Crying Is As Good As It Gets by J.A.M
Unfortunately, I am still suffering from unremitting major depression and chronic depersonalisation, despite excellent care. I am 44 years old now. This disabling illness has persisted for over five and a half years, since May 1995. My condition is not recurrent major depression (thus far); it is one, continuous episode of major depression with chronic depersonalisation.
I don’t want to sound overwhelmingly discouraging to people who are looking for hope. Please remember that when I describe something that didn’t work for me, that doesn’t mean it won’t work for you. Everybody is different.
BRIEF PSYCHIATRIC BACKGROUND
Prior to age 39, my life was 99.9% free of mental illness symptoms. I had an easy childhood and never experienced any trauma. However, I did experience several episodes of depersonalisation throughout childhood and during my first year of college.
My very first depersonalisation experiences occurred when exiting movie theatres at age 10. None of the movies I watched were traumatic, but I guess watching movies put me into a trance that triggered depersonalisation. Later, when I was in the high school marching band, playing the drums, depersonalisation would hit me while I was performing at football games. When it would hit me, it had a retroactive feel to it, as if it had already been there before I noticed it, and noticing it was quite a jolt. I called this depersonalisation the “Not There Feeling” because I felt as if I didn’t exist.
Fortunately, these episodes lasted only several hours at the most. The depersonalisation was always gone by the next morning. I distinctly remember waking up, and thinking, “Oh, it’s gone!” and going about my day as if it never happened.
I also experienced whiffs of a different kind of depersonalisation, which I called the “Strangeness Feeling”. This was similar to when you look at a familiar word, and it no longer looks familiar, and its correct spelling looks wrong. But this strangeness was about myself, not a word.
I’m still seeing the same cutting edge biological psychiatrist, Lewis Engel, M.D. (whom I previously referred to as a psychopharmacologist), here in the San Fernando Valley of Los Angeles. I’ve gotten many second opinions, and I’ve read a great deal of psychiatric literature. I am certain that no other doctor could do a better job than Dr. Engel and there is no point in changing. Furthermore, Dr. Engel has a great deal of respect among the local psychiatric community; once another highly regarded psychiatrist admitted, “I would not be able to do any better than Dr. Engel.”
Since I started seeing Dr. Engel in September 1995, we have tried about thirty psychotropic drugs, in miscellaneous combinations and at very high dosages, all with virtually no beneficial effect. The only drugs that did anything at all in a beneficial direction were the monoamine oxidase inhibitors (MAOIs). But the effect was pretty pathetic as far as I was concerned. There was a minor improvement with the depression, but no beneficial effect on the depersonalisation. I felt ever so slightly more motivated, but did not feel like myself being motivated because of the depersonalisation. Plus, I was still crying profusely, my motivation was still infinitesimal compared to how it used to be before my illness started, and I still felt like I didn’t want to live if I had to live feeling the way I felt. Obviously, I was not only still suffering from the depersonalisation; I was still very depressed. (Note: when I experienced orthostatic hypotension, a side effect of the MAOIs, the depersonalisation was intensely increased above its usual baseline level.)
I am still seeing a wonderful therapist, Steven J. Nelson, Ph.D. Thankfully, he agrees with me that it is not possible to get at the root of my illness by “working through” problems such as “unresolved conflicts”, “issues”, or “repressed memories.” Psychodynamic interpretation of my symptoms is not helpful. And while certain psychosocial factors played a role in triggering my illness — which I recognised since my illness started, — neither of us believe it is necessary to go over those factors any more than I already have in therapy. I’m not dwelling on the past; the past seems to be all okay now. He believes, like me, that my condition requires either a successful biological treatment, or a spontaneous remission. (He says he is following his intuition about this.) Thank God, because it can be intensely difficult to undergo standard psychoanalytically oriented psychotherapy when in the midst of major depression; it is in my case, especially considering medication provides no relief.
It may be all well and good for psychotherapists to convey that no feelings are too trivial, that all feelings are significant and should be expressed and talked about. But if obtrusive, psychopathological symptoms that one desperately needs relief from continue to persist, I have to say “so what?” about those feelings.
I have also tried both unilateral (in 1996) and bilateral (in early 2000) electroconvulsive therapy (ECT). Unilateral ECT was ineffective. After undergoing the bilateral ECT treatments, at Cedars-Sinai hospital in Los Angeles, my depression was improved by about 10% or 20%. But I experienced no reduction in chronic depersonalisation.
Many people said, “You seem so much better!” after the bilateral ECT treatment. But I found the juxtaposition of appearing to be better on the outside while still feeling overwhelming strangeness on the inside to be very creepy and scary. It made the depersonalisation feel all the more irreversible. And now I feel that I am back where I was before the ECT, because neither me nor the doctor felt maintenance ECT was advisable.
Following the bilateral ECT, I was put in an intensive Partial Hospitalisation Program at Thalians Mental Health Centre (part of Cedars-Sinai Medical Centre) for about eight weeks, involving cognitive therapy, group therapy, art therapy, etc. The program was educational, and the mental health workers were sincere, caring, and very skilled. But I did not experience any further reduction in symptoms since the ECT. In fact, the program was extremely stressful and difficult to complete because of the lack of significant relief from ongoing symptoms. Two and one half weeks after finishing the ECT treatment, while in this hospital program, I started experiencing spells of such intensified depersonalisation, significantly above its chronic baseline level, that I felt it was worse than ever.
Here’s a review of my symptoms:
MAJOR DEPRESSIVE SYMPTOMS
Psychic pain – I think it is common for people to describe depression as a form of pain that is more severe than physical pain. I feel that I am suffering from psychic pain that is similar to the suffocating state described in Darkness Visible by William Styron. Often it is so severe that I feel I can’t go on living for another five minutes. (Note: Although Styron described a brutal depression, he did not describe depersonalisation in my opinion.)
Fear, anxiety, panic – I will often feel paralysed with fear. Even when I am doing something, therefore obviously not really paralysed, I will still feel paralysed with fear. This fear is not a fear of anything in particular; it’s fear that is an integral part of the altered state of consciousness that I am stuck in. Even when the fear is not so powerful, there is still a chronic, subtle fear in the background. And panic occurs along with a rise in the intensity of the depersonalisation.
Sleep disturbance – My sleep is broken into pieces, with as many as six or eight spontaneous awakenings during the night. Early morning awakening almost always occurs. I sleep too much, ten to fourteen hours per days, but that is a welcome symptom in order to escape the pain. A nurse who seemed to understand depression once told me that I am lucky to have hypersomnia rather than insomnia.
Suicidal ideation – My mind goes back and forth and back and forth between suicidal ideation and hopefulness for recovery. The idea of suicide seems logical, because I want to escape the pain. I never think, “There’s nothing I want to live for”, unlike many people with depression. But I need relief from this illness, and suicide seems to be the only solution. This persists on a daily basis. Fortunately, I am not impulsively suicidal, and I maintain a healthy aversion to doing anything violent towards myself.
Lack of motivation – Everything and anything feels extremely difficult to do. I have groceries delivered, but even giving the grocery order over the phone feels difficult. I can manage only one small errand per day (i.e., buying something at the pharmacy, going to a bank teller machine, etc.) At first, I thought that this increased perception of effort was because I didn’t want to deal with the depersonalisation. Later, I came to decide that it is so pervasive and powerful that it is definitely a depressive symptom in its own right, not simply a psychological reaction to the depersonalisation.
Crying spells – Crying used to be almost daily, sometimes for two hours long, and so loud that I thought it could be heard down the block. My crying spells are no longer as robust, and I don’t like that because crying is the only symptom (along with sleeping too much) that I welcome while I feel this way. Crying is the only tranquilliser that works in my case. (Other people with mental illness told me that I am lucky to be able to cry.) During crying, I feel sadness, which feels like a normal emotion compared to everything else, and that’s as good as it gets. The depersonalisation makes the past (a good past, in my case) feel as if didn’t happen to me, but crying helps. Lack of crying makes me feel more distant from precious, sentimental memories, memories of myself during years without depersonalisation.
Anhedonia (inability to experience pleasure) – No mood reactivity exists whatsoever, in my case. If I do laugh or smile for a few seconds, the depersonalisation gets in the way; I do not feel like myself laughing or smiling, and that is a creepy feeling.
Rumination – I do not ruminate much about life events that occurred prior to my illness. In fact, I feel that my life was basically okay. However, I constantly ruminate about the inability of other people to comprehend how much I am suffering, as well as innocent comments made by other people. Even comments made by people who suffer from mental illness sometimes get to me, causing me to ruminate. For example, I’ve met many people with bipolar illness whom I really feel don’t understand depersonalisation.
Guilt – I feel very guilty that I cannot function better. I feel guilty that I cannot help myself with cognitive therapy or cognitive-behavioural therapy. But I don’t really believe I should feel guilty about these things.
Impaired concentration – My concentration is somewhat impaired, but perhaps not as severely as it is with some people with depression. I am reading heavily. But my reading is limited to stuff that gives me hope. I am not reading what I would be reading if I felt good. But I am suffering so much that I feel that I need to be thankful that I can read at all. I know it works for me to help me get through the day.
NO feeling of worthlessness – Feeling worthless if usually at the top of a list of symptoms of clinical depression. In my case, however, I do not feel worthless. In fact, I promptly stopped ruthlessly self-criticising myself when my illness started because the things I used to criticise myself about became relatively unimportant in comparison to how much I am suffering now. The trouble is, this lack of feeling worthless makes me feel that I have a terminally unique type of depression.
NO loss of appetite – I do not enjoy food, and it often tastes bland. Fortunately, I do get hungry and I eat fairly well to fill my stomach.
NO diurnal variation – I’ve never noticed any correlation between how I feel and the time of day.
CHRONIC DEPERSONALISATION SYMPTOMS
I feel as if I suffer from two types of depersonalisation. Both involve my perception of self and my perception of the environment. Therefore, both types involve both depersonalisation and derealisation. (I’d really like to know if anyone relates to having two different types of depersonalisation like this). Both are similar to the two types I experienced during childhood, but much worse now:
One type: A chronic feeling of unreality…an absence of a sense of being, and an absence of a sense of presence of the environment…the feeling of being an automaton…an absence of a sense that whatever is happening at the moment (all moments) is actually happening…feeling as if I am stuck in a different dimension…loss of the self/other boundary; I do not feel as if I am an individual entity separate from the environment.
The other type: A chronic feeling of stinging strangeness regarding my self and regarding the whole external world…the feeling that my own identity is a stranger when I self reflect (but please don’t confuse that with an identity crisis)…the feeling that I am outside myself watching myself…stabs of strangeness regarding particular features of the environment or of the nature of the whole world…the feeling that I am an alien inside my body, and that the whole planet is alien.
In addition to the baseline level of chronic depersonalisation, I will often experience sudden attacks of even more intense depersonalisation with panic. It is as if I have double depersonalisation during such attacks — the baseline, chronic depersonalisation, which is brutal enough by itself — and an even more intense depersonalisation with panic.
For example, the depersonalisation is very psychosensorial, and will often suddenly react to changes in stimuli (i.e., a cloud covering the sun, movement on a television screen, etc.)
Also, confusion, such as not knowing where I am in relation to the exit while in a store, can cause the depersonalisation to skyrocket. Panic will usually accompany this experience.
Some of this may sound like panic disorder. But I NEVER experience other symptoms of panic attacks, such as breathing difficulty, sweating, heart palpitations, or dizziness. The depersonalisation is definitely more central to whatever is going on in my brain, rather than secondary to panic attacks as in panic disorder. And I NEVER feel that “I am going to die,” as panic attack sufferers often do. Instead, I think about needing to figure out how to kill myself, in order to relieve the suffering, as depression sufferers do.
I think thoughts like, “Neuroscience will never be able explain this. This subjective experience is as mysterious and difficult to explain as consciousness itself.”
Looking in the mirror is intensely difficult, and I’ve developed a habit of avoiding it. The stinging strangeness is usually intensified by seeing my reflection. (At the same time, I do not dislike how I look. If I manage to look, I usually think, “Hey, I don’t look bad, considering how I feel.”) Being so uncomfortable looking in the mirror is a yardstick of how badly I am still doing. (I never used to have a problem looking at my own image before my illness started.)
I like this description of depersonalisation from 1935: “…the disorder occurs due to a disorder of memory in the sense of a loss of familiarity with one’s past self.” Meyer-Gross, 1935, page 109, from British Journal of Medical Science 15, 103-126. The strangeness involves a loss of familiarity with my past self.
MAJOR DEPRESSION OR DEPERSONALISATION DISORDER?
When Dr. Engel started trying to treat me in 1995, he felt that my condition is primarily major depression, and that proper medication would treat both the depression and the depersonalisation. I think he provided good talk support; if medication had worked right away, it would not have been necessary to see a therapist in addition to him. But I was always complaining about the depersonalisation, and was extremely worried that even if the depression went away, the depersonalisation would not.
There’s something about the depersonalisation that tricks one into thinking it can’t go away — more so than depression, I think. It feels as if everyone else in the world must be hallucinating a sense of reality and individuality, and that I must have been hallucinating such before my illness started. It is as if I know from direct experience something about consciousness and the universe that other people are too busy to notice. It feels as if the sense of unreality and strangeness are the true nature of the universe, albeit intensely painful; it feels as if it is the truth and therefore, how can I unlearn the truth?
Anyway, Dr. Engel was constantly trying to give me hope by downplaying the significance of the depersonalisation because of how worried I was about it, and emphasising that I had a treatable depression. So when I previously wrote an account, I was feeling somewhat apologetic for dwelling on the depersonalisation, and was trying to believe my condition is primarily major depression — a way of defining my condition that always seems less threatening to me.
I’m not saying that depersonalisation is not treatable in some cases. My condition may be treatment resistant for reasons other than the presence of the depersonalisation. But I am saying that the depersonalisation is always more scary to me than the depression. And at this point, though I agree with the diagnosis of major depression, I continue to worry that even if the depression went away, the depersonalisation will not. What happened when I took the MAOIs and when I received the bilateral ECT only served to reinforce this worry.
DOES THINKING ABOUT THE DEPERSONALISATION CAUSE IT?
For a long time, I worried that thinking about the depersonalisation causes it. I worried that the only reason that I didn’t experience depersonalisation for twenty years of adult life is that I forgot about it and didn’t think about it.
This worry influenced my dreams. Often, the feeling of unreality hits me during a dream. Sometimes, I would dream that I was going about my business as if the feeling of unreality was not a major concern. However, as soon as I would check for it, I would discover that the dreaded feeling of unreality was indeed present, and it would feel as if it had already been there.
Now, to some, this may seem like good news because it seems to indicate that the road to recovery is forgetting about the depersonalisation. But no, I couldn’t look at it that way. Instead, I worried that even if I felt better, any slight reminder of it would bring it back. For example, a friend asking, “How’s the depersonalisation?” would cause it to happen again. I worried that doing something as common as remembering my name would bring on the strangeness. I thought that I would have to go about my life frantically telling myself, “Oh, I better not think of who I am! I better not think of my name!” That’s certainly no way to live. I thought the only way to totally escape the depersonalisation would be to literally have amnesia that it ever occurred.
When my illness first started, I tried to get people to understand the strangeness by asking them, “What would happen to you if you stared in the mirror and repeated your name fifty times?” I thought that such activity would bring on the strangeness in anyone. Now I realise that is not the case, and asking this question does not bring people to an understanding.
I looked for proof that during my history, I thought about the depersonalisation without actually experiencing it. Yes! At least a couple of times during those twenty years of adult life without depersonalisation, I did mention it to someone, and that did not cause it to happen. That’s the proof I need.
I no longer believe that thinking about the depersonalisation causes it, at least in my case. Dr. Nelson has helped me understand this; he believes that when you are truly no longer suffering from depersonalisation, it is almost as difficult to conceive of it as it is for someone who has never experienced it. I think he’s right. (Note: dwelling on producing this document does not make it worse.)
PROBLEMS WITH COGNITIVE THERAPY FOR DEPRESSION
Cognitive therapy for depression is supposed to involve modifying distorted thinking, and apparently in some cases that makes people feel better. Such distorted thinking involves dysfunctional beliefs that can be changed. Well, I have dysfunctional feelings, typical of depression, that at the same time I don’t actually believe. For example, I’ll feel guilty about something even though right away I know the guilt is not warranted. These immediate adaptive beliefs do nothing to relieve the painful feelings that I experience.
Furthermore, and more importantly, these dysfunctional feelings seem very superficial, very secondary to much deeper, unremitting psychic pain and chronic depersonalisation. The deeper psychic pain does not consist of thoughts about anything at all. Instead, it is an ongoing sensation of pure, distilled pain that does not react to my beliefs about anything. For example, it will persist even if I realise I don’t need or want to feel guilty about something. Whatever the physiological basis for this psychic pain, it seems to have no plasticity to it.
Ironically, my self-esteem improved when my illness started. All of the things I used to be unhappy about, regarding myself and external circumstances, immediately became very trivial compared to the excruciating altered state of consciousness I found myself stuck in. Immediately, I found myself thinking if only I could feel as good as I did before this illness started, I would have a newfound appreciation of myself and of life, simply because it would be such a relief in comparison. But none of this thinking relieves the psychic pain and chronic depersonalisation. It seems to me that cognitive therapy is based on the premise that things don’t happen this way when someone develops depression.
I’ve had lots of time to think since this illness started. I believe that I have reinterpreted many past experiences — done “cognitive restructuring” so to speak — in a favourable, adaptive manner. I put myself down a lot less that I did before my illness started; ruthless self-criticism has stopped. I no longer believe the feelings of inadequacy, the feelings of being deprived, that I used to experience, are necessary. But none of this changes my current suffering.
In fact, I have an issue with cognitive therapy. I find it insulting. Perhaps I need cognitive therapy to help me with that! But if you blame yourself when the sun doesn’t shine, then I can see how cognitive therapy is for you.
PROBLEMS WITH COGNITIVE-BEHAVIORAL THERAPY FOR ANXIETY SYMPTOMS
Cognitive-behavioural therapy for anxiety usually involves desensitising oneself to something that is feared. In my case, though anxiety is an integral component of the chronic depersonalisation, there is nothing in particular for me to desensitise myself to. In my case, I would have to desensitise myself to who I am, which is a person who is stuck in a state of chronic depersonalisation. For me, the painful strangeness of my own being is a chronic altered state of consciousness. No matter what I do, I don’t feel like myself doing it, and that strangeness about my own being persists. This lack of feeling like myself doing whatever I am doing, this persisting stinging strangeness, is extremely painful in itself, for some unknown reason.
Apparently, when someone with panic disorder does something that is difficult to do because of the panic, or someone with OCD resists the urge to perform a ritual, those individuals are often able to experience a sense of reward, and a sense of being who they are having accomplished whatever they have accomplished. With me, the absence of a sense of being remains extremely obtrusive during and after I accomplish something that is difficult to do. If I do something that is difficult to do, there is no sense of reward, no sense of being myself having accomplished whatever I accomplished. I’m serious about this.
Mental health workers have advised that I’d be better off if I don’t stay in my own world, better off if I engage in activity in order to distract myself from obsessing about my illness. To me, this shows a total lack of understanding about the obtrusiveness, pervasiveness, and painfulness of the stinging strangeness of my own being and of the external world. For example, interacting with a friend has the potential to amplify the strangeness of my own self because that activity may remind me of how much I don’t feel like myself interacting with that friend. It’s sort of as if the strangeness will bounce off of my friend and attack my own consciousness. Certainly, such activity doesn’t distract me from my problem.
I fantasise about how wonderful it would be to be able to enjoy something as simple as sightseeing here in Los Angeles, or to be able to walk down the street feeling normal. Or even to be able to take out the garbage feeling normal.
I am able to accept the life this illness has stolen from me up to now. But I am not able to accept continuing to live with the symptoms. I need relief.