World Schizophrenia Awareness Day: May 24th
By Michael Dolan. Medically Reviewed by Allison Young, MD: Reviewed: November 5, 2019 8-10 minutes
A Way to Help People Understand Schizophrenia and Psychosis
Think of schizophrenia as a brain disease, say advocates.
Linda Stalters, founder and CEO of SARDAA (Schizophrenia and Related Disorders Alliance of America), was also part of a previous group that created Schizophrenia Awareness Week (SAW). “A week like this is meant to change how schizophrenia and psychosis are understood,” Stalters says. "Currently, people think it’s an elective way to behave and think, but it’s actually a brain disease, like Alzheimer’s, Parkinson’s, or autism. The neurotransmitters, the physical structure, and function of the brain change.”
There’s Historic Meaning Behind the May 24 Date
When Stalters and her former colleagues originally created the awareness week in May, they did so around the symbolism of May 24. “That’s the date it was believed that Dr. (Philippe) Pinel released the patients in France who were imprisoned and chained to the walls in the 1700s,” says Stalters. Pinel is considered a pioneer who helped initiate humane treatment of people with mental illness.
Why It Can Take Tragedy to Get Treated for Schizophrenia
The irony is not lost on her, as there are still a large number of people who either don’t receive treatment or receive substandard treatment for their schizophrenia in the criminal justice system.
“Unfortunately, it’s usually tragedy that brings people to treatment,” Stalters says. “But that tragedy may take people into the criminal justice system, which is no place for treatment. Or to facilities that house more people 200,000 people that are homeless. Because of their delusions and hallucinations, patients don’t want to go into shelters. And because of their symptoms, their behaviors could be out of the ordinary." Getting Access to Proper Schizophrenia Treatment Is Not Easy
Now with SARDAA, Stalters believes this lack of understanding has a dramatic impact on the number of people who are able to get treatment for schizophrenia. “We don’t allow people who have Alzhiemer’s — who are confused and potentially having hallucinations — to drive around disoriented and lost, or to walk around naked and shoeless in the snow. When that happens, we put out a Silver Alert. Someone with schizophrenia or psychosis doesn’t have any of that, because they have the right to refuse treatment, even though they, like the person with Alzheimer’s, does not realize that they are ill. So there’s a perception that people with schizophrenia choose to be on the street or in prison.”
Untreated Schizophrenia Is Common, and Reason for Concern
According to Stalters, over 50 percent of the people who have schizophrenia do not receive treatment for it. She says that many people who have schizophrenia, also have a condition called anosognosia — the inability to recognize that you have an illness. “If you don’t have an illness, you are not likely to seek treatment,” she says. “Early intervention is profoundly important. The National Institute of Mental Health’s RAISE study (Recovery After an Initial Schizophrenia Episode) has shown that if a person is identified early on, and parents can get them involved in a comprehensive treatment program as soon as psychosis is experienced, if they start medication right away, it curtails the length and intensity of the psychotic event. We have treatments available for other people with developmental disabilities, such as autism. They ask the person, ‘Do you want to go to school or to work?’ They give them occupational therapy and a support system to help them get through and do the best they can. But even when parents do know, and they beg for help, they can’t get it, because insurances don’t provide what people need.”
Stalters also believes that the educational opportunities that SAW brings can help to dispel other incredibly damaging assumptions about the disease. “Schizophrenia is not one illness,” she says. “It’s like calling cancer one illness. Depending on which neurotransmitters are affected in a person, it can determine how that person is going to experience the illness and what symptoms they may have. That’s why there are different medications. Some work much better than others, depending on the person.” The Best Parts of Past Schizophrenia Awareness Weeks
During previous awareness weeks, SARDAA helped organize a guided meditation online by CNN host Ismael Cala. In addition, the organization released daily education materials through their social media channels. The week not only helped raise awareness for people living with the disease and their loved ones, it inspired new ideas as well. New Ways to Think About, and Help Treat, Schizophrenia The Hearing Voices of Support initiative promotes acceptance, support, hope, and recovery for people living with schizophrenia and other related brain disorders. After conceptualizing the initiative during the 2016 awareness week, a flash mob event was created in Times Square, New York City in December of that year. The initiative then became part of an art installation in New York City during the 2017 awareness week. Busting Myths: People With Schizophrenia Are Not Violent, Dangerous In addition to trying to get as many young people early treatment as possible, these awareness campaigns hope to dispel the notion that all schizophrenics are inherently violent and dangerous. “If your mother has a heart attack, people bring over casseroles,” Stalters says. “But if your son has schizophrenia, other people say ‘Oh my gosh! Are they dangerous? I don’t want to be around them. My kid can’t be with your kid.’ But generally, people who have psychosis are the most kind, altruistic, and sensitive people."
As the next Schizophrenia Awareness Week approaches, Stalters hopes that the various educational plans in the works will help reach more of the nearly 50 percent of people with schizophrenia that do not receive treatment. “When they are not treated, schizophrenics can have paranoia and delusions, and the delusions can be all kinds of things,” Stalters says. “They may feel that people are after them, parents are trying to kill them, doctors are trying to kill them, the police or FBI are after them. Hallucinations tell them terrible things about themselves. It’s a psychic pain that they and their families go through. Families will go through enormous amount of funds to try to help their children because insurance won’t cover it,” she stresses. “People are vulnerable because we don’t treat these diseases like other brain diseases. If you have heart trouble, the hospital won’t say, ‘Come back when your heart stops.’ But if you go in and say ‘I’m feeling paranoid and anxious and depressed. I’m hearing voices.' Well, you’re not sick enough to go into the hospital and get treated. We need to stop treating schizophrenia as a mental illness and treat it as a brain illness. You can’t just ‘suck it up’ and get better. You need treatment just as you would with another brain illness.”