Shame and Blame
The Injustice of Schizophrenia

(Jan. 8, 2003) -- Joan (not her real name) lost her husband to suicide. Along with the shock and grief came bewilderment and a hovering sense of guilt. She knew he had been very depressed and acted strangely, but she didn’t understand what was happening. Told by her husband’s family that it must be her fault, Joan spent years wondering why.

Years later, her oldest child was diagnosed with paranoid schizophrenia and briefly hospitalized. Several years later, her second child received the same diagnosis (there is a strong genetic component to this disease). Only then was she informed that her husband had been suffering from paranoid schizophrenia, and that it had been in the family for generations. “It was easier to blame you than deal with the reality,” she was told.

This story is not as unusual as it should be. Schizophrenia is one of the most misunderstood diseases on the planet. The word “schizophrenia” means “to split the mind.” This has led to a popular belief that someone with schizophrenia has a split personality. This is not the case. The split is between reality and psychotic thinking.

Likewise, having a “psychotic break” is not what is often called a “nervous breakdown.” In reality there is no such thing as a “nervous breakdown.” A psychotic break occurs when the brain’s electrical circuitry breaks down. At that point the sensory impulses being received, the processes that go into making sense of the world, and the ability to communicate those experiences misfire, resulting in profoundly altered thinking and behavior. This is a physiological event, not a personality problem or an evidence that the person’s mother didn’t care enough (another old and popular excuse). No one is to blame, it is nobody’s fault. It is a result of the brain malfunctioning.

As defined by the National Alliance for the Mentally Ill (NAMI), someone with schizophrenia universally exhibits lack of insight, suspiciousness, unwillingness to cooperate, false ideas, emotional dullness, poor hygiene, poor rapport and hallucinations. In essence, this disease strikes profoundly at one’s ability to think, formulate ideas, reason, remember or concentrate. It causes delusions, hallucinations, disorganized speech or behavior and a whole realm of “negative symptoms.”

Delusions are disturbances in thought involving the misinterpretation of perceptions or experiences. Some common examples are thought broadcasting (thinking one’s thoughts are being broadcast to the world), thought insertion (someone else is putting bad ideas into one’s head), ideas of reference (things seem to have special meaning particularly for that individual) and thought blocking (belief that someone else is taking thoughts out of one’s mind).

Hallucinations involve hearing voices that give a running commentary on one’s life or behavior. Hallucinations may also involve the other senses: visual, smell, taste or touch.

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Disorganized speech and behavior refers to speech that is tangential (unrelated to the subject at hand), incoherent (sometimes called “word salad”) or blocked. Disorg-anized behavior can “range from childlike silliness and inappropriate reactions, to totally unpredictable agitation...often bizarrely disturbed” In addition, appearance may be “markedly disheveled.”

Negative symptoms “are the most important in distinguishing schizophrenia from mood disorders. These symptoms do not represent an episodic mood state, but are the consequence of a disease process which blunts the capacity to feel or respond at all. These appear as ‘blunting’ (lack of emotional expressiveness), alogia (poverty of speech), avolition (inability to initiate or follow through with goal-directed activities) and autism (inability to relate to others).”

Paranoid schizophrenia is a subtype that is characterized by “preoccupation with delusions or frequent auditory hallucinations....that are typically persecutory or grandiose and are organized into a rigid, coherent theme.”

Someone might believe that he or she is being plotted against and everything seen or heard is experienced as a part of that conspiracy. Behaviors may include: anxiety, anger, aloofness, argumentativeness, as well as attitudes of superiority. (This subtype generally does not include disorganized speech or behavior.)

Watching her much beloved children descend into the same darkness that took her husband, Joan states she was devastated. She also didn’t understand enough about the illness to know how to respond. Medications were given to her children that often didn’t help or made things worse. “These were smart kids,” she lamented, “4.0 averages. And now they can’t keep a job.”

This is often the case. Generally striking in the late teens to early twenties, this disease can incapacitate the brightest and best.

Finally, a concerned doctor directed Joan to NAMI to answer some of her questions and provide support. This changed the direction of her life. “You bet knowledge is strength!” writes Dr. Joyce Burland, Ph.D., Director of NAMI Family to Family education program in the program materials. “Educating ourselves about mental illness...spells relief. It lightens our load and gives us stamina to buck the system. It keeps us in touch with each other. This is fundamentally what family education is about. Every one of us has made a courageous journey and has something of value to teach.”

Joan spent many years with NAMI as a central focus–educating, advocating and helping families and individuals with mental illnesses.

“Sometimes people need to talk about their problems with people who know.”

She went on “My children’s illness makes me heartsick. There is an emptiness in me...you know every parent feels their kids’ pain. If I let myself, I would get really down.” With the support of NAMI she says she felt “better, I’m not as bad off as some.”

Now Joan has other focuses in her life, hobbies and friends. She is not involved with NAMI on a daily basis anymore. “What I learned from them let me go on with my own life.”

Still her children’s primary care giver, she deals with them daily, (“It is daily hurt–for them, for me.”). She worries about them. She worries about their needs, and their loneliness. “The mentally ill are lonely. Their symptoms make them often uncomfortable, even frightening, to be around.” In some, their symptoms, compounded by the fact that people tend to be afraid of what they don’t understand, can lead the mentally ill into, often profound, isolation.

Joan stated that in dealing with her children, “People do one of two things: they don’t know that they have mental illness, or they know, but believe that they ‘just need a kick in the butt; to put their mind to it.’” Her children are unable to maintain jobs, as passionately as they wish to. Joan stated, “ You need a lot of knowledge to deal with mental illness and the misunderstanding that you run into. You wouldn’t ask someone with a broken leg, or braces from polio, to put on cleats and climb a telephone pole. But since mental illness can’t be seen, especially if the individual is smart, people just don’t understand.”

Source: Gem County, Idaho Messenger Index

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