Anosognosia: A Big Word for a Surprising Condition

When I first taught NAMI’s Family-to-Family course in 2014, my co-teacher (who was a 25-year NAMI state leader and classroom teacher) introduced me to a word I’d never heard of: anosognosia. When she defined anosognosia to us, I had a revelation so powerful it practically knocked me out of my chair. The basic definition: A symptom experienced by those with serious mental illness (SMI) in which a person cannot recognize that they have a mental illness.

For me, learning this term was a game-changer. I had experienced this in my own family and had been asked by others, “Why can’t my loved one believe me and their doctors and just do the right thing — take their meds, go to therapy and get better? Why can’t they see how odd their behavior is? Why do they refuse help?”

I had wondered this myself. My co-teacher told us about Dr. Xavier Amador and his ground-breaking book, “I’m Not Sick, I Don’t Need Help!” I read it, and my perspective changed forever.

Understanding Anosognosia

As a peer — someone with depression, from a family with a history of depression and anxiety disorders — I have nothing medical or deeply profound to add to the body of work on the subject of anosognosia. Except this: I am convinced that a broad familiarity within our society about this condition would be life-changing for people with SMI and their families. Awareness, I believe, would encourage people to offer empathy for those struggling with SMI, as opposed to the contempt or disgust many seem to exhibit.

The percentages of those with SMIs who experience anosognosia are high: 40% with bipolar disorder and, by some estimates, as high as 98% of those with a diagnosis of schizophrenia. 

SMIs like bipolar disorder and schizophrenia have their origins in a dysfunction of the frontal lobe. This is significant, as the frontal lobe is the seat of organization (or executive function) and, more importantly, self-image and self-reflection. Damage to or chemical dysfunction in the frontal lobe prevents our brains from updating our images of ourselves. Objectivity is nearly impossible, and we are unable to view our words and behavior in relation to others. The word anosognosia is actually of Greek origin, meaning without knowledge of disease or, more broadly, lack of insight.

One of the most confounding aspects of anosognosia is that the degree of the lack of insight varies from person to person as well as day to day; this can result in your loved one having some level of recognition of their illness on Tuesday and zero recognition on Thursday. Hence, this hampers our ability to get them to see their doctors or therapists or take their meds as prescribed with regularity. We might see an uptick in their mental health and behavior one week, only to see them “slip back” the next.

Changing Our Language

I have heard participants in more than one of my NAMI Family-to-Family classes say that their loved one is in denial about their mental illness. I always encourage people to reframe this kind of thinking. Their loved one is not “in denial.” And they’re not mean, stubborn, self-centered, or lazy. Absolutely not. One man even said he thought his son enjoyed his mental health condition because he had an excuse to stay broken and do nothing. As someone with a mental health disorder and with a grandparent, parent, and child with mental health challenges, I cannot believe that anyone would choose to stay untreated with their SMI. Let’s bring it back to anosognosia.

Empathy is Crucial

While an understanding of anosognosia is imperative to how we view and treat someone with a serious mental illness, the flip side is a sense of enlightenment for family and caregivers, as well. There’s no need to argue or fight, as you remind yourself that this will accomplish nothing but escalate tension and animosity. Anger does not diminish the effects of anosognosia. Nor does logic. As you can’t squeeze water from a rock, you can’t force insight onto a person experiencing anosognosia.

But you can benefit from insight. Self-care is an essential part of life with a family member with SMI. Save the energy you invested in arguing with your loved one and channel it into self-kindness. NAMI reminds us:

• You didn’t cause it.
• You can’t cure it.
• You can’t control it.
• But you can cope with it.

Give yourself a break from the frustration and disappointment of your inability to communicate with your loved one about their illness.

Spreading the Word About Anosognosia

When I talk with someone about a loved one with schizophrenia or bipolar disorder, I always ask if they are familiar with anosognosia. Sadly, all of the people I have asked have replied, “no.” The look of revelation, compassion and empathy on their faces after an explanation is a rewarding moment for me every time.

This has led me to wonder: Why aren’t practitioners explaining anosognosia to families? How much kinder, more compassionate and more patient would we be with our loved ones if we understood that their brains can't process the fact that their perception doesn’t reflect reality?

So if someone in your family — or even a close friend, neighbor, or co-worker — has a diagnosis of bipolar disorder or schizophrenia, openly discuss anosognosia with them, if they are comfortable. In fact, discuss it with anyone when the subject of mental illness comes up in conversation. Talk about it with someone whose loved one is non-compliant with their medication regimen or is refusing entry into a treatment facility. An understanding that the person is not in denial, stubborn or apathetic about their circumstances can lift a heavy weight off their shoulders. Use your personal skills and strengths to broaden awareness and generate compassion for those who, through no fault of their own, run from the outstretched hand of help.

As I address in the book I co-wrote with Dr. Terri Lyon, “Make a Difference with Mental Health Activism,” we can’t underestimate the wide-reaching impacts of personal activism, particularly in areas of mental health. Activism boosts emotional well-being and is a critical step toward ending stigma, achieving parity and increasing mental health services and support. Youcanmake a difference.

Trish Lockard has been a volunteer for NAMI Tennessee since 2014. Mental health care became her personal passion following her family’s experience with mental illness. Trish is a nonfiction editor, specializing in memoir, and a nonfiction writing coach at Strike The Write Tone. Contact Trish at [email protected].