A 33-year-old woman hears “brutal and frightening” voices daily but continues her college studies. A middle-aged man, who served in the Navy and has since struggled with substance abuse, spends 10 weeks homeless. And another man lives alone with “mental confusion and chaos,” yet tends to his garden. He has trouble using clocks to stay on top of medication, so instead uses a mirrored prism to track time. Three very different people, all living with schizophrenia.
Positive or Negative – When Neither Is Good
Schizophrenia is a severe brain disorder that can involve breaks with reality. The mental illness, which affects 2.4 million adults in the U.S., disrupts people’s thought processes and ability to function day to day. Untreated, schizophrenia impairs people’s ability to manage their emotions and coexist with others.
Symptoms of schizophrenia can be “positive” or “negative.” (Some people have both types.) Positive symptoms include hallucinations, delusions – sometimes paranoid, disorganized thinking and repetitive or agitated body movements.
Negative symptoms are more subtle. “Flat affect” comes across as monotone speech or a motionless, expressionless face while talking. People exhibit less and less pleasure in life and lose their ability to function normally. They neglect their hygiene and show signs of social withdrawal – becoming more and more isolated from family and friends.
Problems with decision-making, focus, comprehension and memory affect some people as well, making it that much harder to succeed at school or work or to lead an independent life.
While schizophrenia occurs in about 1 percent of the general population, the odds rise to 10 percent if a parent or sibling has it, and to roughly 50 percent if an identical twin does. Schizophrenia starts young. Typically, symptoms first show up in people between years 16 and 30, according to the National Institute of Mental Health.
Quieting a Noisy Mind
Imagine trying to ignore uninvited voices in your head. That’s the challenge for some people with schizophrenia. “Folks with schizophrenia have hallucinations – most commonly auditory,” says Tracy McDonough, an associate professor of psychology at Mount St. Joseph University in Ohio. “And oftentimes these hallucinations lead to or form the basis for delusions – mistaken beliefs.”
She describes how one man copes: “When he has a hallucination, he sits down, gets very quiet and waits for the voice to pass. He practices mindfulness.”
“There’s a mistaken assumption that all voices tell folks to do something – that’s not correct,” McDonough says. “And more importantly, there’s a big, huge misassumption that people with schizophrenia are violent – they have voices telling them to be violent.” In fact, she says, studies show that people with schizophrenia are more likely to be victims of violence than perpetrators.
Schizophrenia does come with a higher risk of suicide – about one-third of people with schizophrenia attempt it, and an estimated 5 percent succeed.
Schizophrenia: One Diagnosis – or Eight?
Last week, a newly released study in the American Journal of Psychiatry drew a lot of attention – it suggests schizophrenia isn’t a single disorder at all, but a group of eight diseases – each with its own precise, identifiable genetic basis and specific, related symptoms.
Study co-author Igor Zwir, a research associate in psychiatry at Washington University in St. Louis, explains that schizophrenia doesn’t stem from any single gene, but a combination of genes working in concert. And different combinations yield different kinds of cases. Zwir believes his study will help patients by eventually enabling doctors to prescribe personalized medicines matched to schizophrenia type.
People are anxious for signs of progress, says Zwir, who is also an associate professor in computer science and artificial intelligence at the University of Granada in Spain. He and his colleagues receive emails from people who are “really living a miserable life, because either they or their relatives suffer from schizophrenia,” he says, asking them to focus on the disease and “find solutions pretty soon.”
What Causes Schizophrenia?
Daniel Weinberger, director of the Lieber Institute for Brain Development at the Johns Hopkins School of Medicine, says the new study adds to recent gene research that offers profound insights into the basic biologic underpinnings of schizophrenia. But he doesn’t expect any immediate impact for the public.
Genes alone don’t determine who has schizophrenia. “Genes are not about fate – they’re about risk,” says Weinberger, who is also a professor of psychiatry, neuroscience and genetics at Hopkins. Environment – in a complicated interaction with genes – likely accounts for 20 to 40 percent of the risk for schizophrenia, he says.
Medication is by far the most important treatment for schizophrenia, Weinberger says, with nine of 10 people clearly better on them than off. In best cases, he says, medication allows some people to return to their previous lives before they got sick. But most people continue to have “chronic difficulties which limit their function – their job function, their social function.”
In common with other conditions, many people with schizophrenia go off their medications or take them only sporadically. Polypharmacy – regimens with multiple prescribed drugs – is another concern. Older schizophrenia drugs can have side effects like “tardive dyskinesia” – involuntary movements of the face and body. Weight gain is one side effect of newer drugs.
But the drugs help, along with social, vocational, rehabilitative cognitive and psychological treatments to help people manage and adapt.
Giving Schizophrenia a Voice
In 2011, frustrated by public perceptions of people with schizophrenia, and finding a gap when it came to their voices being heard, McDonough and colleague Lynda Crane founded the Schizophrenia Oral History Project.
“Folks with schizophrenia do have significant periods of lucidity, even eloquence and genius – just like the rest of the folks out there,” McDonough says. The project website features 17 narrators like Paul (the gardener), who talk frankly about difficult childhoods, stigma and how they’re managing day to day. Each narration includes a message for the general public.
There’s Amber, for instance: “Even though I’m schizophrenic, I’m still a person with emotions and an intelligence – and I’m capable of doing anything that any other person is capable of doing,” she says. “That’s what I would want other people to know.”