"anosognosia is blindness," and tough to pronounce!

Most people who learn the word anosognosia immediately understand its role in eating disorders, especially anorexia. NONE of us have a clue, at first, how to pronounce it!

TAC knows how to pronounce it, and here's a new blog post on it.

For many years, since I borrowed the term from the bipolar/schizophrenia/stroke arenas, I have encouraged eating disorder professionals, parents, and the public to account for this phenomenon: the brain can blind itself to certain parts of reality. It's not denial and it's not stubbornness.

Like a stroke, anosognosia can blind only one area of perception, insight, or motivation. It can be partial, and it can wax and wane. But to assume that a person with an active eating disorder can see his or her body, relationships, food, and medical issues as clearly as they see the clock on the wall or Pythagorean Theory is a willful blindness on OUR part.


Comments

  1. I suffer from amenosognosia--every time I read your blog I want to shout AMEN!

    (Maybe I have anti-amenosognosia...?)

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  2. This is the paragraph that jumped out at me! (after I finished laughing about Colleen's remark) "When I know I’m not mentally ill, why would I take onerous medications and keep clinic appointments? It is a legal/policy fantasy that people who suffer from anosognosia are uniformly able to make informed decisions re: their care and to rationally conduct their own affairs. As such, those in the active throes of illness are “empowered” to make their own decisions without interference from others, including parents. Many of those who advocate for people with serious mental illnesses seem do so in full naivety of anosognosia, with predictably bad results."
    How it is that insurance companies still refuse to recognize the seriousness of ED coupled with anosognosia? Many may recognize they have an illness, a serious illness at that, but they aren't competent enough to be empowered to make their own decisions, I think. Why do parents need to fight so darned hard to get treatment for their loved ones?
    (Not expecting an answer. Just venting.)

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  3. Too bad there is already a meaning attached to "amenorrhea".

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  4. I agree that 'lack of insight' (or anosognosia, if you believe that EDs are 'brain disorders'...) is often a symptom of anorexia nervosa (AN) - especially during the early stages of the illness and in younger people with the illness. However, this lack of insight doesn't always persist, even though the person remains sick or is getting worse.

    When I first developed AN as a 12-year old, I lacked insight to the illness. I felt better restricting food and got really 'high' on over-exercising. I could see I was thinner and initially it didn't worry me. I wondered why everyone around me was so worried about me. However, this lack of insight only remained for about 18 months. This was despite me having a very long history of AN. I reached a point in my early teens where I was well aware that my thinking and behaviours were unusual and unhealthy.

    Sometimes (often?) a person with AN does realise that they're sick, but they are too frightened to change and too frightened of what they will be like (and what life will be like) without the AN.

    And Charlotte raised a really important issue that you blogged about a couple of days ago: the appalling treatment some people with EDs receive - and the appalling way they are made to feel that they are 'bad', 'wilful' etc. Such treatment was used as a threat in the 1970s and 1980s in the UK, when I am sure that many doctors believed that AN is a 'choice'.

    So, I would query the issue of persisting lack of insight in more longstanding AN, and in all cases of AN. Some people are just terrified of change and terrified of punitive treatment regimes.

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  5. I agree that 'lack of insight' (or anosognosia, if you believe that EDs are 'brain disorders'...) is often a symptom of anorexia nervosa (AN) - especially during the early stages of the illness and in younger people with the illness. However, this lack of insight doesn't always persist, even though the person remains sick or is getting worse.

    When I first developed AN as a 12-year old, I lacked insight to the illness. I felt better restricting food and got really 'high' on over-exercising. I could see I was thinner and initially it didn't worry me. I wondered why everyone around me was so worried about me. However, this lack of insight only remained for about 18 months. This was despite me having a very long history of AN. I reached a point in my early teens where I was well aware that my thinking and behaviours were unusual and unhealthy.

    Sometimes (often?) a person with AN does realise that they're sick, but they are too frightened to change and too frightened of what they will be like (and what life will be like) without the AN.

    And Charlotte raised a really important issue that you blogged about a couple of days ago: the appalling treatment some people with EDs receive - and the appalling way they are made to feel that they are 'bad', 'wilful' etc. Such treatment was used as a threat in the 1970s and 1980s in the UK, when I am sure that many doctors believed that AN is a 'choice'.

    So, I would query the issue of persisting lack of insight in more longstanding AN, and in all cases of AN. Some people are just terrified of change and terrified of punitive treatment regimes.

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  6. Vent away... This topic has been front of my mind for a while now...

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  7. I have been dying to use this for EVER.

    There are two ways to solving a problem - analytically and creatively.

    If you are solving what is known as a "closed" problem (one with only one or a limited number of solutions), analytical brains rock for "defining all the circumstances surrounding the deviation from the norm"

    For open-ended problems, creative brains win - identifying and defining objectives and any obstacles that can prevent you reaching the solution.

    Analytical thinking includes ordering, comparing, contrasting and evaluating. Creative thinking uses imagination to create a wide range of ideas, looking beyond the obvious to the illogical and unrealistic and using fluency, flexibility and elaboration...

    Anyone see where I am going with this?

    We then get into "blocks" to being unable to find the solution to the problem
    Perceptual
    Emotional
    Expressive
    Environmental
    Cultural
    Intellectual

    Cockamamie theory alert

    What if, even if the patient is aware that they are ill, the patient is unable to solve the problem (analytical, set shifting etc etc etc). Therefore the patient is cognitively aware of it but unable to find a solution to it ("Just eat" is not the answer BTW, any doctors out there.....) so rejects the premise that it as dangerous a problem as we know it is, even if they are intellectually aware of the gravity of their situation?

    Anyone following me? I have it all worked out in my head but cannot find the words to write it. Sigh

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  8. Charlotte,

    I follow you and agree with how you've conceptualized and described it.

    The key here is that we're describing a phenomenon that most parents observe and need a name for. This is not to say that the condition is absolute, or unchanging, or simple. Nor is anyone's anosognosia alike, I suspect.

    What is odd to me is that most clinicians don't recognize the term or acknowledge the existence of it - even some of the most well-trained and well-known people. I've spent years spreading the use of this term because it truly helps parents (and others) understand and defuses some of the impulse to keep asking patients "why" and trying to make them logically understand.

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  9. Phew

    I have just emailed Colleen for a mind meld, in the hopes of explaining it a bit better.

    So what you are saying is that anosognosia in a patient may be transitory?

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  10. Yes, of course!

    Transitory over a day, over the illness course, and very different levels of it.

    Our daughter, for example, was anosognosic off and on for a long time - worse when she was underfed and WORST right around weight restoration.

    Some patients have none, and some never do gain "insight" into the experience - they just move on. But that puts them at risk, I believe, because not having ever really understood what happened one is less likely to put protections in place to prevent another fall, and one is less likely to be able to hear loved ones when they start waving their arms wildly in alarm.

    But it is blindness, not stupidity - so it is understandable that if you didn't see or feel something you aren't' going to "believe" in it. The brain will find a "reason" if it doesn't have one handy, which is why it is so important not to provide "reasons" that don't exist, which has happened so much over the history of psychotherapy and popular myths about EDs.

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  11. Ah, you see, that's where I was confused. I thought it was a long lasting thing - a sort of medical condition that ran parallel to the anorexia.

    Thanks. You've made me feel a lot easier!

    xx

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  12. You know, I think you've just explained something that has confused me. I've always used the term as meaning something that was transitory and had different degrees - but I'm guessing that others may not have heard that, too - explaining why they get so apoplectic about my using it. If they think I'm saying it is something that is absolute and unfixable and it is their brain I'm talking about, or the brain of people they are using their professional skills to help, then they are hearing hopelessness and brokenness when I'm talking about compassion and healing.

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  13. Well, that's my good deed done for the day. We move on from "Treatable Brain Disorder" to "Transitory Anosognosia" - YAY.

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  14. Sweetie

    Can we put our discussion about transitory anosognosia in the Hall of Fame? It might help other idiots like me understand this is transitory?

    xx

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  15. My d was completely unaware of her illness until she had been weight restored for some time. Now she has amazing insight into her AN, she can tell me what she was thinking when she did weird things like -- hide food, stop drinking water, refuse to sit -- and she herself finds it strange and odd that she thought that way. Now she is amazingly intuitive and understanding, not only of her own emotional state, but of others as well.

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  16. ELT, that is interesting--the idea that anosognosia is an early stage symptom of the illness. I think the problem is that for many sufferers, by the time they can see that their situation is dire, not only are they afraid to change, the thought patterns are entrenched so deeply that even if they can overcome the fear, it's harder and takes longer to rewire the brain. It's like realizing that that tourniquet on your arm is a bit too tight--you might not notice it at first, but by the time you're aware of it, there's been a lot of damage to the arm. That speaks to the importance of intervention and action on the part of people outside the early stage anosognosia.



    Here's my take: I think that most of us have elements of analytical brain and creative brain in different proportions. Anorexia--probably malnutrition in general--shuts down the creative brain. I suspect it is costly to run, energy-wise, having all those neurons firing in all directions, so the brain shuts it down (along with emotions) during energy restrictions so it can power the more fundamental life-sustaining parts of the brain.

    When my daughter was sick, she really was anosognosic. Is that because she couldn't accesss her creative brain? She couldn't solve or even see the problem because she her brain flexibility was impaired? She was certainly rigid in her thinking when she was ill. And when she is well (and her mental flexibility is supple), she 'gets' it...the anosognosia seems to be gone.

    Are they linked? Or is it just coincidental? Parallel symptoms of brain health?

    Anosognosia is transitory--that makes sense.

    It's also the scary part of this. That at the time when you want them to be able to see their illness (early stage), they are unable to do so.

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  17. I knew my own personal Dr Spock would not only understand me but be able to carry my cockamamie theory one step further.

    ELT, is there a difference between energy consumption between left and right hand brain? Is this part of the Lask Nunn Frampton insula thing - the non-connection between various parts of the brain? (We may be stepping a little off topic here but hey, what fun!) Is the more analytical side of the brain the "survival" bit, hence why it stays functioning, whilst the old creative side gets left to work on half power? Is this why CRT a la Kate Tchanturia may be showing so much promise - lighting up the old creative side?

    So many questions. Sorry. xx

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  18. I don't think this is a correct way to use the term. Anosagnosia refers to things like hemilateral neglect. Anorexics at low weights may deny the thinness of their weight, or that things are a problem to others, but they are still generally aware that something is a miss. That they are not like others, that they are eating less, for example, than others. They may deny it is a problem, but they are not completely unaware of the situation, just perhaps the severity of it.

    Anosagnosia, as far as I've been taught in all of my neuroscience classes, refers to a significant, non-transient as far as I know, inability to even understand there's ANYTHING a miss.

    I think hemineglect is the best example. Someone with hemineglect can eat only 1/2 of their plate and LITERALLY not "see" the other half, until someone else turns the plate, or be asked to copy a picture of a clock, for example, and put ALL the numbers on one half of the clock. But they wont be aware of it. It is quite severe and very striking. I'm not sure that applies to anorexia. Denial of the severity to others, not wanting to let go, etc.. I think fits more with the egosyntonic nature of it. I wouldn't call it anosagnosia, and I'm not sure it is correct to do so.

    Furthermore, I was skimming the Facebook comments and the term epigenetics seems to have been misused. Epigenetic changes ARE genetic changes that are passed on, the same way genes are passed on, BUT they are not changes or modifications in the nucleotide sequence, but instead are changes in everything else, such as histone modification, or chromatic modification. These changes can regulate the temporal and spatial expression of genes. So, they are genetically passed on, and hereditary, they are just not changes in the nucleotide sequence. And they are epigenetic ONLY if they are hereditary. Lots and lots of these and other changes can occur during one's life time, that don't have the ability to be passed on (due to environment, for example).

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  19. Laura, I think your readers would GREATLY benefit from reading this article and this thread on neuroimaging. I've just come across a lot of, well, interpretations and extrapolations of shit neuroimaging studies that get people thinking and pondering, but, the empirical data just isn't there yet. The brain is not as simplistic as the media makes it out to be.

    Please read and pass it on.

    http://www.guardian.co.uk/science/2012/may/27/brain-scans-flaws-vaughan-bell?fb_action_ids=595705481133&fb_action_types=news.reads&fb_source=other_multiline

    http://www.danielbor.com/dilemma-weak-neuroimaging/

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  20. I find this discussion very timely. Just the other day my DD asked me what I thought about this condition and wether it might have any relivence to her AN. Her logic is that all 7 of her brain surguries where in that exact location.
    She is studying Music therapy at uni and has a great deal of trouble undersdtanding how she can physically see her ribs, her bones her hair loss, but that as she puts it her mind just does not get it, It does not seem real.

    It almost seems to make her feel less crazy. that there is a explanation for her behaviour.
    She has questioned many times that she does not seem to fit the mold for a typical anorexic. She hates her clothes being big on her, She wants desperatley to get into treatment, She knows something is wrong just can't seem to change it. Does any of this make sense?

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  21. Tetyana, this use in psychiatry for certain mental illnesses is not new, but it is still not that common. I wish it were as it fills an important puzzle piece for most of us. We can see that our loved one is genuinely blinded internally, and not "in denial" or just scared or defiant. The increased attention to anosognosia in mental illness offers a great deal, I believe.

    Kathee, what you are saying makes PERFECT sense to me. It also is very moving that your daughter is finding it explanatory.

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