Anosognosia is pretty messed up — and it messed me up good and proper!
It means “without knowledge” and refers to the lack of insight that a person suffering from a disease has about their condition. It explains why, even in an incredibly emaciated state, I was resistant to the very suggestion that I had an eating disorder — or a problem at all for that matter!
This post contains long words and science-y parts. I decided that in order to lighten the tone I would use emojis.
What is Anosognosia?
Apparently it is physiological damage to brain structures (yikes!) usually in the parietal lobe area.
It happens a lot in eating disorders such as Anorexia Nervosa (up to 80% according to Dr Vandereycken) , but also in other mental illness such as Schizophrenia (50%) and Bipolar Disorder (40%). Most of the studies on Anosognosia have been done on these populations. One study by University of Toronto found that Anosognosia severity increased with the severity of the illness — double yikes! That means the sicker people were the less likely they were to know they had a problem.
This makes a hell of a lot of sense with me. I think that there was this period of time just after the onset of Anorexia where I lost a ton of weight that I would have been open to the idea that I had an eating disorder. But it was short and because I stubbornly went away to Uni and that allowed my eating disorder to flourish, by the time my parents next saw me two months later I was adamant that there was nothing wrong with me — despite the fact I had shed an alarming amount of weight.
No matter how underweight I became, I could not comprehend that I was unwell. It made me angry should anyone suggest that I was sick. It made me even angrier should anyone suggest I have an eating disorder.
As the National Alliance on Mental Illness so aptly puts it
“Anosognosia is a common symptom of certain mental illnesses, perhaps the most difficult to understand for those who have never experienced it.”
It sounds like some special sort of crazy to be very — painfully — obviously unwell, and to not be able to see it. Even more crazy when you consider that a person with an eating disorder often (not always) loses a significant amount of body weight. Thus there are physical clues to add to the behavioral clues that something is amiss.
Again, an explanation from NAMI:
When the frontal lobe isn’t operating at 100%, a person may lose—or partially lose—the ability to update his or her self-image.
Oh … now that’s a cool explanation. Notice how they use the word update?
Now that makes more sense. If the illness means that a person’s perception of themself has not “updated” then in their minds eye, they are in the same body that they were in before the illness. i.e. They only have the last version of themselves saved — so that is what they see.
It’s a bit like software updates. Say if Apple rolls out a update but your phone has a bug and it can’t update. The rest of the world is saying things like “don’t you hate the redesign on the iPhone interface?”, and you are thinking what the hell are they talking about, my iPhone is just the same as always.
If the brain cannot update body perception due to an illness, then it makes sense that the person suffering the illness doesn’t see what the rest of the world sees when they think about or look at themselves.
It affects the brain, really?
Neuroscience is wonderful. It allows us to understand that illnesses such as eating disorders a mental illnesses that have a measurable affect on the brain. (Listen to my podcast with Dr Laura Hill to find out some more about that.)
I thought that the picture below taken from a study done in the Netherlands on people with Schizophrenia vs healthy controls was a good illustration. As you can see, the subject with “high insight” (awareness that they are ill) has different brain activity levels in the insular and inferior prefrontal lobe areas than the person with “low insight’ does. Even a dummy like me can see that means that these areas are acting differently than they would in a “normal” person’s brain.
Individuals with Anosognosia (i.e., with less ability to think about themselves) showed significantly poorer activation in several brain areas, including parts of the frontal and parietal lobes. These were statistical differences at the group level but cannot yet be used to predict Anosognosia in any given individual.
Anyhow, I am not a neuroscientist. I’m just one of those annoying people who has enough of an interest in certain things to try and read scientific studies. As most of the research has been done on other types of mental illness I am well aware that we cannot assume anything about eating disorders. There is actually an alarmingly low level of research funding for eating disorders so not really surprising that these studies are from other forms of mental illness.
What isn’t Anosognosia?
Denial. This is not denial. This is way different than denial.
Denial is when I tell myself that hubby won’t notice that I went to the Humane Society and adopted another animal. Denial is when I kid myself that I can put eyeliner on straight. Denial is when I pretend that Toblerone is just as good as it used to be and not smaller at all. Denial is when I tell myself I can go more than 120 minutes without drinking a cup of tea and still be civil.
Denial is when you know that you have a problem but you “deny” it. Anosognosia is when you don’t know that you have a problem. You can’t deny something if you don’t know it.
Denial is a psychological defense mechanism. I do this with other things all the time. It’s very different than the absolute confusion and unawareness that I felt when I had Anorexia.
Another huge difference between denial and Anosognosia is that I can absolutely spell and say denial, but even after having written Anosognosia a hundred times or more I have no idea how to spell it without checking — nor pronounce it.
What does Anosognosia explain?
It explains how inadequate spellcheck is?
Okay, it explains more than that. It explains to some extent why so many of us with eating disorders are downright stubbornly opposed to treatment.
If you think about it, if you don’t know that you are ill, refusing treatment is pretty logical! Right?
In an article for Verywell, Dr Lauren Muhlheim writes:
As far back as 1873, Ernest-Charles Lasègue, a French doctor who was one of the first to describe anorexia nervosa, wrote “’I do not suffer and must then be well,’ is the monotonous formula.”
That is different than denial. If I don’t have a broken leg I’m not going to let you put my limb in a cast. That would be ridiculous. I didn’t think I had an eating disorder so I wasn’t going to let anyone “treat” me for that either. In hindsight, I could have saved 10 years of a living hell had I done just that.
Why is it important to know about?
If you are a sufferer — you have to understand that you cannot trust your instincts around this illness because certain parts of it may be beyond your insight right now. This is why seeking treatment is important regardless of how “well” you feel.
If you are a parent/partner/friend of a sufferer — do not rely on the sufferer’s opinion of the severity of their problem. Don’t call them a liar either! They are not fobbing you off if they don not know they are sick. If they are resistant to eating they have a problem regardless of however adamant that they are they do not. Your judgement here is more important than the sufferers. You have to make the call.
You also have to do so in a way that is not going to piss them off. Remember, as far as they are concerned YOU are the crazy one because you are telling them to put a cast on what appears to them to be a perfectly healthy limb. Probably sending them this blog might be a good start, so that they can understand the concept of Anosognosia in the first place before you tell them that they have it.
What can you do as a partner/parent/friend to help?
Showing a sufferer articles such as this and bringing to their attention that Anosognosia is a thing is a good start. Expect a sassy retort or a dismissal, but don’t let that put you off. Adults sufferers in my experience are over the long term affected in a positive manner by this sort of material. Remember that sufferers generally are unhappy with the way that the feel and regardless of how resistant they are sometimes to talking about it, we do tend to listen on some levels.
The healthy brain is there, it’s just often crowded out of the superficial reactions and emotions by the eating-disorder brain. Think of the eating disorder as a kidnapper who is holding the healthy brain captive. If you talk at the kidnapper, the kidnapper will shout abuse back at you — however the hostage will still hear your voice and be comforted by it.
You talk to the sufferer, you’ll usually get the eating disorder responding to you superficially, but somewhere in their the healthy brain is listening to you. As a sufferer, whenever my mother told me to eat more my eating disorder forced me to react with anger and abuse. However, when the rage calmed down, my healthy brain would process what she had said. It took a long time, but all those little clues added up to me finally, one day, understanding that I had an illness even if I could not see it.
As my advocate friend JD once said to me, “you kill an eating disorder one paper cut at a time.”
Sources (i.e proof that I don’t just make all this stuff up)
Prigatano, George P.; Schacter, Daniel L (1991). Awareness of deficit after brain injury: clinical and theoretical issues. Oxford [Oxfordshire]: Oxford University Press. pp. 53–55. ISBN 0-19-505941-7.
“Anosognosia/anosognosic – Eating Disorders Glossary”. glossary.feast-ed.org. Retrieved 2015-06-23.