Schizophrenia is one of the more debilitating types of mental illness. Over a year ago, I wrote an article for Psych Central about living with schizophrenia. In the beginning, I featured an excerpt from E. Fuller Torrey’s, M.D., excellent book Surviving Schizophrenia: A Manual for Families, Patients and Providers, because it captures the confusion and misinformation about this disorder.
“Your daughter has schizophrenia,” I told the woman.
“Oh, my God, anything but that,” she replied. “Why couldn’t she have leukemia or some other disease instead?”
“But if she had leukemia she might die,” I pointed out. “Schizophrenia is a much more treatable disease.”
The woman looked sadly at me, then down at the floor. She spoke softly. “I would still prefer that my daughter had leukemia.”
Even though Dr. Torrey wrote this part in the book’s first edition in 1983, I think it still applies today. Though we’ve made advances in treatment and some strides in minimizing stigma, people with schizophrenia still face little empathy or even sympathy from others — in addition to the devastating symptoms they deal with on a daily basis.
That’s why, today, I’d like to share with you several excerpts from Torrey’s book in hopes that they’ll help us to better understand the disorder and be able to put ourselves in the shoes of someone with schizophrenia.
Because it’s hard. As Torrey writes, schizophrenia isn’t like a flood that washes away your possessions or a cancer with a growing tumor. We can empathize with people in such situations. Instead it’s “madness” — making it especially hard for people to make sense of what’s going on in the first place.
“…Those who are afflicted act bizarrely, say strange things, withdraw from us, and may even try to hurt us. They are no longer the same person—they are mad! We don’t understand why they say what they say and do what they do. We don’t understand the disease process. Rather than a steadily growing tumor, which we can understand, it is as if the person has lost control of his/her brain. How can we sympathize with a person who is possessed by unknown and unforeseen forces? How can we sympathize with a madman or a madwoman?” (p. 2)
But imagine, Torrey writes, if your brain started playing tricks on you, “if unseen voices shouted” at you, if you couldn’t feel emotions anymore or couldn’t reason. He quotes an individual with schizophrenia:
“My greatest fear is this brain of mine….The worst thing imaginable is to be terrified of one’s own mind, the very matter that controls all that we are and all that we do and feel.” (p. 2)
In this chapter on symptoms, Torrey lets individuals with schizophrenia speak for themselves. He features quotes from patients talking about the different types of symptoms.
For instance, people with schizophrenia commonly experience changes in their senses, whether their senses are sharpened or dulled. According to one young woman:
“These crises, far from abating, seemed rather to increase. One day, while I was in the principal’s office, suddenly the room became enormous, illuminated by a dreadful electric light that cast false shadows. Everything was exact, smooth, artificial, extremely tense; the chairs and tables seemed models here and there…Profound dread overwhelmed me, and as though lost, I looked around desperately for help. I heard people talking, but I did not grasp the meaning of the words. The voices were metallic, without warmth or color. From time to time, a word detached itself from the rest. It repeated itself over and over in my head, absurd, as though cut off by a knife.” (p. 6).
Because many experience sensory overload, they have a difficult time socializing with others. According to a young man:
“Social situations were almost impossible to manage. I always came across as aloof, anxious, nervous, or just plain weird, picking up on inane snippets of conversation and asking people to repeat themselves and tell me what they were referring to.”
Individuals also have a tough time making sense of incoming stimuli, making it impossible to focus on seemingly simple activities, regardless of their intelligence or education level. In fact, a hallmark of schizophrenia is patients’ inability to sort, interpret and appropriately respond to stimuli.
“I can’t concentrate on television because I can’t watch the screen and listen to what is being said at the same time. I can’t seem to take in two things like this at the same time especially when one of them means watching and the other means listening. On the other hand I seem to be always taking in too much at the one time and then I can’t handle it and can’t make sense of it.
I tried sitting in my apartment and reading; the words looked perfectly familiar, like old friends whose faces I remembered perfectly well but whose names I couldn’t recall; I read one paragraph ten times, could make no sense of it whatever, and shut the book. I tried listening to the radio, but the sounds went through my head like a buzz saw. I walked carefully through traffic to a movie theater and sat through a movie which seemed to consist of a lot of people wandering around slowly and talking a great deal about something or other. I decided, finally, to spend my days sitting in the park watching the birds on the lake.”
Again, this makes it incredibly hard to relate to others, which explains why people with schizophrenia withdraw and isolate themselves.
Most people associate schizophrenia with hallucinations and delusions, which are indeed common. But actually, they’re not necessary for the diagnosis. As Torrey writes, “…no single symptom is essential for the diagnosis of schizophrenia. There are many people with schizophrenia who have a combination of other symptoms, such as thought disorder, disturbances of affect, and disturbances of behavior, who have never had delusions or hallucinations.”
Auditory hallucinations are the most common type of hallucinations, and they can be intermittent or incessant.
“For about almost seven years—except during sleep—I have never had a single moment in which I did not hear voices. They accompany me to every place and at all times; they continue to sound even when I am in conversation with other people, they persist undeterred even when I concentrate on other things, for instance read a book or newspaper, play the piano, etc.; only when I am talking aloud to other people or to myself are they of course drowned by the stronger sound of the spoken word and therefore inaudible to me.” (p. 34)
Often, the voices people hear are negative and accusatory. Visual hallucinations also can be terrifying. Here’s what one mom told Torrey after listening to her son explain his visual hallucinations:
“I saw into the visual hallucinations that plagued him and frankly, at times, it raised the hair on my neck. It also helped me to get outside of my tragedy and to realize how horrible it is for the person who is afflicted. I thank God for that painful wisdom. I am able to cope easier with all of this.”
So, again, imagine that you’re unable to trust your own brain and what it’s telling you. One patient described it as the problem of using a “self-measuring ruler.” Torrey writes that “you must use your malfunctioning brain to assess the malfunction of your brain.”
Torrey says that people with schizophrenia are “heroic in their attempts to keep a mental equilibrium,” considering their disordered brain functioning. The proper response from us should be one of “patience and understanding.”
I couldn’t agree more, and I hope all of us take his advice.