By Andrew Thompson
One of the most difficult, harrowing, and frustrating aspects of living with a family member who has severe or chronic mental illness is often the inability of the loved one to acknowledge that they are struggling with a mental illness. Families may struggle for years or decades trying to convince their loved one to seek help or convince them that they in fact do need help. Families suffer immensely in silence and the toll can be devastating. There is little that is more emotionally taxing than seeing a loved one struggle with a severe and chronic mental illness and feeling helpless and incapable of giving them the care they need, and seeing them unable to grasp their illness. A French neurologist, Joseph Babinski, in the early 19th century coined the term ‘anosognosia,’ which has it’s roots in the Greek words for ‘without’ and ‘knowledge.’ He coined the term to describe what he observed in many of his patients, as an inability to have any fundamental awareness or insight into their illness. He observed these phenomena amongst his patients with varying diagnoses, but most prominently with those who were struggling with psychosis and schizophrenia. The term has been in the psychological literature for over a century, yet was not taken up seriously by the psychodynamic community of the time. The predominant view in the early psychological community was that individuals suffering from schizophrenia or a psychotic episode were simply in denial of their illness. It has been said: “in the case of denial, you actually know deep down that you have a problem but you can’t handle it, so unconsciously, you forget or suppress that awareness.” Thus concluding, individuals were aware of their illness but were incapable of accepting the illness openly and frankly. However, this idea was challenged by a number of individuals in the field, who believed that the lack of insight was an essential characteristic of the diagnosis. It was not until the pioneering work in the 1970s, by a team of American psychologists led by Dr. Xavier Amador, that anosognosia was studied thoroughly and programs developed to work with this disorder. The inspiration for the majority of his research came out of Dr. Amador’s experience with his older brother Henry, who suffered from schizophrenia. Dr. Amador has written several books on the topic and his most well-known work, I AM NOT SICK, I DON’T NEED HELP!, is an excellent starting point for understanding anosognosia and gives foundational tools for working with someone who may be experiencing anosognosia. In his words, Amador would describe this disorder as such: “anosognosia is a general lack of awareness or insight into one’s illness. Simply put, the person believes that his delusions and hallucinations are real and he does not recognize that he is sick.” From his research, studying thousands of cases across the United States at the Leap Institute, which he founded to study this phenomenon, he found that nearly 50% of individuals suffering from schizophrenia, suffer from anosognosia. In addition, similar findings were found with individuals suffering from Bipolar Disorder. Most importantly, Dr. Amador worked to remove the stigma around what was traditionally considered ‘denial’ and argued that anosognosia was a core element in schizophrenia and Bipolar Disorder. Through his research, his team has argued that anosognosia is a medical condition with a root in the biological structure of the brain. Their research with Functional Magnetic Resonance Imaging (fMRI) has shown that individuals suffering from schizophrenia and bipolar show lesions in the parietal and temporal lobes of the brain, which are believed to be areas related to psychological insight. Families struggle greatly trying to work with their loved ones and live too often with tense and destructive relationships due to the inability to help a loved one recover. Amador has developed a system and perspective for dealing with a loved one with schizophrenia and he argues for a fundamentally different way of living with and i n t e r a c t i n g with a lovedone who is suffering. He believes that, “it’s essential to stop being their adversary and become their friend. It just means we have to approach them in a different way. We have to build up their trust by truly listening.” The crux of his approach is the ability to step back and truly listen to the needs of the individual who is suffering. Often as caregivers, we get lost in our needs, wants, or fears, but to truly help. Amador makes the case for using empathetic listening to build a new bond. From this kind of listening, family members will be able to help the individual set goals and work towards those, without engaging with the symptoms that are troubling. He believes that through this kind of listening and the trust that is built in the relationship, individuals can move past the anosognosia and start the process of receiving treatment. Ultimately, the road to helping a loved one with a condition such as schizophrenia or bipolar is a long and often arduous journey, but the first step down that road starts with empathy, caring, and trust.
A major problem for individuals with schizophrenia and bipolar disorder Anosognosia is the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications. This impaired awareness of illness is caused by damage to specific parts of the brain, and affects approximately 50 percent of individuals withs chizophrenia and 40 percent of individuals with bipolar disorder. Medications can improve awareness in some patients. What is impaired awareness of illness? People with impaired awareness of illness may not recognize that they are ill. Instead, they believe their delusions are real (e.g., the woman across the street is being paid by the CIA to spy on him) and that their hallucinations are real (e.g., the voices are instructions being sent by the President). Impaired awareness of illness is the same thing as lack of insight. The term used by neurologists is “anosognosia,” which comes from the Greek word for disease (nosos)and knowledge (gnosis). It literally means “to not know a disease.” How big a problem is it? Many studies of individuals with schizophrenia report that approximately half of them have moderate or severe impairment in their awareness of illness. Studies suggest that approximately 40 percent of individuals with bipolar disorder have impaired awareness of illness; this is especially true if the person also has delusions and/or hallucinations. Is this a new problem? I’ve never heard of it before. Impaired awareness of illness has been known for hundreds of years. In 1604 in his play “The Honest Whore,” Thomas Dekker has a character say: “That proves you are mad because you know it not.” Among neurologists, unawareness of illness is well known since it also occurs in some individuals with strokes, brain tumors, Alzheimer’s disease, and Huntington’s disease. The term “anosognosia” was first used by a French neurologist in 1914. However in psychiatry impaired awareness of illness has only become widely discussed since the late 1980s. Is impaired awareness of illness the same thing as denial of illness? No. Denial is a psychological mechanism that we all use, more or less. Impaired awareness of illness, on the other hand, has a biological basis and is caused by damage to the brain,especially the right brain hemisphere. The specific brain areas that appear to be most involved are the frontal lobe and part of the parietal lobe. Can a person be partially aware of their illness? Yes. Impaired awareness of illness is a relative, not an absolute problem. Some individuals may also fluctuate over time in their awareness, being more aware when they are in remission but losing the awareness when they relapse. Are there ways to improve a person’s awareness of their illness? Studies suggest that approximately one-third of individuals with schizophrenia improve in awareness of their illness when they take antipsychotic medication. Studies also suggest that a larger percentage of individuals with bipolar disorder improve on medication. Why is impaired awareness of illness important? Impaired awareness of illness is the single biggest reason why individuals with schizophrenia and bipolar disorder do not take medication. They do not believe they are sick, so why should they? Without medication, the person’s symptoms become worse. This often makes them more vulnerable to being victimized and committing suicide. It also often leads to rehospitalization, homelessness, being incarcerated in jail or prison, and violent acts against others because of the untreated symptoms. It is difficult to understand how a person who is sick would not know it. Impaired awareness of illness is very difficult for other people to comprehend. A person’s psychiatric symptoms seem so obvious that it’s hard to believe the person is not aware he or she is ill. Oliver Sacks, in his book The Man Who Mistook His Wife for a Hat, noted this problem: “It is not only difficult, it is impossible for patients with certain right-hemisphere syndromes to know their own problems... And it is singularly difficult, for even the most sensitive observer, to picture the inner state, the ‘situation’ of such patients, for this is almost unimaginably remote from anything he himself has ever known.”