The psychological impetus behind denial of mental illness is readily understandable. Mental illness carries a huge stigma. Even people who do not purposely deny the illness they know they have may unconsciously do so for the very same reason as the conscious deniers. One brings shame upon oneself, so to speak, by admitting to the illness. Also, quite apart from what others think, mental illness is a huge narcissistic injury. One feels lesser, damaged. So there are very understandable reasons to deny one is mentally ill. Note, too, that such feelings of injury may be present and coexist with any biological correlates. (Many today want to conceptualize denial as “anosognosia,” which they assert to have a biological basis. But doesn’t all mental activity?)
The question arises, though, of how a person really could deny her illness in the face of flagrant symptoms. What does she tell herself?
Here I will draw on my own experience as a person with schizophrenia who denied for decades that she was ill, even in the face of many, many episodes of clear psychosis. I completely recognized that the things I was saying and doing and feeling would be thought to amount to a diagnosis of schizophrenia; but I thought that it was not true—I didn’t really have the illness.
What did I tell myself to come to this conclusion? There were three different things. First, I thought that even though people wouldn’t admit it, everyone’s mind contained the chaos, violence, confusion, and scary beliefs that mine did. They were all just much better at managing it than I, and more polite in what they said. So my problem was not that I was mentally ill, but just that I was socially maladroit.
The second thing I told myself was rather different: while I looked mentally ill, if we knew enough we would see that I really was not. I reasoned that it was like lumps in the breast before the advent of biopsies. If you had a lump in your breast, the doctor might have told you that you have (or might have) breast cancer, but the good news is that some people with these lumps do fine—no further growth, no effect on life expectancy.
So, my thinking went, I looked like I had schizophrenia—as the woman looked like she had breast cancer—but if we knew enough, we would see that I really did not.
The third thing I told myself was that I did not have an illness because all of my so-called symptoms were things I simply chose to think or do. I was choosing, for example, to hold certain beliefs even though the evidence was not what would classically constitute “good” evidence—I had a special premium on the truth. The illness was not something happening to me, but something I was “doing.”
How did I eventually come to accept that I had schizophrenia? The first of my three rationales went by the wayside when I was treated with a new drug, olanzapine, that cleared my thoughts and mind in a way the earlier drugs hadn’t. And then I got on clozapine, which held me even more. It then occurred to me that probably many people had clear minds like this and I was not just being socially maladroit.
With this insight came a response to my second rationalization. Perhaps there are different kinds of schizophrenia. And while I probably have a more benign version (actually, my positive symptoms have been quite florid, but I have no negative symptoms), and I have also had excellent help at managing my schizophrenia, still, the schizophrenia was not equivalent to a benign breast lump, because it was disabling in a way that the latter was not. Even if my illness was a relatively benign form of schizophrenia, it was still an illness.
Finally, the third rationalization, that I was choosing to think or do things that might happen to look like schizophrenia symptoms, fell apart when I noticed something about my behavior. A friend told me that a drug we were both on made her tap her toes. Well, I was constantly tapping my toes too, but I totally resisted the idea that it was a side effect of the medicine. This was something I was choosing to do, not something that was “happening” to me. I could stop it whenever I wanted. (I overlooked the fact that within a short time, I would be doing it again, unless I constantly attended and tried to stop.)
One day I got on a new drug, and the toe-tapping stopped. It occurred to me that on some level, the toe-tapping was a side effect of the medication and not something I was choosing to do.
It became obvious to me that as much as I tried—and I tried very hard—when I got off medication, I would get symptoms. And I started to think that the delusional beliefs were like the toe-tapping—symptoms of an illness and not something I was choosing. With that belief came an acceptance that I indeed had a mental illness. (And with this acceptance, paradoxically, my illness came to define me much less.)
Narcissistic injury, I think, is what fuels most denial, whether or not there is a lesion involved. I was eventually able to see the flaws in my rationalizations because of the hard work in therapy that was involved in coming to accept the illness. What we want to understand is how a person reasons to denial and how they can be helped not to need to deny the illness. There are no medications for this at this time; many people continue to deny even when the medications have reduced or eliminated other symptoms. Getting past the need for denial is mostly a result of good therapy or other psychosocial intervention. (The importance of psychosocial approaches is of interest given recent efforts to focus on biology and—more important—to take the psychology out of lack of insight.)
Many people deny that they are mentally ill and yet accept treatment. They may reason that even though they are not ill, the medication helps with certain things they are experiencing, such as sleeplessness. So it may be that all we want or need patients to accept is that they are suffering things that are uncomfortable and that medication could help. Making them admit to the mental illness may be forcing an unnecessary humiliation on them.
Why is it important to think about how patients explain the discrepancy between what they think about their illness (or lack thereof) and what others think? There are at least two reasons. First, if the clinician understands the patient’s reasoning, he or she may be better able to address it in treatment. Second, patients’ reasoning may have implications for other issues, such as capacity to refuse treatment. Simple denial does not involve a “patently false belief” such as is arguably necessary for incapacity. But we may want to probe as well how people explain their belief that they are not ill when we explore their capacity. Is their reasoning intact? Does their reasoning involve any patently false beliefs that might vitiate capacity in other contexts?
In short, probing patients’ denial may lead to better ways to help them overcome their denial and give us insight into other issues, like capacity. Further research on denial and how it manifests in different patients would be most welcome.
Address correspondence and reprint requests to Elyn Saks, USC Gould School of Law, 699 Exposition Blvd., Los Angeles 90089–0071; email@example.com (e-mail). Commentary accepted for publication April 7, 2009 (doi: 10.1176/appi.ajp.2009.09030409).
The author has received grant support on several projects from the Greenwall Foundation and has been a consultant or co-investigator on several NIH grants.