Listening to schizophrenia

Photo: Small island in sea inlet.

The National Institute of Mental Health’s (NIMH) website makes it seem the mystery of schizophrenia is resolved:

“Schizophrenia is a chronic, severe, and disabling brain disorder that affects about 1.1 percent of the U.S. population age 18 and older in a given year. People with schizophrenia sometimes hear voices others don’t hear, believe that others are broadcasting their thoughts to the world, or become convinced that others are plotting to harm them. These experiences can make them fearful and withdrawn and cause difficulties when they try to have relationships with others.”

Despite the NIMH’s claim that schizophrenia is a brain disorder, many environmental influences have also been associated with this disorder. For instance, schizophrenia is linked with adverse events during the first two trimesters of pregnancy, including a mother’s exposure to viral infections, mechanical injury, stress, and toxins. It has also been tied to histories of childhood abuse and neglect, especially histories of sexual abuse, as well as racism and oppression.

Regardless of what is known about schizophrenia, stigma is still a major stumbling block for people with this disorder. Currently, most stigma campaigns use so-called “biogenetic” models of the disorder that, like the NIMH, stress the model of schizophrenia as a brain-based, genetic disorder. However, research suggests this approach to combating stigma has backfired. Rather than creating empathy for persons with schizophrenia, the authors contend “biogenetic causal theories and diagnostic labeling as ‘illness’ are … related to perceptions of dangerousness and unpredictability, and to fear and desire for social distance.”

Stigma, like all forms of discrimination, involves objectifying a group of people according to traits or behaviors for the purpose of dehumanizing them. Saying a person’s bizarre behavior is the result of biology lends itself to identifying people with schizophrenia as not only fundamentally different, but less than human.

It is more difficult to objectify persons with schizophrenia when we hear them describe in their own words what it is like to have the disorder, for how they sufferer is undeniably human.

For example, Reconceiving Schizophrenia shares how mind-boggling simple body movements are for some persons with schizophrenia. Merely walking across a room requires total mental concentration to coordinate the movements of a body that feels as foreign as a chair, mug, or any other object in the environment. While most of us have no idea how this might feel, we can empathize with the fear and anxiety such a situation causes:

“I can’t do simple habits like walking or cleaning my teeth. I have to use all my mind to do these things without knowing it and I’m not controlling it. When this starts I find myself having to use tremendous control to direct my feet and force myself round a corner as if I’m on a bicycle. I want to move and the message goes from my brain down to my legs and they will not move in the right way. What I’m worried about is that I might get myself so controlled that I will cease to be a person.”

Furthermore, while from an observer’s perspective treatment may seem helpful, for a person with schizophrenia who sees his world as hostile and unsafe, mental health services can be experienced as profoundly threatening. One black man living in the UK, who had a history of being the victim of racist attitudes, policies, and institutions, described hospitalization as an extension of the racism he had experienced:

“I had lost my ability to laugh, to be happy; the bad days deteriorated into very bad days. Morbid self-destruction remained paramount to my daily existence; talk was limited as I spent more of the time in the waste of a cocktail of medication. I was restrained on a number of occasions for outbursts. The echo of slavery became more acute, locked up, forced into menial jobs, and threatened not with the whip but a deadly needlefull of medication.”

Schizophrenia can also result in a profound sense of aloneness—a feeling that extends beyond this disorder to all members of humanity:

“I am convinced that I have schizophrenia, and I am pretty sure that I will be taking medications for the rest of my life. I am 42 years old. I’ve never married and I have no children. I have no love in my life. I have no relatives…except my parents. I am…concerned about growing old alone.”

Unlike medical disciplines such as surgery and internal medicine that treat the body, psychiatry has a unique subject: the person’s intimate experience of being a single, and at times isolated, human being in a social world. And while a broken leg has no voice, a damaged mind can speak for itself. Perhaps the words don’t always make sense; nevertheless if we listen intently, the pain, loneliness, and mistrust are identifiable—and universally understood.

Reference

Reconceiving schizophrenia. Edited by KWM Fulford, Katherine Morris, John Z. Sadler and Giovannni Stanghellini, International perspectives in philosophy and psychiatry. Oxford, UK: Oxford University Press, 2007.

© 2009 Laura K Kerr, PhD. All rights reserved (applies to writing and photography).

  • Until schizophrenia is left unmedicated, it is difficult to know what are the symptoms of the illness or condition, and what is actually the result of “schizophrenia” itself. I went from a natural grace all my life to being stiff and very awkward, graceless. My arms refuse to move when I walk (I simply do not “know” where they go). I used too be a “neatnik” — now I don’t “feel the need” to do things like shower or brush my teeth unless urged to by others. I do not know why. I do know that I have been traumatized both by brutal hospital “treatments” like restraints and seclusion and repeated IM injections of such horrible chemical restraints as Haldol (which only numb and depersonalize and further separate me from my “self”). Of course, it never helps that in my outraged, enraged reaction to such treatment — useless I know — I strip naked and defecate on the floor and smear feces, because they only label this as extreme regression and worsening psychosis! Why can they not see it for what it is: a reaction to trauma. I actually wrote in feces on the wall, a message to the doctors in shit! But no one read the words. They only washed the wall and restrained me and injected me some more…

    • You write powerfully about a horrible experience. Two convergences – chemical and physical restraints – both traumatizing in their own way. It’s amazing how many people have to devote their time and energy to overcoming the trauma caused by treatment, which too often goes unacknowledged. Thank you for sharing so openly about a very painful and scary time in your life.