mine, I actually can't feel my body, it feels nonexistent -- it is though I am "merely a pair of eyes" and nothing more. I talk in a whisper as I feel my voice is not mine. The world presses against my face and my face has a burning sensation. I feel as though I am only a thought -- the only thought in existence. The world exists only in my own mind. I keep asking, "Who am I? Why am I here?" Though my "reality testing" is always intact; if someone asked me my name, where I was, what year it was, etc., I would be able to answer those questions. I haven't "lost my mind," I have "lost my sense of Self." I can also equate this horrible feeling with being an astronaut, floating in space, only in a spacesuit. There is a visor in my helmet, but there are no stars, no light at all, only darkness, I can see nothing. So all "I" am again, is "existence" -- in nothingness. My depersonalization usually remains at a relatively constant level. However, under stress I experience serious dips in my sense of being in the world. Sometimes the stress is obvious such as preparing a presentation or even getting ready for a party or meeting with a friend for lunch. At other times there is no apparent stressor. The DP (and the DR) will come over me in a wave and I will fall into a "lesser" reality. Perhaps my best, most dramatic, analogy would be as follows: Imagine having a stroke where you have lost all of your physical senses. You are completely paralyzed. You are blind, deaf, and cannot speak. You cannot feel your body -- at all; should someone touch you, you would not be aware of it. You cannot move (and even if you could you would have no point of reference as to where to move or how). You are being kept alive by the most advanced medical care you pray would be terminated -- but you cannot communicate in any way. And you are fully aware that you "exist" -- you only exist. You are conscious. Your mind is still working. You can think. You are perfectly sane. You are simply thought, trapped in a vessel. This is how I feel in my most horrible moments, fully aware that I should not feel this way. I can understand why someone would seek pain (with cutting -- though I do not do this) to find some sense of ... anything ... actual proof that one is alive. These experiences convince me that this is clearly a neurological event of some type -- some miscommunication in the brain which provides us with a sense of "Self".

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The concept of Derealization has to do with how the outside world appears to me.

The world looks two-dimensional and flat. Objects seem to have no existence separate from my thoughts, they are illusions and are pressed up against my eyes. If I reach out to touch something it seems farther away or closer than it should be. It is as though there is a filter over my eyes that makes colors less vibrant and makes everything seem darker or dimmer. This sensation is always worse in daylight. On a bright sunny day, it seems there is too much input, too much stimuli from everywhere and for that reason my brain "shuts down" and is unable to take any more input. I wear sunglasses outdoors which seem to help somewhat. I can easily become disoriented in crowds -- again, too much input. I may lose my sense of direction even in familiar surroundings. People and even my pets become merely sound and motion, merely the products of my own mind, though I know they are not. This separation from human contact is excruciatingly isolating. With overstimulation, say in a bustling office-setting, I "can't see what I'm doing." I can see what is in my field of vision and hear what is happening but the input becomes scattered in my head -- the incoming visual and aural stimuli become scrambled. It is like seeing the world reflected back at me in pieces of a broken mirror. Things look fragmented, just sound and motion, and I seem incapable of seeing the whole. I "can't see the forest for the trees" and this is terribly frightening and immobilizing. I recently noted that some of artist David Hockney's "photographic collages" evoke this scrambling of input. One of his famous works,"Pearblossom Highway" reminds me of this frightening experience. But Hockney's vision must be multiplied at least one-hundred fold to capture the true disintegration of visual input I can experience. (Click on the link and Pearblossom Highway will open in a new window.) My derealization and depersonalization levels seem to be in synch with one another, that is they seem to be one disorder. There are others however who feel only DP or only DR, not both, and that is a difficult concept for me to understand. It is extremely difficult to articulate these sensations to someone who has never experienced them, though many people experience them briefly at some time in their lives only for fleeting periods of time, like deja vu. My DP and DR are constant and this is what makes them so frightening and disabling. I have had these feelings for so long they are almost a part of me, but this does not make them easier to live with; every day I hope for a cure, a miracle that these feelings will disappear.

I have a myriad of other symptoms that would fall under the definition of GAD, Generalized Anxiety Disorder. I have also had Panic Attacks, moreso in my youth, which include "feelings of unreality" -- depersonalization and derealization. Click on the Merck Manual link below (Section 15, Chapter 196) for a general description of GAD; this will open in another window: Discussion of Anxiety Disorders in General and GAD in Particular

Here are the symptoms of Generalized Anxiety Disorder and Panic Attacks from the DSM-IV. I have every one of them, or have at one time or another. These symptoms likewise wax and wane in severity.

Generalized Anxiety Disorder Excessive anxiety and worry (apprehensive expectation), occurring more days than not for at least 6 months, about a number of events or activities (such as work or school performance). The person finds it difficult to control the worry. The anxiety and worry are associated with three (or more) of the following six symptoms (with at least some symptoms present for more days than not for the past 6 months). NOTE: only one item is required in children. - restlessness or feeling keyed up or on edge - being easily fatigued - difficulty concentrating or mind going blank - irritability - muscle tension - sleep disturbance (difficulty falling asleep, or restless unsatisfying sleep) The focus of the anxiety and worry is not confined to features of an Axis I disorder, e.g. the anxiety or worry is not about having a Panic Attack (as in Panic Disorder), being embarrassed in public (as in Social Phobia), being contaminated (as in Obsessive-Compulsive Disorder), being away from home or close relatives (as in Separation Anxiety Disorder), gaining weight (as in Anorexia Nervosa), having multiple physical complaints (as in Somatization Disorder), or having a serious illness (as in Hypochondriasis), and the anxiety and worry do not occur exclusively during Post Traumatic Stress Disorder. The anxiety, worry, or physical symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. The disturbance is not due to the direct physiological effects of a substance (e.g. drug of abuse, medication) or a general medical condition (e.g. hyperthyroidism) and does not occur exclusively during a Mood Disorder, a Psychotic Disorder, or a Pervasive Developmental Disorder.

When I first read this summary of GAD (probably in my late 30's after a psychiatrist mentioned this might be a more proper diagnosis) I was stunned to find that I literally fit every single criteria. I get angry when certain friends and family have said to me, "well if you read this all the time, you will start believing you have it." This truly infuriates me as I had these symptoms as a child -- long before I had any access to such information. That is a stinging insult and is often directed at all individuals with mental illness.

Criteria For A Panic Attack (These symptoms can manifest themselves as a chronic condition.) A discrete period of intense fear or discomfort, in which four or more of the following symptoms developed abruptly and reached a peak within 10 minutes. palpitations, pounding heart, or accelerated heart rate sweating trembling or shaking sensations of shortness of breath or smothering feeling of choking chest pain or discomfort nausea or abdominal distress feeling dizzy, unsteady, lightheaded, or faint dearealization (feelings of unreality) or depersonalization (being detached from oneself) - my emphasis fear of losing control or going crazy fear of dying paresthesias (numbness or tingling sensations) chills or hot flushes

To see this list is to read what I fought regularly from about sixth through twelfth grade. I have no idea how I managed to function as well as I did but GAD and panic affected every aspect of my life at the time. My schoolwork suffered greatly. What held me together, as noted many times, was the security of my private school and my lifelong passion for the Arts. I wish I had been able to reach out for help but I feared my mother's retaliation -- her endless threats to remove me from this special environment which I believe preserved any quality of life I had or have today.

I distract myself from other odd sensations related to depersonalization (hundreds of times a day) such as feelings that there is only darkness behind me -- a void. I also feel that I could simply "disappear" at any moment, that I have to "hold myself here" in the world. I feel sometimes as if I were merely a candle flame, so insubstantial I could be snuffed out. My perception of Self is often that fragile. This disconnectedness at times affects my concentration on the most mundane tasks. Reading is sometimes difficult. Now and then I can't focus on a simple television show. This has improved over time, but in the past it seriously affected my school-work as well as activities in any work environment. I know these thoughts are not logical, they are not normal, they feel like a physical, medical disorder, and I have insight into them. But the feelings are very real to me, the fears are very real; the discomfort is very real and saps the joy out of life. The constant anxiety is exhausting and is certainly a cause for feeling depressed and hopeless.

"...There is no pain, you are receding A distant ship's smoke on the horizon You are only coming through in waves Your lips move, but I can't hear what you're saying -- When I was a child, I had a fever My hands felt just like two balloons Now I've got that fever once again, I cannot explain, you would not understand This is not how I am I ... have become, comfortably numb... ... When I was child I caught a fleeting glimpse Out of the corner of my eye I turned to look but it was gone I cannot put my finger on it now The child is grown, the dream is gone I ... have become, comfortably numb." - Pink Floyd - From the album "The Wall" Many have mentioned to me -- and I agree -- that the lyrics should actually read, "I have become uncomfortably numb." But I have always been touched by this song and felt it expressed my feelings of emotional isolation and the loss of childhood dreams (and adult goals) to mental illness.

Just me, still here. 2007.

Two more analogies: The Man Who Mistook His Wife For a Hat by Oliver Sacks, M.D. See Chapter 3: "The Disembodied Lady" who suffers from a loss of proprioception. Johnny Got His Gun by Dalton Trumbo Not for the faint of heart. The protagonist has suffered massive and hideous war injuries. He is merely a torso without legs or arms. He cannot see, hear, smell, or speak. His only means of communication is to bang his head against his hospital pillow. His mind is completely intact, he is completely sane, and yet he is merely "thought" trapped inside a mutilated vessel. His total isolation always reminds me of the horrible isolation of depersonalization. How could he not ask after a time, "What is this lump of flesh that I am? Am I alive or dead? Am I merely existence itself?" This is a variation on my stroke analogy above.

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© Sandy Gale, 2000-2008 The Pear Blossom Project

April 17, 2008