For the last week or so I have been tracking this weird word, trying to understand what it meant and the implications of that meaning. In many ways it is the foundational concept of the platform the Treatment Advocacy Center supports for involuntary treatment. Basically it means that people are blind to the fact they have an illness. According to TAC 50% of people with schizophrenia and 40% of those with bipolar suffer from this disorder. And because of this “blindness” the reasoning goes it is only kind to make sure that people get the treatment they need for their own good, rather they understand it or not or rather they want it or not.
According to TAC anosognia is the result of a brain injury to the right side of the cerebral cortex. And according to the TAC all this is a proven scientific fact (a “psf”). According to them anosognia is the primary reason that so many people refuse for example to take psychotropic medication for their illness.
Unpacking the meaning of all this I have discovered all sorts of fascinating things and come up with a raft of unanswered questions.
The concept of anosognosia was developed for stroke patients and others suffering various brain insults who may not realize they were paralyzed or blind. It seems to be an argument by analogy more than anything else. I found lots of folks who would tell me it was a “psf” but not a lot of information about how it was proved to be a “psf.” If anyone has actual links to the studies that “prove” this I would love to have them where I could actually look at the studies. It really seems to be proof by pronouncement more than anything else.
Some psychiatrists say that brain damage causes an inability to see your need for psychotropic meds. Dr. Peter Breggin turns that notion on its ear. He says there is such a thing as intoxicational anosognosia and that taking taking psychotropic medication damages your brain and makes you unable to see what a problem medication really is. To me, to be honest, it sounds like people calling the people who dont agree with them brain damaged because they dont agree with them. I know a psychiatrist who has bipolar anosognosia. He believes that the diagnosis is largely a fad and where others see clear evidence of bipolar he normally sees none. I dont think that proves brain damage as much as his colleagues might disagree with them, but some folks seem to believe that what name you call people explains their behavior.
anosognosia means blindness. It does not mean denial, rationalization, or blaming. It does not mean making excuses. It means they dont know something is wrong. I know some people who are in denial of their issues. I know some people who rationalize their issues. I know some people who blame others for their problems. I am coming to believe that I really dont know the right people, but I dont know anyone who believes nothing is wrong. Most people I have known seem to be constitutionally unable to not see their life has went to hell when it goes to hell. And if half the people with mental illness suffer from this why dont I know anyone? Why do I not now of anyone I at least suspect from this? I have a hard time buying it to be honest. I believe denial and other coping mechanisms, but those are more a function of being a human being. We all do those. I cant help but wonder why no one with anosognosia seems to live around here.
I double checked to make sure I wasnt missing something, but I dont think I am. I know many people labeled with schizophrenia and maybe when they are actively psychotic they dont know, but most of the people I know are acutely aware they need help.
When I looked at the percentages they quoted as having anosognosia I couldnt help if that wasnt a code word for saying they didnt want to take medication. The belief that only brain damage can cause someone to not want to take medication is one big assumption. To me it seems like it takes a certain degree of blindness (anosognosia?) to believe there is no way that someone could make a rational decision to not take medication. It ignores their prior experience with medication, the lack of success meds often have, the side effects they have, the effect medication has on the quality of their life, their values, and ultimately their right to make decisions about themselves.
Their is a huge unspoken notion is this idea. To my knowledge there is no test that clearly differentiates between the brain of someone with bipolar and someone without. All the theories about neurotransmitters and stuff like that so far simply havent been proven. What most responsible people right now will tell you about what they know is that they dont know. From personal experience there seems to be a wide divergence between doctors in what is and isnt bipolar to begin with. Yet this idea of anosognosia says that a definable brain injury causes this blindness to bipolar. You are in the unique position of saying that something you cant prove you have causes brain damage that you can prove. I dont know if anyone but me finds that to be something of an incredibly bizarre notion, but I do.
One of the things I never found was even a hypothesis of mental illness causes anosognosia. It seems to be a major weakness of the whole idea and asks that people accept a lot on faith that might easily be explained in other ways.
I couldnt help but wondering if this isnt another example of backward thinking masquerading as scientific truth. A nice theory was developed about mental illness by watching what medications did. If they affected neurotransmitters and people got better then the lack or surplus of neurotransmitters must cause the illness. Great idea…… but it doesnt appear to be true. People dont see the need for treatment…It seems like the same problem that many people with brain injury has. They must have a brain injury. Great idea…..But is it an assumed truth by people who want it to be true or a proven truth by people who are open to any truth. You answer that for yourself.
One study I did see says that people who were blind to the need to treatment but who were forced into treatment improved in their insight about their need for treatment. Are they saying that treatment (read medication primarily) cures the brain damage that causes the original anosognosia? How real does that seem to you? You have brain damage assumed with a cure that no one can begin to explain how it works. Maybe people get more insight because they gain skill in telling people with control over their lives what they want to hear to get them off their back.
There are more questions but perhaps the horse really is dead and I need to stop beating. After the last 6 weeks or so of looking into the facts they TAC claims and the studies they point to it seems clear to me that they consistently overemphasize and distort most of the studies they quote. They believe in truth by pronouncement. If you say it often enough and attack those who disagree with you with enough vigor the theory seems to be that eventually it will seem true.
Anosognosia is a critical concept for TAC. It legitimizes acting against people on the basis “they dont know what they need and they need us to act in their best interests.” It makes those with a mental health diagnosis into second class citizens and is, I believe, a pseudo science term that is mental health stigma at its meanest and most severe.