Thursday, October 11, 2012

“I’m NOT sick!”

I’ve been out of town, which made this blog very late - but when I came home and checked my mail, I learned something very interesting. My monthly NAMI newsletter had an article on a mental health condition I did not know existed.

Whenever I speak in public, I am sure to meet at least one audience member who tells me a variation of this sad story: My son/sister/brother has been schizophrenic/bipolar for 20 years. He/she won’t take medicine or go to the doctor, no matter what we do. How can we get through to him or her? We’ve tried everything!

I’ve never had a good answer. I still don’t. But at least now I can tell them what’s going on. It’s a neurological syndrome called anosognosia. The name means “to not know an illness” and it is often nicknamed “lack of insight.” People with anosognosia have actual physical damage to one or more structures in their brains which prevent them from being able to understand that anything is wrong with them.  It is not denial, stubbornness, or fear of stigma. It is anatomical damage to one or more parts of the brain and/or the connections between them - specifically, the part that allows you to think about or observe yourself. And it is NOT caused by medications: it is caused by the disease itself.

Anosognosia is also a problem with other brain dysfunctions, such as stroke, Alzheimer’s, Huntington’s or certain brain tumors. A stroke patient with anosognosia will literally swear that nothing is wrong with him even though the entire left side of his body is paralyzed! This is not a new problem or a new finding; the only new element is acknowledging that it happens to the mentally ill, as a result of the many studies that have taken place since the late 1990’s.

The damage seems to be connected to the experience of psychosis. Current figures show that it affects 50% of schizophrenics and 40% of bipolar patients with psychotic features. That is a whopping percentage! And it explains a whole lot.

Think about it. All of these people are UNABLE to comprehend that they are ill, therefore they are UNABLE to consent to or carry out treatment. According to recent surveys, this condition is the number one reason for medication noncompliance, number two being substance abuse - not side effects or lack of access, which lurk somewhere around fourth or fifth on the list.

Naturally this has profound implications for mental health policy and practices, which I intend to take up in a later blog. It is enough to point out now that when patients are given mandatory medication, they are sometimes able to regain some ability to understand their illness. Stop treatment, and that benefit goes away. So where does that leave the debate on the unfairness of mandating treatment for people who don’t want it? What does that mean for the opponents of Laura’s Law?

I’ll leave you with a great website for more information, and add it to my links:

Please check out this very enlightening series of pages.

Deborah is a public speaker and the author of Is There Room for Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness. She is currently recording it as an audiobook and CD set.  Deborah has also published two novels. Her books are available at, Kindle Editions, iBookstore, and other major vendors; or you can order them from your local bookstore. Visit her web page at, or see her catalog at She has also narrated a guided meditation CD with her husband, musician Robert Hamaker. Check out sound samples at