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Here’s What Happened When Japan Renamed Schizophrenia

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One of the things that keeps mental illness stigma alive is that many psychiatric terms are widely misused. For example, many people still think “schizophrenia” refers to having multiple personalities or that being “psychotic” is about being violent.

In many cases, terms for mental illnesses as used by the general public have connotations held over from times when mental illness was very poorly understand. When common usage doesn’t keep pace with scientific research, fighting stigma becomes difficult: scientists learn more about mental illnesses, but this knowledge doesn’t make its way out into society.

Starting in the 1990s, a Japanese advocacy group led by families of people with schizophrenia started pushing for a radical but simple solution to this problem. They proposed that the easiest way to get rid of the outdated understanding of schizophrenia still common in the country among people without medical training was to rename the disorder entirely.

For most people in Japan, the term then used for schizophrenia, Seishin Bunretsu Byo (“mind-split-disease”) implied an untreatable disorder that people never recovered from and that made people violent and dangerous. The term was also associated with a legacy of inhumane laws present for much of the twentieth century that stripped those diagnosed with schizophrenia of their legal rights and often resulted in them being confined indefinitely in isolation.

The connotations of the term made it hard for doctors to discuss the diagnosis with their patients. In 1999, about half of all psychiatrists in the Japanese Society of Psychiatry and Neurology (JSPN) revealed a diagnosis of schizophrenia to their patients only occasionally. A mere seven percent told all their patients about the diagnosis as a rule.

As a result of this difficulty doctors had informing patients about schizophrenia, it’s estimated that as of 1997, about 167,000 patients with schizophrenia who’d spent at least a year in Japanese psychiatric wards didn’t even know their diagnosis.

So JSPN decided to rename the disorder. After all, it couldn’t possibly make the situation any worse. Starting in late 2002, schizophrenia became known as Togo Shitcho Sho (“integration disorder”) in Japan.

Over the next few months, the new term spread rapidly through the psychiatric profession. Within seven months, 78 percent of psychiatrists in Japan were using it.

As usage of the new term grew, it got easier to tell people about their diagnosis. Thirteen months out, 86 percent of doctors surveyed said they found it easier to communicate with their patients using the new term.

Based on that, you might guess more psychiatrists would start disclosing the diagnosis to their patients, and you’d be right. In 2002, 36.7 percent of patients were informed about their schizophrenia diagnosis. In 2003, that number was 65.0, and in 2004 it was 69.7.

The changes weren’t limited to the psychiatric profession. The new term also started to work its way into the general public, and into the media. In the ensuing decade-and-a-half, the image of schizophrenia in Japan has started to shed some of the historical weight burdening it down.

This year, a team led by researchers from the University of Tokyo analyzed 4677 articles about schizophrenia. They found that the portion of articles portraying people with schizophrenia as dangerous and threatening increased until the name change, then started to decrease. The same wasn’t true for articles about bipolar disorder, suggesting the timing wasn’t just coincidence.

Did renaming schizophrenia eliminate all stigma in one fell swoop? Of course not. But did it lead to real, meaningful progress? The answer appears to be yes, both in terms of how doctors and patients communicate and how the disorder is represented in the media. Words can carry deeply layered historical associations, and if we’re serious about spreading mental health awareness, we have to keep that in mind.

What d’you think? Would you like to see some psychiatric terms replaced?

Image: FreeImages.com/blogmonkey

Here’s What Happened When Japan Renamed Schizophrenia

17 thoughts on “Here’s What Happened When Japan Renamed Schizophrenia

  • May 15, 2016 at 1:30 pm
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    curious that Schizophrenia was renamed integration disorder. I wonder what kind of integration is meant by the term. Hoping someone can shed a light on this for me.

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    • May 16, 2016 at 7:19 am
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      I’m not entirely sure since I don’t speak Japanese and we’re talking about a translation of a translation (Schizophrenie -> Togo Shitcho Sho -> integration disorder). But my impression is that it’s “integration” as in the opposite of “splitting” — that it’s just a way of tweaking the translation.

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  • May 18, 2016 at 2:48 pm
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    I have felt for years that the ‘labels’ should change as science discovers more about a mental illness/injury. It is typical for patients to be told by their clinician not to worry too much about labels and diagnoses. More and more clinicians try to avoid them it seems, other than for purposes of insurance claims. But there is inherent value in someone being able to observe themselves and naming the condition they have. First, it may decrease isolation to feel that what you have has a name, has been researched, and others are out there just like you. Secondly, yes….it may decrease (or increase unfortunately) the stigma of both the clinical view (even mental health care practitioners carry prejudice), and the societies view. Thirdly, knowing your diagnoses can help you to learn even more about it as a patient.
    Yes, I would love to see some terms change. I have what is usually referred to as Complex PTSD. Even those with traditional PTSD would beneift from that last D being changed from ‘disorder’, to S for Syndrome perhaps. But Complex PTSD may better be changed to something even more distinguishing from PTSD. When I reveal (selectively) to other healthcare providers for example that I have Complex PTSD, the only thing that is heard is the PTSD. No one even knows what the Complex is. The first question I usually get is ”Are you a veteran?’ (eyeroll). No. Any PTSD really is not a mental ‘illness’ so much as an injury. Perhaps Disorder (but there’s that word again) of Extreme Stress (even then, ‘stress’ sounds like I had a bad day at work…..how about trauma?) might be the better choice but it hasn’t taken off. No one can decide on just what to call it. Hell, there’s still a slice of ignorance out there that doesn’t even think it’s real. When DSM chooses not to even give it it’s own code…..it complicates things further making it even harder for clinician and patient. Speaking of the pervasive ignorance (and where there is ignorance there will inevitably be stigma), that brings me to the last set of diagnoses that I abhor: The ‘personality disorder’ dx’s, which carry likely thee most stigma of all. The term Borderline Personality disorder should all but be castrated from mental health. It never ceases to amaze me how many from within the mental health field even, still slap that label on people who clearly have Complex PTSD/developmental trauma. I have done some investigation and seen variants in the percentage of people diagnosed with BPD who have a history of child abuse and it has consistently held somewhere between 75 and 85%. Well then guess what? It’s not a personaltiy disorder at all…..it’s complex TRAUMA.
    At the very least we should be using the CORRECT labels….and at best those labels do need to be fluid enough to morph and become more accurate with every new enlightenment the science of psychology graces us with.

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    • May 19, 2016 at 6:43 am
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      When I got diagnosed with ADHD, there was a part of me that didn’t want to be “labeled.” But there was a stronger part of me that was relieved to know “wow, there’s a name for this thing, and there are other people out there who have it!”

      I do like the idea of regularly updating names. Maybe as researchers learn more, psychiatry will move to a less discrete system that accommodates things like areas of overlap between different conditions, comorbid conditions, etc. better.

      Thanks for sharing your experience and thoughts!

      Reply
  • May 19, 2016 at 3:36 pm
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    I agree. There is an enormous difference between depression (the mood) and depression (the illness). The term Clinical Depression was helpful, but the current label Major Depressive Disorder is even better. Another problem is the fact when you have to disclose your medications to new or emergency providers, the providers (including ED doctors) see that you take X medications, so you are “crazy” and your problem is “probably due to stress”.

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    • May 21, 2016 at 8:43 am
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      True, and it’s not just depression — there’s a similar situation with anxiety disorders, and let’s not even get into what terms like “OCD” and “ADD” have come to mean colloquially. Thanks for commenting!

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  • December 22, 2017 at 10:24 am
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    Let’s hope the term integration disorder doesn’t get abused like the term Schizophrenia and end up becoming disintegration disorder ps I have a diagnosis of Schizoaffective disorder and am wondering what term I can apply to my illness to make it more acceptable

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    • December 22, 2017 at 3:19 pm
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      Yeah, there’s always the danger that new stigmas will be associated with the new name. But at least if they’re less than the old stigmas, that’s some progress.

      As far as how to talk about schizoaffective disorder in a way that doesn’t immediately create misconceptions, that’s a tough one. In situations where you don’t need an official label, maybe see if it helps just to describe it without giving it a name at all?

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  • March 15, 2018 at 12:41 pm
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    Yes, integration is an appropriate word in that it implies the holding together of the pieces of a “split” — or better, “shattered” mind. Integration means making whole. Holistic approaches are concerned with the whole person, body and mind. Schizophrenia, yes that stigmatising label, leads to people not accepting themselves as they are. Lack of self-respect leads to the person being at war with themselves. That is when the person becomes aggressive and in the extreme murderous. Look at the 2012 case in Sandy Hook in America, or the Alphen aan den Rijn case more recently in the Netherlands. We need to go further beyond words: we need to provide better, more honest and more open facts about susceptibility or proneness to psychosis. That is what the Dutch patient association Anoiksis (a Greek metaphor for Open Mind) is trying to do with their flipping booklet online Psychosis? Me? http://www.psychosegevoelig.nl/english It is not just, simply, a question of gun control!

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  • March 15, 2018 at 1:45 pm
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    The atrocities committed against people who fail to assimilate into white Christian culture go back centuries. These atrocities can be traced to the thinking of Aristotle; “ For that some should rule and others be ruled is a thing not only necessary, but expedient; from the hour of their birth, some are marked out for subjection, others for rule. “ Part V Politics By Aristotle Written 350 B.C.E Translated by Benjamin Jowett

    And; “So the art of war is a natural art of acquisition, for it includes hunting “which we ought to practice against wild beasts, and against people who will not submit;”— Greek Philosophy from Thales to Aristotle
    By Anthony Preus

    The ideals of Aristotle and his ideological predecessors were the inspiration of much of what became the Bible and Christian doctrine.

    During the witch era there was the demonological model where people who were considered not of the True Faith were burned at the stake, immersed in water resulting in drowning, and being crushed to death. Its victims were labeled as having practiced witchcraft. During this time there were professional witch-hunters.

    Later came the medical model where people were burned with chemicals and electric current, immersed it water where they sometimes died and were held against their will and labeled as “ mentally ill. It spawned professional “mental illness” finders called psychiatrists, psychologists, psychiatric nurses, and social workers. Lately there have been subsidies to create another layer called “Peer specialists”.

    Witch finders operated out of a manual called the Malleus Maleficarum or Witch Hammer.
    Since the replacement of the demonological model equivalent functionaries operate out of the more modern Diagnostic and Statistical Manuel.
    The label of Witch like all the so called medical “disorders” in the DSM should not be regarded as products of science or healthcare or having any benefit for people who have had them inflicted on them. They are products of people who want a government that does not recognize any rights as applying to the people in general. They oppose freedom and want and attempt to coerce everyone to think and act like them. To the extent they succeed they prop up their egos by the rationalization that “everybody does it”.

    These types would be much happier in a medieval total monarchy where the only right is the Divine Right of Kings, but lacking it, try to repeal the Bill of Rights and all the good ideals of the founding of the U.S..
    There are no lab tests to verify any diagnosis for a “mental illness” even though it has long been claimed so called illnesses were “just like diabetes”. Diabetes diagnosis can be verified in a lab.
    Three billion dollars were spent to find the gene to prove the inherited link that causes “schizophrenia” but no such genetic marker was found. This demonstrates that psychiatry, is just another expression of scientific racism with no more science in it than its sister pseudo-science, eugenics.
    Those who have lost their rights and been damaged by such defamation should be permitted to find redress in the courts and or awarded reparations, while those participating in maintaining the medical model should be the ones paying for the damage they’ve done harm both to those who have been labeled and the weakening to our system of rights for everyone before the law.

    http://classics.mit.edu/Aristotle/politics.1.one.html

    https://books.google.com/books?id=T9wWJcRD8tYC&pg=PA256&lpg=PA256&dq=aristotle+hunting,+an+art+which+we+ought+to+practice+against+wild+beasts,+and+against+men+who,+though+intended+by+nature+to+be+governed,+will+not+submit;&source=bl&ots=XxVP7U8l6k&sig=l7-xFiCuMlGyYivt4EJyQlpJ150&hl=en&sa=X&ved=0ahUKEwiJ8vWu5e7ZAhWM6lMKHUEhCYoQ6AEIVDAH#v=onepage&q=aristotle%20hunting%2C%20an%20art%20which%20we%20ought%20to%20practice%20against%20wild%20beasts%2C%20and%20against%20men%20who%2C%20though%20intended%20by%20nature%20to%20be%20governed%2C%20will%20not%20submit%3B&f=false

    Reply
    • March 15, 2018 at 3:31 pm
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      Actually, there’s been a lot of research done indicating that schizophrenia has a strong genetic component. I’d suggest reading the research that’s been done on the topic before criticizing it.

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      • March 16, 2018 at 2:25 pm
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        Hidebound eugenicists will create studies that under close examination have designs intended to provide the results they seek, just as research done to prove the efficacy of psychiatric drugs. Eugenics after all is pseudo-science as is psychiatry both of which appeal to people who wish to control and eliminate anyone who fails to support their rationalizations.
        Generally both pseudo-sciences are forms of scientific racism.
        Theories of genetic superiority or “fitness” fueled the
        T-4 program and the death camps in Nazi
        Germany. Those who will not admit that there is no genetic marker that can reliably be used to diagnose any so called mental disorder support any next project of genocide based on their prejudices they insist are science based.
        http://bigthink.com/devil-in-the-data/mental-illness-its-not-in-your-genes

  • March 15, 2018 at 6:00 pm
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    Regarding genes, it is true that the search for the “schizophrenic gene” has failed totally: instead MANY genes contribute collectively to the susceptibility to psychosis: “Symptoms of schizophrenia and related disorders likely arise from a perplexing interplay of social, environmental, psychological, and biological factors.” (‘Schizophrenia’s Tangled Roots’, Michael Balter, Sapiens, Crossroads, 19 July 2017). Regarding the psychological factors, in particular, see ‘Trauma and psychotic experiences: transnational data from the WHO World Mental Health Survey’, The British Journal of Psychiatry, December 31 2017, 211, 373-380.
    Regarding my claim that aggression arising from a shattered mind is due to waging war with oneself, study the case histories of Adam Peter Lanza, perpetrator of the Sandy Hook Massacre on 14 December 2012 in Connecticut, USA; and Tristan van der Vlis, who ran amok on 9 April 2011 in the Ridderhof Mall in Alphen aan den Rijn in the Netherlands. My theses are: !. Schziophrenia is not necessarily or even primarily a permanent psychosis; 2. there is a danger people affected by schizophrenia will internalize social rejection; 3. Self-stigma is the cause of reluctance to accept onesef as one is; 4. Self-rejection leads to avoiding help in the form of medicines and/or talking therapy; 5. Non-adherence and internal conflict result in damage to oneself and to others; 6. This has application to the notorious cases of schizophrenia as typically reported in the media. “Recovery — when you would not want to be anyone else other than who you are today.”(Bill MacPhee, SZ Magazine)
    Regarding “The atrocities committed against people who fail to assimilate”, as reported by Steve, there are some signs, although small, of improvement: I quote from the Address given by Leopold Finn, Consultant to Anoiksis International, to the very recent European Union Patient Empowerment Workshop at the European Parliament in Brussels, “The U.N. and the European Commission have extended Anti-Discrimination policy to include Disability. Many national governments have followed suit and passed their own legislation against discrimination along the same lines. The definition of Disability goes beyond mental or physical handicaps to include people who suffer from chronic illnesses or disorders. That people who experience the debilitating effects of mental disorders are eligible to be treated as Disabled is not generally known. The lesson here is that legislation without education is not enough. Education and knowledge are key to overcoming stigma. Campaigns like the UK’s Time To Change are helping to make mental health a subject that can be openly discussed….. We need to explain what is meant by self-empowerment….. to explain that patients have rights! Perhaps it is time to push for a Charter of Patients’ Rights.”

    Reply
  • March 15, 2018 at 8:52 pm
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    Integration is a word with generally very positive connotations. It is often considered as important to ones self healing. I think if you need a word to replace one with toxic responses,then integration is a good one. Language and culture are ridden with contextual snafus.

    Reply
    • March 16, 2018 at 2:46 pm
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      Good link Judy. I liked 7:48-7:50 especially.

      Reply

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