NAMI and My Sense of Self

Anosognosia (impaired awareness of illness): A major problem for individuals with schizophrenia and bipolar disorder.

As the years go by, I am less and less impressed with NAMI. I think their agenda is to improve the family’s comfort at the expense of the patient’s autonomy. They teach the rather disturbing idea that a large percentage of mentally ill people have no self-awareness, no insight into ourselves. Like the lower animals. Anosognosia, they call it.

The article I’ve linked to above has some glaring logical errors and has terrible ramifications for the mentally ill. I’ll list some of them.

  1. The article lumps bipolars together with schizophrenics as if we are all one big, happy family. We aren’t. Bipolar disorder is cyclic, often with long periods of remission in between episodes. This is not the case with schizophrenia. Schizophrenia is associated with unremitting cognitive deficits.
  2. In either case, there is no “awareness of illness” modifier to the DSM-IV codes. Frankly, it is my opinion that the majority of so-called “normal” folks are wandering around with the same lack of self-consciousness. Why are we pathologizing it?
  3. The article doesn’t examine in detail the cognitive effects of certain medications. Most notably, the antipsychotics have been shown to reduce the IQ by an average of about 10 points. In basing the sweeping generalization that we aren’t self-aware upon those individuals whose short-term memory is ravaged by their medications, the article makes a case for putting more individuals on the same meds. This will skew future research in this direction as more and more psychiatric patients are required to take meds that may cause anosognosia.
  4. There is considerable evidence that medications may not be necessary during remission in bipolar disorder type II – see Dr. Fieve’s recent book, “Bipolar II: Enhance Your Highs, Boost Your Creativity, and Escape the Cycles of Recurrent Depression.” If I state that I don’t need meds when I’m in remission, that is a treatment decision, not the symptom of a cognitive deficit.
  5. The milder forms of bipolar disorder occur far more that the severe forms. That is, most bipolars never experience psychosis. I suspect that there is a missing qualifier throughout the article – a description of what population exactly they mean. That is, do the authors include the milder forms of bipolar in their 40% statistic, or is the article strictly based on their experience with the sickest of the sick, the ones who wound up in-patient? If this is so, then the authors are stigmatizing most of the bipolar population based on a very biased sample. I suspect that the sample of bipolars in the article are folks who have never been educated as to the symptoms of their illness. Education alone makes a big difference in our ability to manage the illness.
  6. The horrible possibility that we aren’t aware of our symptoms is devastating to the self-esteem of even the most intelligent and self-aware mentally ill person. Am I acting out? Should I speak up or will my words betray my condition? I feel good today – maybe that’s just a mania talking? I disagree what what X is saying – am I delusional?
  7. This article opens the mentally ill to victimization by society and especially by the medical profession. The word “Anosognosia” gives society the pretense of a valid reason to marginalize the mentally ill, to victimize, to force-medicate, to control us. It enables our families, friends and employers to shrug off our ideas and opinions for no other reason than that we have been diagnosed and they haven’t.
  8. Why exactly is it that a heart patient is allowed to request that further treatment be withheld, yet a mentally ill person can be hospitalized against his will? Are we monsters?

For all its talk about stigma busters, NAMI has shown with this single document exactly what they are all about. I am not an animal. Mental illness is not a crime. And NAMI is not advocating for us.

UPDATE 4/15/2007:
Sylvia Caras of People Who accepted this post for inclusion on her own site. Stop over to People Who and check out the tremendous amount of excellent mental health advocacy information she offers.

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