Anosognosia - A Rallying Call for Treatment Access Advocates
The National Alliance on Mental Illness (NAMI) provides a description of anosognosia on its website. In short, anosognosia is a symptom of mental disease and is present when someone cannot perceive their brain-based condition accurately. The word’s origin is Greek, meaning “to not know a disease.” NAMI accurately points out that, although common, anosognosia is not well understood.
Understanding this symptom is critical to treating individuals who are most severely impacted by psychiatric conditions, particularly schizophrenia and the most serious forms of bipolar disorder. It may also be transiently present in those with serious substance use disorders. As a medical doctor specializing in diseases of the brain, I see how devastating this symptom can be and how it creates a barrier to treatment within medical and social service systems that must rely on adults to access care through self-determined means.
People who experience anosognosia are usually unable or unwilling to self-direct their own care because they see no illness. I hope to further the understanding and appreciation of anosognosia among providers, family caregivers, and the general public in order to improve treatment modalities and outcomes for individuals who often end up incarcerated, homeless, or dead, despite having treatable diseases.
The physical explanation for anosognosia has been recognized for decades: A dysfunction in the brain’s frontal lobes is confirmed by magnetic resonance imaging (MRI) and other objective means. When the frontal lobe is not operating correctly, persons may lose—or partially lose—the ability to “update” the way they perceive themselves. They may see themselves in a pre-illness stage and try to explain confusing or unfortunate predicaments by blaming others. The brain may also be trying to reconcile a version of reality distorted by delusions or hallucinations--elements of psychosis.
The resulting confusion may contribute to socially unacceptable behavior, sometimes including criminal acts. To combat stigma, NAMI and other advocacy organizations have historically downplayed the association between mental illness and dysfunctional behavior. Civil rights lawyers have worked tirelessly to help individuals escape hospital confinement and institutionalization.
The unfortunate results have been a traumatic rise in homelessness, criminalization of illness, and suicide. Justice has erred on the side of letting people to live or die with their freedom to suffer from their illness intact.
Individuals who don’t know they are sick and cannot understand why the world has conspired against them understandably warrant competent assistance that extends beyond being told they should get help but not understanding why or what that means. Many do not receive appropriate medical care until they go to prison and even then care is most often limited based on legally required consent.
Widely shared statistics indicate that a person in a mental illness crisis is about ten times more likely to be incarcerated than hospitalized. Our United States culture tends to resort to incarceration to manage dysfunctional behavior, despite these punitive measures being both unjust and horribly expensive.
Most informed people agree that we need radical changes in our legal and healthcare systems to coherently care for individuals with serious mental illnesses. These changes will be forwarded through a greater appreciation and acceptance of anosognosia. Compassionate help for an individual unable to perceive a crisis brewing within the brain is critical to prevent horrific outcomes. Waiting to see if the illness gets bad enough to cause dangerousness or a crime is inhumane. Understanding anosognosia is critical to understanding why assertive, proactive, and yes, sometimes “involuntary” treatment is much more humane than waiting until there is violence or justifications for criminal incarceration.
Unfortunately, facts and good arguments rarely expedite systemic change. Passion, righteous indignation, persistence, the love of mothers and “mother bear” qualities are most helpful to hasten necessary changes.
Just as the unity of moms created a successful movement through Mothers Against Drunk Drivers, Mothers of the Mentally Ill (MOMI) and other stakeholders have a potentially invaluable role to play in contributing to a powerful political movement already starting to gain some momentum.
The acceptance of anosognosia may further empower us to confront elected officials not only with our thoughts, but more importantly our feelings. The significant grief of mothers, other family members, and friends of the mentally ill is to be acknowledged and expressed. Once the grief is better processed collectively, I expect the other associated feelings can better help us to realize the political movement needed.
J. Kimber Rotchford, M.D. 12/11/2020