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From Hope to Disappointment on Being Diagnosed With DPD

Relief after the diagnosis of depersonalization has finally been made.

This blog entry is part 2 of the series "'I' and My Depersonalization."

The day your awful, mysterious “malady of unreality and a lost self” receives a diagnosis often lightens up with relief, hope and promise. The spell of the unknown has finally been broken. That frightening IT, that undermined the very sense of your own self, now has a name — depersonalization. You remember this uplifting feeling of recognition. You are listening to your doctor defining depersonalization, or your eyes are running along the lines describing it, and you experience that ease of identification: “This is how I feel! My disease is known, there are others similarly struggling with feeling alienated.” So comes the second stage of Hope after depersonalization has been diagnosed following the first stage of Uncertainty prior depersonalization has been diagnosed. You feel encouraged, equipped, and ready to fight for your recovery.

Guided by the modern bioscience of medicine, we assume that being diagnosed consequently means to soon be cured. The so-called Psychiatric Bible, Diagnostic and Statistical Manual of Mental Disorders, (DSM-IV) formulates and regulates anything and everything regarding mental health, from academic research to insurance claims. Accordingly, the position of Depersonalization Disorder as a diagnostic category of DSM-IV is expected to imply an established system of care: knowledgeable doctors, effective treatment, and state-of-the-art research. A small number of patients find this system, utilize it, and sometimes wind up improved. Even among these “lucky” patients complete recovery is rare. Unfortunately, for the majority of people with depersonalization, a disappointing reality check awaits: they cannot find a doctor knowledgeable in depersonalization nor do they receive effective treatment.

Nevertheless, initially, despite all difficulties, patients keep their positive attitude and increase their efforts to find sufficient help. They learn that depersonalization is famous for its infamous diagnostic difficulties and treatment resistance. In many cases patients and their families turn into researchers themselves. They employ all possible and impossible resources: physician referrals, friends’ contacts, medical and psychological literature, depersonalization forums and the other opportunities of the Internet. A patient goes from one physician to another, try the newest medications, more specialized schemes of therapy, or exclusive dietary regimens, all with hit and miss results. Treatments may help somewhat: reduce anxiety, ameliorate the pressure of unreality or improve daily activity. But unfortunately, more often than not, this help is far from being sufficient. Changes for the better remain too modest or too temporary, frequently both.

After struggling with treating depersonalization for several months, patients learn more about the complexity and ambiguity of this disorder. The more they try to understand their own experiences and the research data, the more they comprehend the controversies over depersonalization. For instance, today there are two most recognized classifications of mental disorders: the DSM-IV and the ICD-10. Created by the American Psychiatric Association, the DSM-IV is official in the U.S and used in some other counties. The ICD-10 (International Classification of Diseases) is approved by the United Nation’s World Health Organization, and is used in Europe and other countries. These two classifications treat depersonalization differently.

The DSM lists Depersonalization Disorder in the group of Dissociative Disorders that embraces conditions developed as a result of dissociation. Similar to the DSM, the ICD has a special classification group for Dissociative Disorders. But in contrast to the DSM-IV, the ICD does not include depersonalization in this group. Instead the ICD lists Depersonalization-Derealization Syndrome in another group—Other Neurotic Disorders. Should this be interpreted that there is a dissociative depersonalization and there is a different, neurotic depersonalization? Confusing, even to professionals.

The DSM-IV and the ICD-10 also diverge in phenomenological characteristics of depersonalization and its association with other disorders. The DSM limits Depersonalization Disorder to pure cases, excluding depersonalization in the course of Panic Disorder, Phobias, Depression and other illnesses. However, patients observe that presentations of depersonalization often so closely intertwine with anxiety, depression, and obsessions that it could be impossible to distinguish each of them as separate entities. Patients describe how in a panic attack “at the edge of anxiety, depersonalization arises as an expansion of anxiety, but then the terrifying unreality provokes another paroxysm of anxiety.” In other case, depersonalization emerges in the form of ruminations “like a kind of obsession.”

Going through their searches for help with depersonalization, patients receive first hand understanding of how these psychopathological ambiguities correlate with the uncertainties regarding treatment of depersonalization. The medications which are typically used for the initial treatment of depersonalization are rather close to those used for depression, anxiety and obsessions. In many cases first tries are antidepressants (for the last few decades SSRIs), combined with anxiolytics (typically benzodiazepines). Second attempts might be trials of antidepressants of other groups, tricyclic antidepressants or the newest forms of MAOIs. Sometimes neuroleptics may be considered. If this classic assortment does not seem to be effective, there is still an arsenal of medications from other pharmaceutical groups, such as Naltrexone. And again – alas! Only in a very small percentage of cases does psychopharmacological treatment successfully heal depersonalization.

Psychotherapy proves to be an important part of the treatment, but frequently it also does not fully cure depersonalization. Even though some methods are introduced as specially designed for depersonalization, it is difficult to name a therapeutic strategy that would eliminate feeling unreal in the majority of cases.

After several bouts of going through another set of tests, trying another set of drugs or following another set of therapeutic techniques, patients recognize negative feelings of distress and frustration. They are hopeless and helpless. Tired and angry. And they anxiously notice growing fear that their debilitating depersonalization will never been healed. They may develop understandable mistrust of physicians and therapists. But at the same time they may acutely feel how they are grudgingly dependent on them. The stage of Hope After Depersonalization Has Been Diagnosed is turning into the third stage of Realization That Depersonalization Is a Difficult to Treat Chronic Condition. More about this stage will be found in the post that will appear in June.

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