Schizophrenia, which affects about 1% of the population, is one of the most devastating mental illnesses and certainly one of the cruelest.
People with schizophrenia are often tormented by inner voices that may sling crippling insults or issue divine commands to harm themselves or others. Many sufferers cannot distinguish these voices from those of other people.
For years, there has been little in the way of treatment for schizophrenia, other than medication, which often comes with devastating side effects. But now greater understanding of the disorder — both from patients who have learned on their own how to live with it and from new research by scientists — has helped drive new thinking about how to treat it.
On Sunday, the New York Times featured an emotional and inspirational story about one man who has learned to manage his illness on his own. The Times‘ Benedict Carey describes how after years of torment, of being abandoned by his family, of being kicked out of college, of losing friends and dozens of jobs because he kept hallucinating insults, computer consultant Joe Holt became aware, in a moment of crushing clarity, that the voices he was hearing might not be real.
PHOTOS: Portrait of Schizophrenia
Holt had just gotten an unexpected promotion at his job. Carey reports:
“We were having a great time, laughing and celebrating, and at the end my boss says she’s going to the ladies’ room,” he said. “But just before she leaves, I hear her say something awful, just terrible — she insults me. Loudly.”
He stood there by the door, stung and confused, until she returned. The jab made no sense, given the spirit of the occasion, but it was still ringing in his ears.
“By the way, did you hear someone say,” he asked, repeating the insult.
She was dumbfounded. So was he, doing his best to pretend he was joking.
By the time he climbed back into his car, he was short of breath. Could it be that all those nasty remarks over the years, those biting insults from out of nowhere, did not exist, except in his own head?
Holt sat in the parking lot alone and wept until dark. His recovery began at that moment in 1996. Today, it remains an ongoing challenge because he still hears the voices, and they sound so real, so loud and so compelling that it can be hard for him not to respond to their taunts.
He has developed his own methods, though — ranging from self-soothing resistance to active avoidance. He uses techniques like talking back, listening to music through headphones to drown out the voices and taking medication during the worst periods. Always, he relies on his ever-supportive wife, who as Carey notes, “does not consider mental illness an adequate excuse to shirk responsibilities,” to help sustain him.
There are many people like Holt who are living with schizophrenia or other mental illnesses, who are taking charge of their care and cobbling together their own ways of dealing with unique situations. By learning from the success of these people — just like those battling addiction in 12-step groups — some researchers have begun looking at mental health care the same way that addiction experts look at recovery: as a “lifelong journey of self-treatment and discipline,” Carey writes.