One of the shadier concepts in psychiatry in that of anosognosia. It is the cornerstone of most justifications for the necessity and value of coercive treatment. It basically means that because you have mental illness that you have suffered some kind of brain damage that makes you unable to realize that you are ill. Refusing treatment becomes a symptom of your need for it. It is remarkable notion that is used most frequently by people like the Treatment Advocacy Center to justify that the mentally ill need to be forced to accept treatment for their own good because they dont even know they have an illness. “Treatment” in the way they use it is basically medication and/or hospitalization. By appealing to the concept of anosognosia these folks try to annul any criticism of psychiatric intervention by those who have endured it as being the result of distorted thinking or personal blindness on their part. In its most extreme variations it pictures psychiatrists in terms most people use only for God. The conception of personal blindness as something peculiar to people with “mental illness” functions to justify taking away someones’s rights to make decisions about their own life and through linguistic sleight of hand to make interventions which are frequently cruel, frequently dangerous, often demeaning seem to be something done for “their own good.”
I knew someone that had been in a state psychiatric hospital for 24 years. She survived unmentionable horrors. She told me once about the psychiatrist who tried to tell her that she didnt realize she was sick. She had been hospitalized because she accused her stepfather of rape and in the hospital had survived rape and assault. No one ever talked to her about life and what had happened to her. They just wanted to talk about symptoms and her need for more and more medication. She told him: “I know that I am messed up….How could I not be? But I also know I am a human being who deserves the same chance at life as anyone else. And this is not life. I dont quarrel with needing help. I quarrel with being here. And you are the one who is blind if you dont, wont, or cant see that. Your help is killing me.”
According to Rep. Murphy 4% of the population has a serious mental illness and 50% of them dont know it. In other half of the people with serious life impacting problems dont know they have a problem and need help. In Tennessee that would mean there are 120,000 thousand people with serious mental illness that dont know they have it. By definition those people are not in the voluntary mental health system. There are about 20,000 people in the correctional system and even if you entertain the truly bizarre idea that all of them are seriously mentally ill and anosognostic there are still 100,000 missing people. In Tennessee that is a really big town. I honestly dont know where the 50% number came from but when you take the number seriously and check it against reality it turns out that there are serious problems with taking it serious. But it really is an important number because unless you buy the idea that anosognosia is widespread and a real issue for many people the rationale for widespread coercive tactics simply falls apart.
Language is really important in this. What you call things matter. Whoever names reality in the end has control and power over it and what needs to be done. Anosognosia is so much more than simply a word.
There is ample evidence that personal blindness can be a major problem. It is part of being a human being. All of us lack insight in some areas and if you listen to what some people say some of us lack insight in a lot of areas. But I keep coming back to my friend. She knew what hurt. And she held onto that knowledge with a passion because to let it go would have been an assault on her worth as a person.
Much of the ordinary experience of the mental health system is about identity. We are told both who we are and what we can become in a thousand ways, both spoken and unspoken. Often the news is not so good.
When your identity is based on what is difficult for you then much of what you prize or care about is relegated to little more than an asterisk. I know one person who got excited when he learned about WRAP and when trying to explain it to his psychiatrist was told that he probably needed to increase his medication as he was obviously becoming more manic. When your living is an illness everything you do is a symptom. I know another person who told me her life’s ambition was for anyone, one single person to give her credit for being mad when she was mad instead of symptomatic. I know people who have told me that they have been told that everything about them: their feelings, their thoughts, their values, their goals, their relationships, their sex life….everything was the playground of their “illness.” One of them said it simply. “Their is no room left for me….”
I think the biggest problem that most people have with their treatment is not what they are told about their issues, their problems but about who they are or who they can become. One friend explained it cynically, “If I listen long enough to people who think I am an idiot maybe I will become one…..Or maybe I already am.”
One of the major differences in life is between those who believe they “got what they got” or that “they decide what they can become.” There are multiple and real limits on each of us. I am not saying anyone has a blank check. We dont. What I am saying is that what we make of things and what we think things make of us has a lot to do with what they are and who we become.
One of the best analysis of the scientific standing of anosognosia was written by Dr. Sandra Steingard. She reviewed a paper produced by TAC which allegedly proves the real existence of anosognosia as a real thing. I hope you will read the entire article. (http://www.madinamerica.com/2012/08/anosognosia-how-conjecture-becomes-medical-fact/)
Part of it reads:
The paper reviewed 18 studies of brain imaging of people who were identified as having this syndrome. This is from the conclusion to that study:
“Regarding localization, it is now clear that anosognosia is not caused by damage to one specific area. Rather a person’s awareness of illness involves a brain network that includes the prefrontal cortex, cingulate, superior and inferior parietal areas, and temporal cortex and the connections between these areas. Damage to any combination of these areas can produce anosognosia, but damage to the prefrontal and parietal areas together make anosognosia especially likely.
Anosognosia, or lack of awareness of illness, thus has an anatomical basis and is caused by damage to the brain by the disease process. It thus should not be confused with denial, a psychological mechanism we all use.”
This conclusion, which will now likely be repeated in TAC publications and elsewhere as a definitive statement of scientific “fact”, involves some slight of words. What the paper reports is that 15 of 18 studies found group differences between the study subjects and the controls but the findings were highly variable between studies. In the summary above, they mention that differences were found in multiple brain regions but the findings did not overlap much between the studies, i.e., although 15 studies had “positive” findings, they were often different findings in each study. My assumption from reading this review is that, despite this research, if one were to show a scan to a doctor, he would not be able to make a diagnosis from the scan. In other words, the differences are subtle and do not clearly distinguish a person with “lack of awareness” of psychotic symptoms from any one else.
If one were to do a similar study of patients who had strokes and subsequently had the classic form of anosognosia, the findings would be strikingly different. In every study, there would be profound abnormalities in the brain and they would all be found in the right parietal lobe of the brain. If you showed me a series of scans of people with left sided neglect due to strokes and those of people who did not have this syndrome, I believe I could easily pick out those with left neglect. In this case the brain damage would be obvious and the resulting deficit would be easy to predict.
Coercion hurts. It comes with a cost. The idea of anosognosia is a blank check to hurt.
This is from an earlier post about coercion:
“The research is clear. Coercion is not an effective strategy over the long term to maintain any change. Here are some of the problems:
- Coercion in the long run gets you less of what you want by destroying the intrinsic motivation to maintain that change. If a big stick is how you intend to get people to change people tend not get emotionally invested in the value of the change you want them to make. Their only investment is in not getting hit. And after awhile even the stick doesnt work. How many people do self destructive things even when they know the consequences will be dire? A big stick may be a great way to get someone attention. But they may not be attending to what you think they are and it is one of the worst ways to build anyones commitment to continued change.
- Their is no evidence that a bigger stick improves the performance of anything. It increases anxiety. It increases anger. It increases the feeling of being overwhelmed. The scientific evidence is crystal clear on this. The idea that people will do nothing unless you make them is based on a philosophical model of human nature that is simply not backed up by the facts.
- Punishment destroys creativity. Every theory I know of about recovery says that clear thinking is essential to recovery. Punishment narrows the focus of thinking. Again the research is clear about this.
- Punishment not only gives you less of what you want. It gives you more of what you dont want. It encourages people not to tell the truth, to be suspicious, and to be resentful. It teaches people that how well they manipulate the people with sticks is the most important behavior for them to have. Recovery is based on people accepting responsibility for their behavior. Punishment and coercion teaches people that is a naive and dangerous behavior.
- Much of recovery is based on long term thinking and commitment. Coercion encourages short term thinking. Hope is based on long term thinking and a short term focus destroys hope. Life becomes about what you have to put up with instead of what you can accomplish.”
The only question is not what is wrong with the people that seek help, but what is wrong with the way we give help. People need to feel like things are worth emotionally investing in. Does it offer them something worth having? Does it tell them they have something to give? Is it empowering and affirming? Is it safe? Can it be trusted? And do the people who are trying to help me care about me as a person? For too many people all the answers are no.
People buy into what makes life better.
Treat people with dignity. Their fundamental value as people should be where you start and not be based on their response to treatment.
Be honest. Let people know what you know but dont lie about what you dont know.
Empower people. Dont allow decisions. Treasure their decisions.
Teach things that matter. It is about making life better. It may be hard. It may be slow. It may never be as better as you would like. But give people the tools that give them a chance.
Affirm hope. If you dont the rest is a waste of time.