Living with Schizophrenia

A law professor and research psychoanalyst advocates for her own and others' mental health.

By Any Other Name

How should we refer to people with mental illness?

Hi, Welcome to this new blog, in which we will discuss issues of living with a mental illness. Over twenty-five years ago I was given the diagnosis of "chronic paranoid schizophrenia with acute exacerbation" and my prognosis was said to be "grave." In other words I was expected to be unable to live independently, let alone to work.

I am very lucky that hasn't turned out to be my life: while the diagnosis stuck, the prognosis did not. I am Orrin B. Evans Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of California Gould School of Law; Adjunct Professor of Psychiatry at the University of California, San Diego, School of Medicine; and junior faculty at the New Center for Psychoanalysis. I have also just started a think tank at USC, called the Saks Institute for Mental Health Law, Policy, and Ethics, of which I am the Director. Our first year is devoted to the study of the use of mechanical restraints in psychiatric hospitals.

I have also been fortunate in my personal life and not just my professional. I am happily married (after many years of not even dating) and I have many good friends.

I hope there are a lot of issues we can collectively think about on this blog. I won't be able to respond to many posts directly, but I hope the conversation is good.

I wanted to start today with the dilemma I faced when approached about doing this blog: what should I call it? The Psychology Today people suggested "A Patient's Perspective." Yet a lot of people object to being referred to as patients. Many like the name "consumer," but "A Consumer's Perspective" wouldn't mean much to many people. So I settled on "Living with Schizophrenia." (Even that may be less than ideal as many people confuse schizophrenia with multiple personality disorder. The mind of someone with schizophrenia is not so much split as shattered.)

So, what should we call ourselves? To me, referring to a person as "a schizophrenic" or to people as "the mentally ill" is problematic because it makes the illness too front and center and has a strongly negative quality. In a word, it makes the illness the defining characteristic of the person. We don't call people "the cancered." And many would object to "the diabetic" (as in "the diabetic forgot to take his medicine") for the same reason.

What about "schizophrenic patient," "mentally ill patient," or "psychiatric patient?" As noted, many people object to being called "patients." They may not believe mental illness is an illness or, even if it is, that that aspect of themselves should be singled out. (To my own way of thinking, the second makes sense but not the first; but people are entitled to their own views.) Essentially, the term "mentally ill patients" is objectionable for similar reasons as "the mentally ill." Even calling us "a schizophrenic person" or "mentally ill person" may focus too much on the illness.

Given these constraints, some prefer the long phrase "person with mental illness" or "person with schizophrenia." This is cumbersome-so much so that it couldn't be used in the title to this blog. Still, it makes the important point that the illness is not who you are but something you have.

I am content with this but some want to go farther and call us "consumers." To me this is like equating mental health treatment with servicing one's car. On the other hand, it returns the power to the "patient," giving her an active role in her treatment, and implying that it is her choice whether to participate.

What about other terms? Some like "client," which I prefer to "consumer," but it does take away some of the implication of being in charge that "consumer" has. I like the term "sufferer" myself, but many object to the idea that people with mental illness are inherently--or even often--suffering.

Of course, with all of these terms we are speaking or trying to speak with respect. But many are thoughtless in their use of terms to refer to those of us with mental illness. People who wouldn't dream of using racial or ethnic slurs unreflectively call people "crazies," "nutcakes," "whackos," "whack jobs," "lunatics," "nut jobs." One of my consumer colleagues, the psychologist Fred Freese, asks people to please not use the "n" word anymore.

People with mental illness find such language hurtful. It is hard enough coming to terms with having a mental illness; how much harder given the disdain and fear many members of the public feel.

I have been challenged about the subtitle of my book, "The Center Cannot Hold: My Journey Through Madness." Why did I use the term "madness?" One reason was I didn't want to use the technical term, "schizophrenia," because of public misunderstanding of the nature of the term (again that it is the same as split personality).

I also wanted a phrase that would grab people. I could have said "My Journey Through Mental Illness" or even "My Journey Through Psychosis," but these phrases do not, to me, pack the punch of "Madness." Nor do I mind the term myself in a way that I mind the terms listed in the paragraph above. Finally, even if the term is generally objectionable, people who have mental illnesses themselves are arguably permitted to use it (as some African American people use racially charged words to refer to themselves). Using such terms without shame sends its own message.

So, what is the upshot? Some people decry the imperative toward "political correctness." I don't; I think people should be referred to as they would like to be referred to. So, if most people like the term "consumer," then that is the term I am going to use. Maybe, though, someone will come up with a better term that we haven't collectively thought of before.

Do any of you have thoughts about what words we should use? Words can be powerful and it would be great if how we speak helps to foster a world where stigma is a thing of the past.

Elyn R. Saks, J.D., Ph.D., is Orrin B. Evans Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould School of Law.

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