Anosognosia: Curing the disease of not knowing about simple, proven prevention of and treatments for serious mental illnesses

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The word of the day in my essay is anosognosia, a medical term meaning that a person has a sort of “brain blindness” to their medical condition.  Some psychiatrists like to use the word to describe folks with mental illnesses, who refuse to acknowledge any of their symptoms of their diagnoses.  It’s not just patients who can have anosognosia; professionals can, too.  Another way of saying this is that a person is completely blind to what they don’t know, and cannot even grasp the concept of their blindedness.

I learned the word, anosognosia, while I was sitting in the Capitol Hyatt Regency, after buying some bottles of wine for people I didn’t know. I’d just spent $1,500 flying to meet some people on a quest to prevent, reduce and even heal serious mental illnesses that many believe is Quixotic.  Folks seemed to wander into the lobby bar for convention or “government business”; but then a more a bit motley crew enters. They don’t seem like standard issue tourists or Washington suits. One spiky-blonde dude is wearing a Google Glass, decidedly NOT DC standard issue, along with a very straight-arrow guy. The women are bubbly and warm. All these folks must be my people. It’s from them I learn this word—anosognosia—means a “brain blindness” or lack of insight. I understood the concept, but had never heard the word before in 65 years of life.

If you hang around anywhere near the mental-illness industrial complex, you’ll hear some people talk about “serious mental illness” as a sort of Stage-4 metastatic cancer. The seriously mentally ill are often said to suffer from anosognosia, or a lack of insight that something is dreadfully wrong with their thoughts and behavior.  From the frame of serious-mental illness, some argue that things like ADHD, anxiety, depression and addictions are the mental equivalents of colds and flu. I don’t agree with the latter, especially after years of helping families with children with those so-called mental colds and flu.  Whatever the diagnoses, mental, emotional, behavioral, and related physical disorders of any kind are not trivial in the lives the individuals or families afflicted, let alone on the nation.  I think the entire country has a collective case of anosognosia about the growing phenomenon of mental illness.

To citizens and many political folks, any discussion of mental illnesses—especially conspicuous ones like schizophrenia or bipolar—is a sort of social Ebola: you could be infected by it just by the discussion, as if the words spoken cause the illness. Freud didn’t help much, with the strange notion of children wanting sex with their mothers. Talking about mental illness in most groups makes most people want to flee the room.

Perhaps you’ve heard the phase on TV, “XYZ mental illness is thought to be caused by a chemical imbalance…of an unknown original.” That is followed by happy and healthy pictures, with music and a voice-over promising relief by [insert trade name].  The origin of the chemical problem is left ambiguous. The discovery that some pharmaceuticals could treat persons with just about any mental illness has been a blessing and a curse. The blessing is that many have had less suffering.  One of curses, not obvious, is that many people —including in psychiatry, advocacy, and politics—stopped even thinking about the possibility that these human afflictions might be prevented, averted or substantially reduced in the first instance. And they have stopped even learning about low-cost evidence-based treatments, often with better results than current treatments. Why is it that so many in medicine, advocacy, and politics suffer from anosognosia (a brain blindness) about the possibilities of preventing many if not most mental illnesses?

The answer lies in calling attention to a time when people rallied to prevent serious afflictions in recent history. People of a certain age in North America, such as myself, lived through a true, scary epidemic that killed and maimed many people, polio. Our parents where terrified.  As a child, we were not allowed to swim, an insufferable thing to me as a child growing up in Phoenix when air conditioning was a novelty.

As the polio epidemic waxed, iron lungs and braces allowed many people to live. But the March of Dimes caused people to clamor for a way to prevent, avert and reduce polio. Americans were united in wanting a way to protect the upcoming generation.  Jubilation erupted when the study led by Thomas Francis proved that the Salk vaccine prevented polio. Soon after, virtually every child in America was inoculated, and five years later 60,000 cases of polio shrank to about 170.  The makers of iron lungs must have suffered, as certainly as the makers of the braces and crutches.

Polio was terrifying, and morbidity and mortality today from mental illnesses are way worse than the polio epidemic of my childhood. Many times more people dying or being impaired from a mental illness than polio, why do we as a nation just settle for the equivalent of iron lungs and brace, psychotropic pills?  Why aren’t we as families and a nation clamoring for a preventative approach like people cheered for the Salk and Sabin vaccine?

Key to the polio story is that people acknowledged the epidemic, and people knew that polio could and did strike any family—like it did to Franklin Roosevelt.  People today do not acknowledge that there is an epidemic of mental, emotional, behavioral and related physical disorders striking families of every stripe. No, we pretend it’s “those people” who are somehow blameworthy. This is odd, however, because of the TV ads for a bewildering array of medications for mental illnesses show obvious middle and upper-class WHITE folks. Those ads clearly suggest that something is happening to every family in America. Otherwise, nobody in the boardrooms of drug companies would be paying for all those media ads encouraging millions of people to ask their doctors about the latest medications for mental illnesses.

When I mention the surge of sales of psychotropic medications, many just slough it off as media hype. “It’s just because of marketing,” opine many. Sorry, there is real fire behind this smoke.

Indeed, something is happening in America, based on careful reading of the 2009 Institute of Medicine Report on the Prevention of Mental, Emotional, and Behavioral Disorders and related research. About one-of-two young people will have a mental, emotional or behavioral disorder by ages 18-21. That’s why there are so many ads.

So let’s compare mortality and morbidity of mental illness to the “real” epidemic of polio in the 1950s?  Thus, if polio were epidemic as it was among children, teens and young adults in the 1950s, the nation would have 6,000 deaths and 120,000 cases of polio in 2014. Now translate that to a state, say Connecticut, which would then have about 68 deaths and 1,320 cases from polio in 2014.

Now, consider the report-speak in a State of Connecticut blueprint to address mental-health issues, raised by the tragic Newtown shooting.  The report states, “…Approximately 156,000 of Connecticut’s children have a diagnosable mental-health symptoms that would benefit from treatment. The lifetime prevalence for any mental disorder for 13-18 year olds is 46.3%, with 21.4% having a ‘severe’ disorder.”  Morbidity alone from mental illness would dwarf morbidity from polio. This is just for children—not all ages like the polio data cited.

People should be screaming, yelling, picketing Congress, and having icy-bucket challenges for a cure or prevention of mental illnesses. There should be a gigantic quilt on the Mall for all the people who’ve died as an insidious consequence of mental illness. Oh, yes, it kills and in many more ways than suicide.

Mental illnesses—unlike polio—do not involve metal braces or iron lungs visible in daily life. Unlike polio, muscular dystrophy or cancer, there are no telethons with the heart-wrenching pitches for a “cure” or prevention for mental illness—with the embedded appeal that it can strike any family or person.  Unlike polio, mental illnesses evoke an implicit or even explicit of moral judgment of feigned or deserved illnesses.

At the heart of the denial is an implicit cultural doctrine that mental illness is an immutable matter of genetic lottery with a giant dose of Divine determinism, as it “runs in families” or is punishment for sins.  If so, there is no cure or prevention. There are only palliative treatments involving medications, perhaps with supportive therapies. Read that as iron lungs and braces for life. This has the quality of medical horoscopes to my mind, of fatalist bent.  It, too, is a form of anosognosia.

Once that was true of polio, lest we forget. I can only imagine the bittersweet thoughts and feelings of parents whose children contracted polio in the early 1950s—only to learn that a few years later the Nobel Prize in medicine awarded to Drs. Thomas Weller and Frederick Robbins for their 1948 laboratory work would lead to Salk and Sabin vaccine that has nearly eradicated polio from the world.

Today, we have way more than the metaphorical equivalent polio discoveries of Thomas Weller and Frederick Robbins whose discoveries led to the Salk vaccine.  Today, you can find the discoveries at the National Library of Medicine, better known as www.pubmed.gov, which could lead to the prevention and, maybe even, a cure of mental illnesses. I know some of those discoveries, and I am but one puny human looking at the literature, and every day I find or learn something that expands my hope.

The difficulty is that that most scientists and medical practitioners and their respective acolytes live on what my colleague and co-author, David Sloan Wilson, calls the Ivory Archipelago—the itty bitty islands of expertise that dot the sea of knowledge.  If you only study the flora and fauna of your tiny island, you are unlikely to “connect the dots” across the entire archipelago of knowledge. There are often island police who keep you imprisoned by shame and sanctions for even imagining what might be on the other academic islands you can see in the distance.  Some of my personal stories illustrate the social and intellectual sanctions for daring to wonder about those other islands of data, thought and theory.

My original undergraduate degree was in history, but I was an adventurous inhabitant of that island willing to challenge the logic of taboos about imagining the secrets on other islands. One of my professors during my junior year, the late Phillip Paludan who had a very distinguished career, told a story in his oral memoire (see http://archives.library.illinois.edu/archon/?p=digitallibrary/digitalcontent&id=3955, pp. 108-10) about the day I challenged his logic and that of my other beloved history teacher, Clifford Griffin. I adored these mentors, but I thought the particular points they made were not correct logic in this class of 200 juniors and seniors when I was but a sophomore. I was shunned by the other students for challenging the professors, but Drs. Paludan and Griffin were actually delighted and lectured the class the next period that I was right—which didn’t help with my peers.  The moral of the story is that peers frequent enforce the “don’t challenge the authorities” intellectually, and that is true right now about the issue of preventing major mental illnesses.  This bizarre trait of mine did not end in that class, though I’ve learned to be more tactful and strategic.

My senior honors paper in history was about a biological cause, lead poisoning of African Americans in the industrial North and West, causing the explosion of violence. Now, my senior honors advisor gave me a B+, for which he later apologized. His comment to me later was that it was the best Senior Honor’s thesis he’d every read, when I had lunch with him at Harvard. Boldly I asked, “Why did you give me a B+ then?” He blushed and said, “no one had every written such a paper combining biology and history in the department”, and that he had no way personally to evaluate the data I presented. Now, I had never had a course molecular biology let alone brain science, but lead (Pb) was known toxin by the mid 1960s related to aggression and IQ problems. I just put two pieces of data together, and connected the dots or Ivory Tower islands together.

Sure enough today, we actually know that that rates of homicide and crime can be predicted by airborne lead (Pb) levels in the 3,111 counties in the lower 48 states [1, 2]. Since lead (Pb) doesn’t decay and is now in dust sized particles, it can still affect crime and violence in our older cities—but nobody much does anything about it nor knows that simple, low-cost prenatal and obstetric practices, tested in randomized control trials, that would protect children and society.

Mmm…I wonder how violence and educational achievement and violence Chicago and St. Louis would be different, if we used that science to protect such children. This is a case of media, policy and practice anosognosia of not knowing about life and death consequences. But the nation and media went ape crazy when some imported toys had high levels of lead that were trivial to the ongoing exposure of inner city children today from airborne lead (not the paint).

There are many more examples in my career that come to mind the anosognosia of other islands of knowledge that could lead to breakthroughs in the prevention of mental, emotional, and behavioral disorders.  One example deserves special attention, because it could have saved the lives or injuries of people I know and care about in Tucson, Arizona on January 8, 2011.  Jared Loughner shot and killed people in my hometown, and he had a clear case of early, first-episode psychosis.  Jared killed Gab Zimmerman who I knew well. He severely injured Gabby Giffords and Ron Barber, who I’ve known for many years. He killed a little girl, Christina Greene, who attended a school that had been using my violence prevention program for nearly two decades.  I had serious emotional skin in the game that day. I cried out, wept, and screamed when I heard the news.

The second I saw the YouTube videos of Jared Laughner, I knew that he was having a first episode psychosis. I have worked in three psychiatric hospitals and with patients with serious mental illness, and you can read that a mile away after a few cases.

Sadly and horribly, I also knew that the first randomized control trial had been published a year earlier in the Archives of General Psychiatry preventing or averting a large percentage of first-episode psychoses. Indeed, if that study’s findings had been used as public policy in Arizona with our approximate 900 cases of first-episode psychoses per year, that simple, low cost ($15) prevention strategy might avert 200 out-of-900 cases per year.  Just recently, seven-year follow up that study was announced. The second I read the results, I made picture-graph to show the significance of that astounding study.

This study will arouse massive anosognosia among vast swaths of mental-health industrial complex. I understand this blindness, as it would demolish many sources of employment and self-esteem. (PS:  I have NO financial interest in any omega-3 product).

So let’s consider other science that offers glimpses that clearly suggest the possibilities of preventing mental illnesses from A to Z.  And if you are one of those people who think your pet mental illness is more important than somebody else’s mental illness, please hold that thought lightly.  None of them are fun, and remember that mental illnesses run in packs.  People can and do have several mental illnesses at a time, which creates double or triple trouble.

All this is good news for our world, yet please remember compassion will be required with this knowledge spreading. There is something that has been voiced to me occasionally: if there is actual prevention then families might be blamed like “refrigerator mothers” were blamed for schizophrenia in times past. This requires a compassionate stance, yet also cannot stop the drive to find true prevention that could abate untold suffering.

Shifting Mental Gears 
As these musing wobble and toddle about in my brain, our convener host, Scott-Bryant Comstock, appears. He’s a cross between a living Quaker, an evangelical pastor and a boy-scout leader, who runs the Children’s Mental Health Network. I was delighted to learn that he could swear well, though.  The evening is fun and interesting. We learn the RULES for the next day. We have about 10-15 each to speak from the heart in a fishbowl arrangement, while the powers-that-be from the Congressional Office look on while we emote. It’s an enjoyable evening of interesting people.

It’s the next morning. I am lost trying to find my way walking to the meeting place, but find it. Stories of crisis, drama, challenge, despair, resilience and uncertainty move me.  Our straight-arrow friend tells an equally compelling story of having to draft Kendra’s Law, leading up to the idea of Assisted Outpatient Treatment (AOT).  I am sure the legislative aids think they have landed in the middle of an alien EST group.

My story is both as a child survivor of craziness and that of a clinician-scientist who dares to speak heresy: Mental, emotional, and behavioral disorders—including very serious ones—are likely preventable.  I get the notion of mandated treatment. My brother and I had to commit our parents, not that it worked out so well. Why? The court-ordered treatments, themselves, were inane at best and iatrogenic at worst. I could not save my father from cancer that grew in him from toxic addictions. From my growing skills in graduate school, I was able to cobble together some contingency management protocols to give my mother more than a decade of life freer from her addictions.

I don’t have anosognosia about the need for court-ordered treatment, nor did anyone in the room. Now outside the room, I fear that there is a scientific and spiritual anosognosia, amongst the beltway denizens about the prevention of and/or recovery from or treatment of mental illnesses, including serious ones like schizophrenia and bipolar. The question, in the meeting, is really not about assisted (court-ordered) treatments. Rather, the word “assisted” is an adverb modifying and adjective (outcome) that modifies a noun, TREATMENT. There are, in fact, about 20+ high-quality, evidence-based treatments for moderate to severe mental illnesses on the National Registry of Evidence-Based Programs and Practices (NREPP). Sadly practically nobody knows about them, let alone uses them—yet more cultural and trade anosognosia. Damn, people, you can read about these online, and some are even free or cost almost nothing.

There are hundreds evidence-based practices by more that scientists just haven’t submitted to NREPP, as they don’t make money or get recognition for doing so. How do I know this?  First, I am one of the few people to have multiple strategies on NREPP. Second, my personal habit to kick the Hell out of my personal, scientific and cultural anosogosia; I like to make myself smarter by embracing what I don’t know and even seeking it out.  That’s one of the reason I am not a university academic, as subject-matter departments can be prison cells of anosognosia with armed tenure guards who are under subject-matter fatwas carrying academic Tasers. 

A Historical Reminder. 
In 1840s, Ignaz Semmelweis told the Viennese medical society that childbed fever mortality could be prevented by hand washing. The Viennese medical society promptly developed a serious case of anosognosia about the very possibility, since God had decreed that women should suffer in childbirth—as a consequence of eating the Biblical apple. Thus was the fixed idea of the era. Semmelweis was declared mad, and he eventually died as a result of their court ordered treatment.  If Semmelwies’ discovery had not become common practice, about a quarter of us would not be alive.

Let us not be guilty of anosognosia of prevention, early intervention, recovery from, as well as powerful yet simple proven treatments from or for major mental illnesses.

References Cited

1. Stretesky PB, Lynch MJ: The relationship between lead and crime. Journal of Health & Social Behavior 2004, 45(2):214-229.

2. Stretesky PB, Lynch MJ: The relationship between lead exposure and homicide. Archives of Pediatrics & Adolescent Medicine 2001, 155(5):579-582.3. Kellam SG, Wang W, Mackenzie ACL, Brown CH, Ompad DC, Or F, Ialongo NS, Poduska JM, Windham A: The impact of the good behavior game, a universal classroom-based preventive intervention in first and second grades, on high-risk sexual behaviors and drug abuse and dependence disorders into young adulthood. Prevention Science 2014, 15(Suppl 1):S6-S18.

4. Kellam SG, Wang W, Mackenzie AC, Brown CH, Ompad DC, Or F, Ialongo NS, Poduska JM, Windham A: The Impact of the Good Behavior Game, a Universal Classroom-Based Preventive Intervention in First and Second Grades, on High-Risk Sexual Behaviors and Drug Abuse and Dependence Disorders into Young Adulthood. Prev Sci 2012.

5. Wilcox HC, Kellam S, Brown CH, Poduska J, Ialongo N, Wang W, Anthony J: The impact of two universal randomized first- and second-grade classroom interventions on young adult suicide ideation and attempts. Drug & Alcohol Dependence 2008(Special Issue):14.

6. Musci RJ, Bradshaw CP, Maher B, Uhl GR, Kellam SG, Ialongo NS: Reducing aggression and impulsivity through school-based prevention programs: A gene by intervention interaction. Prevention Science 2013:No Pagination Specified.

7. Anda RF, Brown DW, Felitti VJ, Bremner JD, Dube SR, Giles WH: Adverse childhood experiences and prescribed psychotropic medications in adults. Am J Prev Med 2007, 32(5):389-394.

8. Green JG, McLaughlin KA, Berglund PA, Gruber MJ, Sampson NA, Zaslavsky AM, Kessler RC: Childhood Adversities and Adult Psychiatric Disorders in the National Comorbidity Survey Replication I: Associations With First Onset of DSM-IV Disorders. Arch Gen Psychiatry 2010, 67(2):113-123.

9. Prinz RJ, Sanders MR, Shapiro CJ, Whitaker DJ, Lutzker JR: Population-based prevention of child maltreatment:  The U.S. Triple P System Population Trial. Prevention Science 2009, 10(March):1-13.

10. Kinney DK, Teixeira P, Hsu D, Napoleon SC, Crowley DJ, Miller A, Hyman W, Huang E: Relation of schizophrenia prevalence to latitude, climate, fish consumption, infant mortality, and skin color: a role for prenatal vitamin d deficiency and infections? Schizophr Bull 2009, 35(3):582-595.

11. Humble MB: Vitamin D, light and mental health. J Photochem Photobiol B 2010, 101(2):142-149.

12. McGrath J: Is it time to trial vitamin D supplements for the prevention of schizophrenia? Acta Psychiatr Scand 2010, 121(5):321-324.

13. McGrath J: Migrant status, vitamin D and risk of schizophrenia. Psychol Med 2011, 41(4):892-893; author reply 894.

14. McGrath J, Brown A, St Clair D: Prevention and schizophrenia--the role of dietary factors. Schizophr Bull 2011, 37(2):272-283.

15. McGrath JJ, Burne TH, Feron F, Mackay-Sim A, Eyles DW: Developmental vitamin D deficiency and risk of schizophrenia: a 10-year update. Schizophr Bull 2010, 36(6):1073-1078.

16. Meyer U, Feldon J: Epidemiology-driven neurodevelopmental animal models of schizophrenia. Prog Neurobiol 2010, 90(3):285-326.

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enbryDennis D. Embry, Ph.D., is a prevention scientist, and trained as developmental and child psychologist.  He is president/senior scientist at PAXIS Institute in Tucson; co-investigator at Johns Hopkins Center for Prevention and Early Intervention; and co-investigator at the Manitoba Centre for Health Policy in Winnipeg. Dr. Embry serves on the Children's Mental Health Network Advisory Council. This essay is an excerpt from his book in progress entitled, “Ending Youthanasia”. Copyright © 2014, Dennis D. Embry. Reprinted by permission.  NOTE: ANYONE WHO DONATES $100 or more to the Children’s Mental Health Network will receive a free autographed copy of Ending Youthanasia, when it’s published. 

Comments

  1. anonymous's avatar
    anonymous
    | Permalink
    I am also surprised that you, as a psychologist, don't know what Anosognosia is. Unfortunately, your article doesn't help anyone else understand it either.

    I am here googling for any treatment strategies for my 87 year old mother. Every day she tries to stand up, and is confused when she finds that her legs no longer work properly. That is what Anosognosia is. It is a fairly common result of neurological damage, either from stroke or dementia.
  2. Dennis Embry's avatar
    Dennis Embry
    | Permalink
    Thanks for the comments. George, your comments move me greatly. I am working on that whole marketing campaign, and look forward to your thoughts via email. And Maria, If this turns out to be the most interesting essay of a decade, I would be so happy.

    And for anonymous. The smartest people I know in the world are the ones who admit when they don't know something. I sure you've met with many professionals who pretend like they know it all, which is a sort of felony version of anosognosia. Oh, by the way, the idea of "lack of awareness" of one's illness is not something I am or was uniformed about. You learn about that behavioral trait soon in practice. What most people would not know about anosognosia (or whatever word you chose) is that there have been experimental studies on how to overcome that issue. Now that is really interesting. It's not a phenomena solely the province of psychiatry; it's problem in many other health and behavioral conditions.

    Perhaps the most interesting experimental study in psychiatry that has the best result handling the "blindness" of seriously mentally ill is the experiments using Acceptance and Commitment Therapy with folks being discharged from state hospital with the diagnoses of paranoid schizophrenia—a rather flamboyant manifestation of anosognosia. You can read these at http://www.ncbi.nlm.nih.gov/pubmed/22116935 and http://www.ncbi.nlm.nih.gov/pubmed/12362963
  3. George Patrin, MD/MHA, San Antonio, TX's avatar
    George Patrin, MD/MHA, San Antonio, TX
    | Permalink
    Anonymous, I am a Pediatrician Child and Family Advocate who fought for my kids and families against the current of the status quo, ignorant to the extent of 'the blindness' among myself and my peers. The 'blinds' were lifted from my eyes with the tragic suicide death of my 20 year old son. Not until then did I realize I, too, over 23 years of practice, was not doing for my patients what would have saved my son, my families. How could I have missed it! My eyes and ears were open the entire time. Now that I've 'seen the light,' I've been shouting 'the truth' from any podium I can find, but find people pat me on the head and say, "Sorry for your loss," "thanks for your courageous comments," and then walk away as anosognosia sets in and the status quo is followed again come Monday morning, at home from the conference. So Dennis, how do we 'market' the way forward to prevent and even eradicate mental illness, heeding lesson's learned from polio? So many people have experienced mental illness and suicide in our society it's become an expectation of normalcy! Let's work smarter in the right direction to permanently lift the veil from our colleague's (and neighbor's) eyes! What is the treatment for anosognosia?! Being personally affected by polio worked in the past, why not now with mental illness and suicide?
  4. anonymous's avatar
    anonymous
    | Permalink
    It is very disturbing that you are a psychologist and did not know the word anosognosia until now. That truly frightens me. How many other mental health practitioners are unaware?!?!?!?! No wonder so many families with seriously mentally ill loved ones with anosognosia are battling ignorance in the mental health system. Shaking my head...
  5. Maria Maldonado's avatar
    Maria Maldonado
    | Permalink
    WOW!!! Most refreshing and interesting essay this decade. Reading it will prevent and even cure Anosognosia! Acting on the knowledge gained, well...that could eradicate it.

    Thank You
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