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 interacting with a loved-one 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.