It's Not a River In Egypt

Understanding Anosognosia, Part I

I was recently talking with an acquaintance about a seriously mentally ill family member—a young man with either Schizophrenia or Bipolar I disorder who has been non-medication compliant, in and out of hospitals, and homeless for nearly a year. During our conversation, the acquaintance made a statement I’ve heard from other people in similar conversations, and always makes me cringe:

“No one can help him unless he wants to get better.”

The reason statements like this make me cringe is because in many cases, the ill person in question is most likely suffering from a secondary, lesser-known condition called anosognosia.

I first heard the term from my friend and fellow advocate, Leslie Carpenter, in her efforts to educate the public about this critical condition and how devastating it can be for patients and families.

Anosognosia literally means “lack of insight.” In mental health and with SMIs in particular, it impairs one’s ability to recognize their own illness. The condition was first identified in 1914 and psychologists have long observed anosognosia in patients with acute psychosis who vehemently deny there is anything wrong with them despite experiencing hallucinations, delusions, displaying bizarre or disturbing behavior, and the inability to manage basic daily life skills. It’s one of the most common reasons patients aren’t med compliant and don’t seek treatment on their own. Without true and full awareness of their illness, this refusal is perfectly rational to them.

According to the Treatment and Advocacy Center:

Anosognosia impacts 60% of people with schizophrenia and 50% of people with bipolar disorder.

At least one in five people with severe mental illness are unable to recognize that they have an illness.

Anosognosia is the leading cause of treatment non-adherence for people with schizophrenia spectrum disorders.

More than 3 million adults with severe mental illness experience anosognosia in the United States.

This data means half of those with SMIs sometimes do not recognize they even have a serious illness and need treatment.

Anosognosia is not the same as denial, stubbornness, defiance, or laziness. Evidence suggests it’s a disorder of the consciousness, a neurological difference or meta-cognitive deficit, and not a choice to be and stay sick. For people unaware of their mental illness and on their own, self-initiated and directed care can mean no care at all.

It’s an understatement to say this is a large contributor to where we’re at today with our mental healthcare systemic crisis.

Many who suffer from anosognosia and lack appropriate, intensive treatments end up in a revolving door of incarceration, hospitalization, or homelessness because we’ve built a system designed for those who are able to seek voluntary care, not for those suffering a secondary condition that impairs their ability to even recognize their illness to begin with. The end result is that people with SMIs are frequently left out, literally, in the cold, homeless and living on the streets.

In the mental health community, it’s called “dying with their rights on.”

In 1973, psychiatrist Darold A. Treffert, M.D., published an article of the same name in the American Journal of Psychiatry about the increased legal restrictions on mental health professionals to hospitalize and treat their sickest patients, who, according to Treffert, were literally dying with their rights on in jails, prisons, homeless shelters, on sidewalks and beneath overpasses. Five decades after Treffert’s article, it’s only gotten worse.

The long-held argument has been that involuntary treatment for gravely ill patients is a “threat to individual freedom.” But for anyone who has ever known or loved someone with an SMI, knows these individuals already have no real “freedom” because of their illness. We see how their serious illness affects their ability to work and financially support themselves, attend school, maintain a home, enjoy hobbies, and create healthy relationships with romantic partners, family, and friends. And with anosognosia, keeps them locked in a prison of illness.

According to a 2022 article in Current Psychiatry, the consequences of untreated anosognosia and psychosis can cause:

· Recurrent psychotic relapses and progressive neurodegeneration and brain atrophy

· Treatment resistance due to frequent psychotic relapses and structural brain changes after each psychotic episode

·  Increased utilization of health care, especially emergency care

·  High risk of suicide

·  Increased risk of aggressive behavior and violence toward others

·  Functional disability (school or work)

·  Incarceration due to psychotic behavior during relapses

·  Early mortality due to neglect of physical health, and lack of response to physical cues of illness

So how do you know if a person with an SMI may also be suffering from Anosognosia? Some common symptoms:

·        Lack of awareness

People with anosognosia may deny that they have an illness, downplay its importance, or have fluctuating levels of awareness. They may also avoid talking about their condition, become frustrated when others contradict them, or miss appointments with their doctors or therapists.

·        Inaccurate insight

People with anosognosia may believe that they're fine or that nothing is wrong with them, even when there's evidence to the contrary. This inaccurate insight can cause conflicts with others, increased anxiety, and a tendency to avoid treatment. It's the most common reason people stop taking their medications.

·       Other symptoms

Rationalizing odd or troubling behavior, covering up symptoms, and recognizing some symptoms but not others. 

When dealing with anosognosia, there is no waiting for a person to “want to get better” because the disorder has already distorted the person’s brain function into thinking they’re fine, and they’re not sick at all. And while there’s no cure or clear treatment for anosognosia, it’s important to spread education and awareness about this little-known condition, and to stop waiting for these individuals to “decide to get better” on their own.

For those too ill to independently seek help, we must be ready to intervene, remove barriers to treatment, and collectively stop letting people “die with their rights on.” ~

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For more information about anosognosia, visit the Treatment and Advocacy Center or the Henry Amador Center on Anosognosia.

My next “988” column later this month will dive into HIPAA laws, civil commitments, and other barriers to helping someone get intensive mental health treatment, particularly when a person is suffering from anosognosia.

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