Monday, October 19, 2009

NAMI perpetuates schizophrenia

In belated honor of World Mental Health Day, I thought I would begin with the National Alliance on Mental Illness (NAMI). As a parent, I'm supposed to like NAMI, right? It's a grassroots organization "dedicated to improving the lives of individuals and families affected by mental illness."

A stroll through the schizophrenia section of the NAMI website is a downer. NAMI is hardwired into promoting medications, while I assume that many of the people it supposedly represents and who are following NAMI's advice aren't that hot on them. The NAMI website even has an "Ask the Psychiatric Pharmacist" section. The answers found there in the FAQs freely admit that some of the drugs are addictive, they have unpleasant to life-threatening side effects, and yes, there are long term consequences to using these drugs. At the same time, the pharmacist goes on to reassure us that taking the meds somehow offers protection to the brain cells from becoming damaged due to mental illness. The "client" is treated like an idiot, who has no real clue what is in his or her own best interests.

I am dumbfounded that NAMI would dismiss the real health consequences of these drugs for those of their clients who are the front lines here, but of course, I shouldn't be. NAMI is more of a relatives' organization than a users' organization. I know of many people who are suffering the consequences of looking after their rocky relatives and NAMI gives them what they want - the ability to convince themselves and their relatives that they are better on the drugs than off them. It all makes sense until you end up with a relative who is on the meds, grossly overweight, perhaps diabetic, but still psychotic. NAMI dismisses the side effects and the psychosis by emphasizing that people just need to find the right medication. It's a vicious circle. There will always be a drug in the NAMI pipeline of advice. After all, NAMI supports the latest research, which is heavily weighted in favor of meds because that's the only research that is considered authoritative. There is no research money in people's actual experiences. To NAMI, schizophrenia is a biochemical disorder and that is all it is.

Many people say that NAMI helps them to cope better with an admittedly difficult situation. I understand and empathize because we all need to find ways to cope with a very scary, bewildering situation. My objection to NAMI is that I don't want either me or Chris just coping, I want to move beyond that to cure. But the NAMI website doesn't hold out that prospect. Coping is the best it's ever going to be in NAMI's view of things, especially when it comes to schizophrenia.

To NAMI recovery is all about coping - group living, structured programs, continuing of course with the medications, professionals (not you) taking charge of your life. The professionals can also be of service to monitor your meds. When NAMI talks about helping you to do your grocery shopping and to manage your money in pursuit of what it calls the prospect of a higher level of functioning (only the prospect of this low standard, may I point out), it makes me wonder whether the brain cells are actually being protected by the meds NAMI so strongly endorses. I see my son at the age of forty out grocery shopping in his bathrobe, drooling and disheveled, with a caring professional showing him what money looks like.

Coping is all you are going to manage to do if you take NAMI's advice on the meds. It does not recommend getting off medications for schizophrenia. The NAMI website won't even acknowledge that many people have done so and are doing just fine, thank you very much. The NAMI website is an exercise in scare tactics. It hasn't pointed out, as a grassroots organization should, that nobody wants to be on meds if they can help it. Many people don't want the meds and would actually like help getting off them and finding other strategies to deal with their problems. Doing so might put the individual outside the realm of just coping. NAMI would find this probably too radical a concept.

I don't and I won't envision that bleak future for Chris As a caring relative I can do my part to make sure he is not merely "functioning", but thriving. I have more confidence in the holistic approach than I have in what NAMI offers.


  1. From the moment of diagnosis onward a context is created for the patient and the family. Well meaning, but misguided, "professionals" aim to confine the patient and the family to a context that is defined by chronic illness, the ongoing need for pharmaceutical intervention, and the consequence is chronic hopelessness and despair.

    There is no medical evidence that supports the etiological theories in respect of the origin(s) of schizophrenia and no diagnostic testing to support any of these theories.

    What appears clear is that psychiatric drugs cause secondary disease pathologies that can be diagnosed. In addition to the considerable psychological side effects they cause (such as suicidal ideologue) they contribute to physical disease pathologies such as diabetes, tardive diskenesia, etc.

    Once a context is formulated for the patient and his or her family it is a difficult, and at times an insurmountable task, to overcome the beliefs inspired within that context. Like so many other limiting beliefs espoused by human beings these beliefs are mere myths. The classification of schizophrenia itself is entirely a myth. Delusional and hallucinatory experiences fraught with paranoia are real human experiences, a process that has meaning for the individual, however even that is borne out of an ongoing myth that the individual has chosen to believe in.

  2. Agreed. It was very hard for me at first to fight off the prevailing belief system that the doctors and institutions imposed. It ground out all hope, except, somehow I found it.

  3. As far as I know, NAMI was founded by two mothers of "mentally ill" persons, who were sick and tired of being "blamed" (=held responsible) by the professionals: "Don't blame us for the emotional suffering of our kids, thanks!" - They still did that to a certain extent back in the 1970ies when NAMI was founded by the said two mothers. Holding parents responsible. NAMI was (and still is) the relatives' answer to Laing and Bateson.

    The really intriguing thing about it is that NAMI-relatives chose (and still choose, of course) to misinterpret Laing and Bateson (and others). Laing and Bateson didn't aim at destroying parents. Quite the opposite. They wanted parents to face and let go of the lies (the trauma) that were (are) making life hell, not only, and obviously, for their "mentally ill" kids, but not least also for themselves. But the more you're identified with these lies, with your own trauma, the more such a request of course equals to a personal attack. Especially when the lie someone perceives as being who they are makes their kid react as destructively as "schizophrenia" it becomes a matter of survival to deny that this "schizophrenia" may merely reflect the destructiveness of the lie.

    What NAMI-relatives fear the most is not "the horror of mental illness". It is the horror of the lie they perceive is them. It is their own reflection in the mirror of "mental illness", which their kids hold up before them.

    It's sad, because nothing is in fact more liberating than a thorough look in the mirror, and the realization that the lie doesn't need to be who you are.

  4. The pendulum always swings too far one way or the other. In the rush not to blame the parents, particularly the mother, we have lost sight of what mental illness is really about, which is human suffering. I encourage mothers and fathers to have the courage to look at the situation with their child to try to learn what precipitated the problem. Parents do the best they can, but some children are more sensitive than others. Self-examination is actually very liberating, once you get over feeling threatened. The problem is that there are many psychiatrists now, not just then, who use very harsh language about the parents. Maybe they don't intend it, but that's how it is taken. There are some psychiatrists who I refuse to read because of the way they come across, which is a pity, because they have a useful message. However, if they want buy-in from the relatives, they should figure out that they can't use heavy handed language. This applies to any situation in life.


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