We continue the focus on schizophrenia with a detailed talk about one of the most disabling symptoms. It can be mistaken for stubbornness or defensiveness or pride or garden-variety denial yet it is actually a neurological condition.
Up to 60 percent of the people with schizophrenia, 25 percent of those with schizoaffective, and 50 percent of individuals with bipolar exhibit a symptom termed anosognosia, the "lack of insight" that you have an illness. So you would refuse medication because you don't think you need it: after all you're not sick.
One woman, Millie, went so far as to unscrew her capsules, pour out the drug, and screw them back together so her daughter wouldn't suspect she wasn't taking the pills.
This lack of awareness is also observed in stroke victims and is caused by frontal lobe lesions in the brain. Xavier Amador, PhD, who I interviewed here, talks about anosognosia in I Am Not Sick, I Don't Need Help, his classic guide to helping loved ones with mental illnesses accept treatment. He cites numerous research studies that directly link the frontal lobe lesions with lack of insight.
I e-mailed Amador three weeks ago to pin him down: what exactly causes the frontal lobe lesions? Why do some people with schizophrenia develop anosognosia and others do not? It cannot be a comfort to realize you were on the lucky end of the luck of the draw when it gives no family members comfort that their loved ones were on the unlucky end.
Amador has not responded.
People diagnosed with schizophrenia who have anosognosia will often given bizarre reasons called confabulations to explain any observations that contradict their belief that they're not ill. This could take the form of telling a psychiatrist you were sent to a psychiatric hospital because you were there for a physical and no beds were available in the regular hospital.
A way to explain how they could believe they are not sick is that their concept of self is stranded in time. A person often believes he can hold a job and do the other things he did before he got sick even though he winds up on a psych ward regularly because he fails to take his meds.
One example is that of a stroke victim who, when asked to draw the clock he saw on a page, was convinced he could do it yet wrote out the numbers 1 through 12 outside of the circle. He said he had no problem at all drawing the circle and told the interviewer somebody switched the drawing on him that it couldn't possibly be his own work.
To know whether your loved one has anosognosia as opposed to ordinary denial you can ask yourself the following questions:
Is the lack of insight severe and persistent? (It lasts months and years.)
Is the person's belief fixed and doesn't change after he is confronted with evidence that he is wrong?
Does he give illogical explanations or confabulations to explain away the illness?
Either way, whether the cause of the resistance to taking medication is anosognosia or simple denial, Amador's book will give you the tools to help your loved one accept treatment. It is a short book, only 250 pages and easy to read. I urge you to buy the 2010 edition because it was enhanced with new information.
For people with schizophrenia and schizoaffective and bipolar, not only does their lack of awareness relate to their illness, it often extends to their symptoms, such as delusions and hallucinations or mania. This is why someone who thinks the CIA is spying on them can actually believe it, or why a person who's gone on a spending spree doesn't realize he's manic: they lack awareness that what they are experiencing is a symptom.
"The luck of the draw" is a cruel lottery.
I'm hyper-aware that the refusal to take meds is a no-win situation and like Amador, I realize there has to be a better way to help individuals stay in treatment. He is working on the content of the schizophrenia entry in the DSM-V due out in 2012. A revision will be the indication that a psychiatrist needs to first determine his patient's risk of having anosognosia before choosing the kind of drug to prescribe.
For a person who lacks insight, a long-acting injectable or LAI for short-should be the first choice of medication.
Critics of forced treatment like Kendra's Law argue that if better treatments were in place in the community, these laws would be unnecessary. This line of reasoning would only be true if psychiatrists committed to immediately testing for agnosognosia and chose LAIs over traditional oral treatments as the first line of defense.
Also, even with this kind of treatment in the community, there is no guarantee a person will continue to show up for his shots. Anosognosia is the one truly debilitating symptom that makes it unjustly harder for a person to recover.
Amador, whose brother Henry's lack of insight failed to improved, was able to convince him to show up for his shots regularly. Amador has written a great guide that shows you how to do this. It is based on the LEAP technique-Listen-Empathize-Agree-Partner and motivational interviewing.
I'll close out this entry with related links on the topic.
The LEAP Foundation Web site can help ordinary people as well as those involved with a loved one who has a mental illness. The LEAP technique can help break the impasse in virtually an argument.
The Xavier Amador Web site offers a good introduction to this topic and his work.