Schizophrenia is not black and white. It’s difficult to diagnose, its symptoms appear in at least one other psychiatric disorder, and it’s perhaps the most stigmatized mental illness.

And yet…schizophrenia is Black and White.

Numerous studies conducted over several decades have shown that Black Americans are diagnosed at higher rates of schizophrenia than white Americans. In a 2018 analysis of data from 52 different studies,1 researchers found that Black people are 2.4 times more likely to be diagnosed with schizophrenia than their white counterparts and that pattern has been consistent for the past three decades. Other studies peg that rate at three and four times more likely.2,3,4

The Past And Racial Disparities in Mental Health

According to the American Psychiatric Association, differences in rates of diagnosis can be explained by a confluence of factors in the Black community including lack of access to high-quality mental health care services, cultural stigma surrounding mental health care, discrimination, and an overall lack of awareness about mental health.5 Mental Health America, a national non-profit organization dedicated to mental health, says these factors translate into Black and African American people being more likely to experience chronic and persistent  [i.e. schizophrenia and bipolar disorder], rather than episodic [temporary periods of depression, for example], mental health conditions.

Of course, disparities exist across an eagle’s wingspan of mental illness. But the relationship between schizophrenia and Black Americans has a particularly nefarious past.

In The Protest Psychosis: How Schizophrenia Became A Black Disease, psychiatrist Jonathan Metzl wrote of the unseemly link between the mental condition and racism. Schizophrenia, he claims, was once seen as a rather benign mental disorder impacting middle-class White women.  Much later, in the 1960s and 1970s, schizophrenia developed a reputation as a violent disease, falsely linked with male Black activists during the Civil Rights movement. In 1968, the Diagnostic and Statistical Manual of Mental Disorders (DSM) listed “dangerousness” as a symptom of schizophrenia perhaps a way to justify the psychiatric treatment of Black people protesting again injustice.6,7

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More than a half-century later, the condition’s stigma remains. And that’s precisely why, for Mental Health Awareness Month, Psycom is highlighting articles and stories of schizophrenia. Throughout May, we’re shedding light and exposing bias. Schizophrenia is frequently misunderstood. One persistent myth is that the illness makes it impossible to have a job. Medication and therapy help many maintain jobs, have successful careers, and close relationships, too.

For a variety of reasons, traditional talk therapy doesn’t appeal to minority communities so we’re outlining the best psychotherapy options for Black people. We’re also amplifying the voices of Black writers who have an intimate relationship with the disorder and exploring the critical need for self-care and stress management (stress can be a trigger for psychosis) through fitness and diet.

But before we get to that here’s a look at the history of how schizophrenia became so closely associated with Black people.

What We Get Wrong About Schizophrenia

Technically, the word schizophrenia translates into “split mind”. First coined in 1911 by Swiss psychiatrist Eugen Bleuler, schizophrenia was used to describe a disorder of thought and feeling, a split in the mental process between the intellect and the external reality—emotion and cognition.8

The result of this split, he thought, was a fragmented mental process that led to symptoms first described as social withdrawal, apathy, an inability to carry out the activities of daily living, and psychotic events such as hallucinations.  In spite of Bleuler’s observations though, schizophrenia was believed to be a psychotic reaction to neglectful parenting, especially from cold, uncaring, perfectionist, and domineering mothers, rather than a disease rooted in brain pathology.

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Simon Desjardins, MD, MBA, founder of Boston-based Forsythia Behavior Health Services says the term schizophrenia has nothing to do with the actual disease. “It’s not a split mind disease at all and, in fact, psychosis for which it is known isn’t even the most prominent part of the disease; it’s the negative symptoms, specifically, the cognitive problems that are so devastating,” Dr. Desjardins explains.

To put it plainly, schizophrenia is a severe chronic mental illness and brain disorder that interferes with the ability to think clearly, relate to others, and manage emotions effectively. Experts say one of the hallmarks of schizophrenia is psychosis or a psychotic episode. Some refer to this as a psychotic break, but that suggests that symptoms come on suddenly, when they often arise gradually.

In men, psychotic symptoms often begin in the teens or 20s. In women, psychotic symptoms often begin in the 20s and 30s. A person is not considered to have schizophrenia unless symptoms last for at least six months. The National Alliance of Mental Health reports that it’s not common for schizophrenia to be diagnosed in a person younger than 12 or older than 40. It should be noted that psychotic events can be reduced and controlled with antipsychotic medication.

Symptoms can also include hallucinations, delusions, and disorganized speech, as well as emotions that seem flat, a lack of motivation and interest in activities, difficulty sustaining relationships, and making decisions.

Like all mental illnesses, schizophrenia is colorblind. Schizophrenia has nothing to do with race. It doesn’t target people from marginalized backgrounds. Risk factors include a family history of the disorder, having an older father, autoimmune system abnormalities, and drug abuse during adolescence and early adulthood. It’s also NOT an illness that targets people from marginalized backgrounds or who survived a traumatic childhood.

Schizophrenia is not a scary, violent disorder though in the minds of many it conjures up the image of a disturbed person—violently out of control, perhaps even homicidal—who must be confined or “locked up” in a psychiatric hospital or prison. This seems to be an unfortunate consequence of the disorder’s fraught history. The truth is an individual with schizophrenia is much more likely to be the victim of violence rather than the perpetrator.

Unfortunately, the media—movies as well as news reports—often portray people with schizophrenia in a negative light. Some assume homeless people seen talking out loud have schizophrenia. But as in any other community, most people with schizophrenia are not violent and live peaceful, ordinary lives, follow their treatment and support plans, don’t exacerbate their problems with alcohol or drug use and, in many cases, earn degrees, become successful in their professions, marry and have children.

Renaming Schizophrenia: A Possible Solution?

To remedy society’s understanding of schizophrenia and eliminate some of the stigma surrounding it, there’s a movement underway to have the disorder renamed. Many researchers and advocates believe the word is a misnomer that misrepresents the condition. On top of that, some say the negative connotation interferes with the ability of people diagnosed with the condition to assimilate and be accepted in society.

Some countries have already dropped the word.

In Japan, a name change was approved in 2002 from a term meaning “mind-split disease” to one that means “integration disorder.” In 2012, the Korea Psychiatric Association followed suit and began using a term meaning “attunement disorder.” Taiwan then renamed the disorder “dysfunction of thought and perception.” In other countries, including the United States, a name change is still under debate.

But what’s in a name?

The language of psychiatry not only helps mental health professionals and patients communicate between and among themselves, it helps shape the attitude of society toward those with mental health conditions. As research delves deeper and provides greater understanding of conditions like schizophrenia, commonly used and accepted terminology can become outdated.

Proponents of renaming schizophrenia say that new terminology should be adopted that better reflects our modern understanding of the condition and sheds off any false meaning, myths, or stereotypes that perpetuate stigma and do nothing to improve the lives and social integration of those who live with the disorder. “Practitioners like myself would welcome anything that can help us as a profession and as a society, in general, to destigmatize this illness and start treating our patients, not as criminals, but as sick people who need resources,” Dr. Desjardins explains.

Reflecting the Disorder As A Spectrum

Mental health professionals agree that there is no one set of absolute symptoms that show up in an individual with schizophrenia. Rather, the condition is a syndrome, a collection of symptoms that surface in different combinations in different patients for a variety of reasons. And there can be just as many different outcomes and responses to treatment among those with schizophrenia as there are different combinations of symptoms.

The use of one defining term—schizophrenia—does not reflect the spectrum of varying types and degrees of symptoms. That’s why some believe that the word spectrum or syndrome should be included in a new name, such as “Psychosis Susceptibility Syndrome” or “Psychosis Spectrum Disorder.”

“Coming up with a name that more aptly describes the pathology of this illness is a great idea,” Dr. Desjardins says. “Many people who work in the field don’t really understand it, let alone the public, so any changes that can shed light on what this collection of symptoms really is and how it affects people would be worthwhile.”

When the name of a mental health disorder such as schizophrenia changes, so can the treatment guidelines. For many with this illness, changing treatment protocols could mean staying out of prison or off the streets and being treated in a hospital, or moving from a psychiatric hospital back into the community, and receiving community-based services. These services may include non-medicinal, psycho-social interventions, such as job training or cognitive-behavioral therapy, to help a person change their behaviors and have better interactions in society.

“An unacceptable proportion of these patients are being treated in the criminal justice system when they should be treated in a hospital or through other community-based centers.” Dr. Desjardins adds. “The science is moving along at an incredible speed, and that’s fantastic in terms of developing better treatments and a real cure someday, but for now, many mental health departments throughout the country are moving in the wrong direction by cutting funding and cutting hospital beds at a time when they must be increased to truly meet the need.”

The Case Against A Name Change

Still, there are some experts who say that schizophrenia by any other name is still schizophrenia. They feel that renaming the illness is simply a matter of semantics, and nothing more than a distraction from other changes that are needed when it comes to diagnosing and treating the disorder.

It’s a big, expensive, and time-consuming job to make changes to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), a guide used by medical professionals to recognize and diagnose mental illnesses in order to provide appropriate treatment. Years of evidence-based study; debate among researchers, advocates, consumer groups, and others who voice the pros and cons of change; and economic considerations go into updating the manual and related literature. In fact, the most recent (fifth) edition of the DSM, cost about $25 million to produce. Some believe the time, money, and effort spent on renaming schizophrenia would be better spent on improving diagnoses, treatment plans, and support services.

While there are some clear benefits to a name change, the effectiveness of such a change must also be proven. The results of studies designed to determine the effects of name changes for schizophrenia in countries where it has already occurred have mostly been inconclusive.

It may simply be too early to tell. Still, for patients and those who advocate on behalf of improving the lives of people living with schizophrenia, a more appropriate name could be an important first step toward a clearer and broader understanding of the illness, more modernized treatments, and reduced stigma surrounding the disease.

“Language is incredibly important,” Dr. Desjardins believes. “And the term ‘schizophrenia’ carries with it a lot of unnecessary negativity and baggage.”

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Last Updated: May 17, 2021