Schizophrenia is a psychiatric diagnosis that carries a heavy social stigma. However, experts have also questioned the validity and utility of the label. In response, some experts and service-user groups have called for different conceptualizations and terms for those experiencing psychotic symptoms.
Doctors Matcheri Keshavan and Raquelle Mesholam-Gately are currently tackling this issue. They recently completed a project in collaboration with the Consumer Advisory Board of Beth Israel Deaconess Medical Center in Boston, MA, examining the benefits and drawbacks of renaming schizophrenia.
Matcheri Keshavan, M.D. a board-certified psychiatrist, is the Stanley Cobb Professor of Psychiatry at Harvard Medical School and Academic Head of Psychiatry and Beth Israel Deaconess Medical Center, Massachusetts Mental Health Center.
Raquelle Mesholam-Gately, Ph.D., is an Assistant Professor of Psychology in the Department of Psychiatry at Harvard Medical School. She is also a licensed clinical psychologist and neuropsychologist who directs the Consumer Advisory Board and Neuropsychology Research in the Psychosis Research Program at the Massachusetts Mental Health Center Public Psychiatry Division of the Beth Israel Deaconess Medical Center.
In this interview, they discuss what they learned about the issues surrounding the renaming of schizophrenia in their research with consumers and service users. In particular, they reflect on how this psychiatric diagnosis can impact the therapeutic alliance necessary for effective treatment and the overall quality of life of people diagnosed.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
Bernalyn Ruiz: We’re going to be talking about a particular project that you both, Dr. Keshavan and Dr. Mesholam-Gately, have led on renaming schizophrenia. But first, I’d like to learn a bit about both of you. Can you please tell us what drew you to your respective fields?
Keshavan: I’m a psychiatrist and have practiced this profession for over three decades. Many moments were kind of consciously or unconsciously drawing me towards psychiatry from early on in my medical career, including the fact that people somehow felt that they could somehow come and talk to me about their problems. I thought that that was something that was a strength. I also found their stories often even more interesting than all the organ system problems we were taking care of in medical school. The person’s life experience seemed much more captivating.
What drove me to study schizophrenia is an interesting question. When I was a third-year medical student, a patient was brought to the emergency room, and he was brought in like he was a statue in a car. He had a fixed position, standing, holding his hand up as if he was stopping something. He was mute, unable to speak. He was that way for a couple of days. He saw all of the different specialty positions, including neurologists and internists, and nothing specific was found to be the reason for his condition. Then a psychiatrist came and took one look at him and said, “this is catatonia, let’s get him ECT, and he’ll be okay.”
So he was transported to the psychiatry ward, and a course of ECT was given, and he woke up and started talking. That, to me, was the most amazing thing I had ever seen. Then he said that he was hearing voices coming from the sky. One particular voice told him that he could stop the floods in the city with his hand, which is why he was holding his hand in that kind of posture during his catatonic episode. So I asked my psychiatrist teacher what causes this and what’s happening in the brain that might be producing this kind of condition. She had no idea.
To me, it appeared like there was this condition, which was dramatic and very startling in its presentation, but there was absolutely no knowledge as to how this might come about. What kind of disease is this? Is it a brain disease? It was not even clear for the field that schizophrenia was necessarily a brain disease. This was in the late 1970s. So that is what got me interested in schizophrenia.
Mesholam-Gately: So, as you mentioned, I’m a clinical psychologist with a specialty in neuropsychology. I’ve always been fascinated by brain-behavior relationships and the multiple factors and complexities surrounding why people act, think and feel the way that they do. I believe that part of that interest for me stems from seeing the impacts of serious mental illness in a close family member and a brain tumor in another close relative.
Both of my parents worked in the mental health field. Then, for a while, I worked as a certified nursing assistant on the dementia unit of a nursing home. That was during college. Through all of those experiences, I saw that there’s still so much work to be done to help people with a variety of neuropsychiatric conditions. Not only in terms of better understanding and treating these conditions but in terms of advocacy.
That latter part, I think, is particularly relevant for mental illness. You know, while there’s no question that we need to better understand and treat and advocate for people with many health conditions, we unfortunately still live in a world that’s not always friendly to people with lived experience with mental illness. There’s often so much stigma that people with mental illness face that they can feel like they don’t have a voice, leading to marginalization and other inequities.
I think that makes advocacy for people with mental illness especially important. In my job as a psychologist working in a psychosis program at an academic medical center, I feel privileged that I can contribute not only to assessment, treatment, research, and teaching but also to advocacy efforts.
Part of that, which I think we’ll be speaking about soon, is our work with the Consumer Advisory Board and this project on renaming schizophrenia. So I think those are two examples of advocacy.
Ruiz: Can you tell the listeners about this project and the Consumer Advisory Board?
Mesholam-Gately: I joined the Consumer Advisory Board (CAB) at the end of 2012. At that point, the group had been in existence for a few years. It had been born from a wonderful initiative from the Massachusetts Department of Mental Health to expand the engagement of people with lived experience within our research center operations.
The CAB conducts mental health participatory action research with a particular emphasis on psychosis. We approach this task with the perspectives of people who have the expertise of lived experience with mental illness and people with clinical and research experience regarding mental illness, or both. Recognizing the unique strengths that each brings, it’s done as a partnership where all of our contributions are equally valued.
Our program’s research has been informed and enhanced by the involvement of the CAB at all stages of the research process. That includes generating research questions, methodology and instrument selection, recruitment guidance, conducting research activities, data review, and analysis, formulating conclusions, reviewing grant applications, and recommending dissemination strategies. In addition to the survey project on renaming schizophrenia, which we’ll be telling you about shortly, we recently completed a research project on the therapeutic alliance and its relationship with quality of life in serious mental illness.
What we have found is that not only are participatory approaches for behavioral health research feasible, but they improve the impact, reach, value, applicability, trustworthiness, and usability of the results as well as the relevance of the findings of those it aims to serve. These approaches also have been shown to expedite the dissemination of findings in clinical and real-world settings, especially for underserved populations.
Moreover, when there are authentic partnerships with people with lived experience and behavioral health researchers, not a tokenistic form of inclusion (with no ability to meaningfully influence project decisions), those partnerships honor person-centered and recovery-oriented perspectives. They recognize the expertise that’s found in lived experience, and they respect patient autonomy. With all those advantages, the hope is that these participatory approaches for psychosis will improve early identification and intervention, reduce treatment disengagement, stigma, and minority disparities, and ultimately minimize disability and improve lives. I can also share some quotes that I wrote down from CAB members about the benefits of participatory approaches to psychosis research because, to me, their perspectives were so meaningful. So, one of the members said:
“To be considered a valued member of a team, doing beneficial work contributes to recovery and can imbue greater self-respect. You do productive things. It’s a place also where we can actually put our mental health history to use. So it’s supportive but not specifically designed to be that way. Which is good because it feels a lot better to do something productive than think you’re in such rough shape that all you’re capable of doing is receiving support.”
Another person said:
“In participatory research, people with lived experience might notice some sensitive issues, which might not be recognized by researchers who had never had to deal with living with a diagnosis, they might also be a little more attuned to whether something is going to make the participant feel like a lab, guinea pig. And that holding a position that acknowledges and accepts people who have these illnesses as part of their lives is beneficial for stability. It’s an environment where the dynamic isn’t a completely distinct divide between researchers and participants, or treaters, and patients and clients. There isn’t any division of status; it creates opportunities for people in an environment and community where mental health conditions are accepted, and where they’re working on something, not just entirely focused on the fact that they have a diagnosis.”
I want to say that personally for me, this partnership with the CAB has truly made me a better, more mindful researcher, clinician, and person. I feel like this relationship has been a life-changing experience. I’m honored and humbled to be part of the group. I hope that one day, all of our research, all of our mental health research will be done in collaboration with the people we’re trying to serve. Because frankly, that’s the way it should be.
Ruiz: Let’s turn to this project, “renaming schizophrenia.” How did you arrive at this project? Were there any personal experiences in your life or work that led you to this question?
Keshavan: Maybe I can take this first. You know, in my career, I have all along wondered about the validity of the diagnostic labels that we apply to the populations we serve. This is informed by what patients have told me.
I’ll give you one example of a young woman, but many others asked similar questions. This person was in her mid-20s, had been referred to me after she had seen a couple of other psychiatrists, and had not done very well with treatment response. Let’s call her Mary. As I was getting to know her, I asked the question, “what do you think is the nature of your problem? What’s the diagnosis that people have given you?” She said:
“Look, I had problems with my attention and was not focusing well in classes in middle school. I was seen by doctors, and they said I have ADHD. And then, in high school, I started having some problems with my depression, anxiety, becoming more lonely and withdrawn. So I went to the doctors again, and they told me, ‘you have a depressive disorder, a panic disorder, and generalized anxiety disorder.’ Then I went to college, and I became more and more withdrawn and started experiencing some unusual sensations of my mind, kind of chattering and feeling like there were people inside my head talking to each other. At the same time, I had mood swings that were very severe in either direction: ecstatic and happy then irritable then, other times, deeply miserable and sad. So, the doctors said, ‘you have a bipolar disorder; it’s psychosis.’ Then time went on, and I got into treatment, had a couple of hospitalizations, and now, I only have the voices inside my head and the different people chatting with each other. I don’t have any mood swings. So I asked the doctors, what is my diagnosis, and they said, ‘you have schizophrenia.’ So basically, as you see, whenever I go to the doctors with my symptoms, they just give some Latin name to the same symptoms and call it a diagnosis. So, what is it that is new that you are going to tell me about my diagnosis? They say schizophrenia, which means split-brain and split-mind. But can you prove to me that I have a split brain? You know, can you do a test and show me that I have schizophrenia?”
That question totally humbled me. In this field, we have no idea how to label a given person’s illness correctly. If you had a medical problem, let’s say you had pneumonia. If you had cough and breathlessness and fever and you went to the doctors, they would do a chest X-ray and examine your sputum and find the pneumococcus, and they’ll say you have pneumococcal pneumonia. Or, if you had a seizure problem, they would do an EEG and look at some brainwave patterns to tell that you have a seizure disorder. Unfortunately, in psychiatry, we have not come to that point. We do not have a way of defining or naming the illness by what exactly it is. We go by collections of symptoms, and sometimes these symptoms are more like adjectives than reality. This is a very unsatisfactory state of affairs.
I was talking to my old and beloved friend, Larry Seidman, and he agreed with me; and he had been running this Consumer Advisory Board (CAB), so he asked me to join. So I started going to those meetings. The idea for a project that the CAB members could collaborate on with us came up. So I suggested this idea of a naming project.
Ruiz: You mentioned that, at times, it feels like the diagnoses are more like adjectives than reality. Could you say more about that?
Keshavan: When you say that a person is depressed or sad, it’s a description. It is not exactly an entity that you’re describing with clear-cut origins. By using terms like depressed or anxious, or psychotic, you’re basically describing a certain behavior. This, unfortunately, has an effect on the general public’s mind where it is applied in a more general way. So anybody acting unusual will become “schizophrenic,” and the term becomes an adjective in the lexicon of the general population.
When you see unusual behavior, you don’t say, “oh well, he’s an epileptic” or something like that; that is never used as an adjective. But “schizophrenic” is used as an adjective for many things, including in politics: “Congress is acting schizophrenic,” when they can’t make up their minds, for example.
Some years ago, we did a study where we looked at Twitter messages that carried the word “schizophrenia” alongside Twitter messages that had the term “cancer.” We cataloged and defined each of them based on whether they were used as adjectives or as nouns. A medical term like cancer was used as a noun more than 90% of the time and almost never as an adjective. Whereas with “schizophrenia,” it was all over the place and was used as an adjective and significant part of the time. Then we rated the messages as positive or negative. The majority of references to schizophrenia had a negative connotation. For medical terms, it was neutral.
There is this widespread use of psychiatric diagnostic terms as adjectives, attaching negative values to them.
Ruiz: Raquelle, what led you to this “renaming schizophrenia” project?
Mesholam-Gately: I’ve long been interested in reducing stigma for people with mental illness because I’ve seen the impacts of different labels on people.
The CAB started discussing developing a survey to rename schizophrenia with Dr. Keshavan, Dr. Seidman, and me around four to five years ago. We were appreciative of Dr. Keshavan’s expertise in renaming efforts worldwide, including his scholarly contributions in this area. The group had talked about the stigma associated with the word schizophrenia and how the name doesn’t accurately describe the condition. Then we all discussed the idea of renaming schizophrenia, as it was done in other countries, and how we might approach that in this country.
We thought that the next best step, in addition to a more thorough review of the literature, would be to survey a broad sample of community stakeholders about alternate names for schizophrenia. Stakeholders would include those with lived experience, family members, clinicians, researchers, and the general public.
We scoured the literature for alternate names proposed by researchers and new names for schizophrenia that have been used in other countries. One of our CAB members also proposed an alternate name that was used in our survey. In 2019, both the paper and online versions of our survey were born.
The survey included non-identifiable basic demographics, a question about whether schizophrenia should be renamed, and how stigmatizing the name is, ratings of proposed alternate names for schizophrenia. Then those ratings were repeated after neutral descriptions were provided for each alternate name. Finally, we asked survey respondents for comments and feedback, including any other potential alternate names.
Ruiz: Why are we ready now to ask this question about whether we should rename schizophrenia?
Keshavan: It’s an important question. Why is now a good time to ask this question? There are at least a couple of reasons for this.
First of all, in the last 20 to 30 years, we have learned more about the brain than ever before in the history of science. There is so much more knowledge than before that even behaviors that we currently do not fully understand in terms of their causation are now subject to the sophisticated tools that we now have in neuroscience, neuroimaging, electrophysiology, and so forth.
Secondly, there has been widespread recognition that the terms we use for psychiatric disorders, especially the diagnostic label of schizophrenia, are highly associated with stigmatizing attitudes. If you look around at the rest of the world, there are already other countries that have been bold enough to go ahead and make a change in the naming of this illness. In Japan, the term schizophrenia was replaced a few years ago by the term “integration disorder.” In Korea, the term schizophrenia was replaced by the term “attunement disorder.” In China, the term ‘disorders of thought and perception” was introduced to define schizophrenia. These are all coming from large movements by the patients and family populations themselves.
There have been some suggestions from the medical community. For example, one name that has been proposed by Jim van Os in the Netherlands is salience disorder. Another name that was suggested was dopamine dysregulation disorder. So, it’s not that the field has settled on a particular name. But, there seems to be increasing conviction that the current name is not satisfactory. So, we have made an effort to ask ourselves, is this an appropriate name? And should we be thinking of alternatives and so forth?
The third reason why now is a good time to ask this question is that the countries who have made this kind of an effort to change the names have shown that with a less stigmatizing name, such as “integrative disorder” or “attunement disorder,” doctors are more willing to talk to patients about their diagnosis and patients are more inclined to accept their diagnosis. Studies have also shown a reduction in stigma. So there are all these reasons why now is a good time to ask this question.
Why has psychiatry as an institution has been reluctant to confront this issue? At least in the United States, people, organizations, and institutions are resistant to change because changing a DSM code will create a huge amount of confusion for billing purposes, covering people’s health care through insurance, and so on. In addition, there are legal consequences of changing the name and so on. There is resistance because change is complicated. However, one has to make a beginning somewhere.
Ruiz: I’ve heard about some of these name changes that have happened, like in China and Japan, but I hadn’t heard that doctors are more likely to talk to their patients about their diagnosis, and patients are more likely to accept the diagnosis. What are your thoughts about why that is?
Keshavan: A term like “integrative disorder” does not have any connotation that there is a broken mind. When you say, someone has difficulties integrating their thoughts, that kind of explains what they are experiencing to the patients. But if you say they have a split mind, it doesn’t make sense.
Patients are more willing to understand and accept something that they can tune into and understand, as opposed to a label that doesn’t have any valid explanatory value. If I go to the doctor and he says I have hypertension or diabetes, and then I ask the doctor what is hypertension, they could say that hypertension means increased blood pressure. I can take your blood pressure and show you that you have a high blood pressure value. It immediately makes sense. Patients are more likely to accept a label that explains what they have rather than a term that gives them an adjective that they don’t agree with. For those reasons, it was not surprising that it did become the official name in Japan. It did not stick in other countries. Why might it stick now? I think we need to show research that it has value, and then it could stick.
Ruiz: Going back to the project itself, what are some of the names that were considered? What were the results of the survey?
Mesholam-Gately: There were nine alternate names in our survey, aside from schizophrenia. There was altered perception syndrome, attunement disorder, Bleuler’s syndrome, dysconnectivity syndrome, dopamine dysregulation syndrome, integration disorder, neuro-emotional integration disorder, psychosis spectrum syndrome, and salience syndrome.
We were able to recruit 1190 people to take our survey. The average age was about 45, and participants ranged from age 11 all the way to 87 years old. About two-thirds of the sample identified as female, and 25% indicated a history of psychosis. Of those with psychosis, most reported a schizophrenia spectrum diagnosis.
We saw a similar pattern reported by family members, with the majority reporting having relatives with a schizophrenia spectrum diagnosis. Of the stakeholder groups surveyed, respondents most frequently identified as family members of people with mental illness, followed by mental health providers, and then by those having lived experience of mental illness themselves. Psychologists comprised most mental health providers, though there was also meaningful representation from other types of clinicians like social workers, psychiatrists, and peer specialists.
First, the majority of survey respondents (74%) favored a name change for schizophrenia. Another important finding is that the majority of respondents found the name schizophrenia stigmatizing. On a Likert scale of 1-5, 75% of responses were either scored as a 4 (somewhat stigmatizing) or a 5 (very stigmatizing).
Of the proposed alternate names, altered perception syndrome emerged as the most favored term, followed by psychosis spectrum syndrome and neuro-emotional integration disorder. The least favored terms, aside from schizophrenia, were Bleuleur’s syndrome and salience syndrome.
I want to point out that altered perception syndrome is a term coined by a CAB member with lived experience of schizophrenia, whose name is Linda Larson. It’s the one term that has not been used as an alternative term for schizophrenia in the literature or any other country. It wasn’t just the highest-rated term across the entire sample but within each stakeholder group.
From our perspective, the popularity of this one term coined by someone with lived experience highlights how imperative it is to include the ideas and opinions of those living with a condition in all renaming efforts. That may indeed be what helps lead to a good alternate name for schizophrenia.
Apart from being non-stigmatizing, descriptive, and easy to understand, altered perception syndrome also has some face and construct validity as altered perception and information processing are core components of schizophrenia. They may accurately define the experience of those with the condition. More broadly, in the literature, mental health professionals will usually suggest that a successful name change should be clearly defined, neutral, easily understood, and illustrate the disorder’s core symptoms to increase accessibility and communicability by healthcare providers.
I also want to point out that, for the most part, after descriptions for all the alternative terms were given, support for renaming schizophrenia increased significantly, as did favorability ratings for the alternative terms. So, by describing the terms, they may have become more accessible and better understood. This may also suggest that a name change could best decrease stigma and increase knowledge of the disorder when accompanied by initiatives to educate the public.
Ruiz: In thinking about this term, altered perception syndrome, what is it about this term that you think captures people’s experience with schizophrenia? Also, how might it not, what might it be missing?
Mesholam-Gately: The name itself is straightforward to understand. It is accessible for a lot of people; it has face and construct validity. Both altered perception and information processing are core components of schizophrenia, so they accurately describe what the experience might be like for those living the condition.
At least from my perspective, I think that might be what was most appealing about that particular name. In reviewing some of the comments, there was some feedback that it’s really easy to understand what that means.
Some potential limitations brought up in the comments sections were that maybe it is too simple and doesn’t describe all of the symptoms and that perhaps some people may have a different idea of what perception means. Those are the kinds of limitations that come to mind that respondents mentioned in this survey. But overall, across all stakeholder groups, it was the clear favorite term.
Keshavan: Another limitation is that perceptual disorders are quite non-specific. There are many conditions that we traditionally do not think of as belonging to the schizophrenia syndrome have perceptual problems. The diagnosis might become very broad and non-specific. That is one potential limitation.
Also, the term syndrome might be better than a disorder or a disease because it does not commit to this being one entity. It’s still a collection of symptoms that broadly come under a perceptual disturbance, but it could be three different disorders causing this, or even ten different disorders. We do not commit ourselves. That is where science has to guide us going forward.
Mesholam-Gately: That’s a good point about using the term syndrome to capture some of that heterogeneity in terms of symptom presentations. Another thing I’ll add is that altered perception syndrome may be too non-specific. We got some comments and feedback from another CAB member that maybe we should add “thought” to the label.
Keshavan: Yeah, in fact, the Chinese have already named it the disorder of thought and perception.
Ruiz: If this were to move forward, what can we imagine would be some of the advantages or disadvantages, or maybe just unintended effects, of changing the name?
Keshavan: One advantage would be an increased acceptance of the diagnosis by our patients. One of the major challenges that we have in treating these disorders is the lack of engagement and lack of adherence. A lot of the time, they stop treatment simply because they do not agree with the diagnosis. If we have a more acceptable name, that may increase the clinicians’ comfort level talking to the patients and the patients sharing their diagnosis and taking the appropriate steps to get better. So treatment engagement would be an important advantage.
There could be some disadvantages and some unintended consequences. Any label that we come up with could be misused in a broad way. There’s also the possibility that any new name might become stigmatized, so that cannot be ruled out. Stigma originates not just from a label but the illness itself in many ways–the behaviors generated by the illness and, unfortunately, some of the undesirable symptoms might themselves contribute to the stigma, even independent of the diagnostic label that we give.
The profession has the responsibility of developing better treatments so that the disease itself can get better so that the stigma attached to the names of those diseases can get better and better. Also, it is the profession’s responsibility to investigate and get to the bottom of what causes these disorders. We’re still barely scratching the surface there. Until we do that, some level of stigma will continue to be there with whatever name we give. It’s a matter of degree. A new name is not going to take the stigma away completely.
Mesholam-Gately: What I saw in terms of comments from survey respondents is very much aligned with what Dr. Keshavan was describing. Some advantages to a name change would be to reduce stigma, helplessness, and discrimination and better represent the condition’s characteristics. Schizophrenia doesn’t at all represent what the schizophrenia experience is like. It would avoid the metaphoric use of that term, stimulate public awareness, improve the image of the condition, facilitate communications between patients and mental health providers, and hopefully foster new scientific advances and research models.
One of the disadvantages was that simply changing the name alone would be ineffective. Any new name would become stigmatized over time, and people called for public education about the term. Other commenters called for more scientific research before accepting any name change. Others brought up concerns about diagnostic criteria confusion, loss of disability payments, or insurance coverage, and some were just not satisfied with any of the alternative terms. They didn’t feel like there was anything suitable, at least at this point.
Ruiz: Certainly, some places have attempted these public campaigns to de-stigmatize. I think in the UK, there was a little bit more of a documented effort. What thoughts do you have about how effective those are, and would that be enough?
Keshavan: One needs a multi-pronged effort to reduce stigma. There is what is called a personalized stigma (when one becomes stigmatized about one’s illness), and that requires the therapist to focus on integrating the concept of illness. This involves moving from defining oneself as a schizophrenic towards someone who has schizophrenia in addition to being a good son or a brother or a husband or a family member or a worker and so forth. There is a lot more to a given individual’s life than just having a label, and that kind of recovery-oriented care would be a very important aspect of reducing stigma.
Of course, at a professional level, we have to do everything to improve the knowledge base about this illness. Improving how we understand the underlying basis of this illness and will help reduce the stigma as well. Also, better treatments would naturally go towards improving stigma. For example, when treatment did not exist for tuberculosis, tuberculosis was a highly stigmatized disease, and stigma began to go away when treatments emerged—the same thing with cancer. When I was a kid, cancer was highly stigmatized, and it was a death sentence. Not anymore. People think of cancer more as often a chronic illness to be managed instead of diseases that necessarily always kill you.
There is a professional responsibility to develop better treatments and a better understanding and the clinical responsibility of working with patients in a recovery-oriented model to reduce internalized stigma. There’s also the third part, which is to educate the public so the public understanding of these illnesses will become more based on reality as opposed to some stereotyped viewpoint.
Ruiz: I attended a talk that both of you gave a few months ago where you presented this project. During that talk, you touched on how we might consider schizophrenia and psychosis more of a spectrum of experiences. So I’m wondering, how does our knowledge of schizophrenia as a spectrum of experiences inform renaming schizophrenia?
Keshavan: We have known for a long time that many disorders in psychiatry overlap with each other in how they present to us. The case example I gave you of the young lady diagnosed with bipolar disorder today and was diagnosed with schizophrenia in a year, and then it became schizoaffective disorder, shows that these disorders keep changing even within the same individual. Between diagnosticians, these conditions are almost used interchangeably.
Increasingly, the field is becoming aware that a number of traditions share commonalities while they also have differences. For example, many symptoms are similar between schizophrenia and bipolar disorder, but there are also distinct differences. Someone with psychotic bipolar disorder might be diagnosed with schizophrenia in some situations, which might change to bipolar in others. It’s not that the disease itself has changed, but the symptoms kind of overlap and change over time.
The field is moving toward defining these as disorders that blur into one another with some overlaps just like a rainbow spectrum: Red and orange and violet, they kind of run into each other with various shades in between. In the same way, psychotic disorders might contain multiple disorders, schizophrenia, schizophreniform, delusional disorder, brief psychotic disorder, schizoaffective disorder. They all have some commonalities, but they also have some differences, so it’s better to think of them as a spectrum as opposed to independent conditions. This is true of the rest of medicine as well.
We are beginning to understand that many genes that underlie schizophrenia are also shared with autism; many genes that we see linked to schizophrenia are also related to depression, personality disorders, etc. In nature, these diseases do not exist as water-tight, isolated compartments. They are continuous. So it is more accurate to describe them as a spectrum, just like autism spectrum disorder.
Interestingly, many journals, including the journal that I edit, called Schizophrenia Research, have now changed the name to the Journal of Schizophrenia Spectrum Disorder. So there are institutional changes that parallel the clinical understanding of the spectrum nature of these illnesses.
Mesholam-Gately: I’ll just say that the DSM-5 also revised the section on schizophrenia and other psychotic disorders to schizophrenia spectrum and other psychotic disorders, kind of along the same lines. There’s momentum for that change.
Ruiz: Some people might respond to you by saying that we should just remove the label entirely. For example, Jim van Os in 2016 suggested that schizophrenia is not a useful name, that it’s stigmatizing, doesn’t hang together as a construct, and doesn’t capture the diverse and heterogeneous experiences of the people it is applied to. What is your response to this, and then how does renaming address these concerns, if it does?
Keshavan: I know Jim van Os very well. Sometimes one needs to be provocative to make a point heard in the community. I guess that’s his point. However, that could be misunderstood. If you say that schizophrenia doesn’t exist, some people might think that this illness itself doesn’t exist, but the fact of the matter is that the illness doesn’t go away by taking the name away. So, we have to make sure that we don’t make up a sweeping statement or even suggest that schizophrenia does not exist. Schizophrenia, or whatever we call it, exists because there are people who suffer and people who come for help, and we take care of them, but we need a name. So, the term schizophrenia, Jim van Os is right, may not serve the purpose as much as it was originally intended, but we have to think of an appropriate alternative name. We have discussed the various alternatives. We don’t have a perfect one, but I think this is an incremental process.
Ruiz: Related to the field’s conceptualization of schizophrenia, how does the current narrative around schizophrenia as a lifelong illness impact patients, and how might altered perception syndrome, or another name, change service user and clinician expectations? Is that even an aim or expectation of the renaming?
Mesholam-Gately: As we suggested before, schizophrenia does little to accurately illustrate the underlying neurobiology or the symptoms experienced by those living with the condition, and it’s descriptively misleading in conveying that there is a single entity involved. The term has been adopted to describe any erratic volatile behavior and has become associated with violence, hopelessness, and desperation, which leads to distorted public perception, discrimination, and prejudice. Those attitudes negatively affect the lives of those living with the condition as higher levels of stigma are linked to less social interaction, lower levels of recovery, vocational functioning, and quality of life.
We know that some Asian countries have reported benefits after adopting new diagnostic terms for schizophrenia. For example, in Japan, the change from mind-split disease to integration disorder reduced negative associations with the diagnosis, attributions of dangerousness, and negative news coverage about the illness. It also increased the endorsement of a biopsychosocial cause. Likewise, South Korea’s adoption of attunement disorder decreased prejudice and stigma.
Following the name changes in both Japan and South Korea, more clinicians were willing to disclose schizophrenia diagnoses to patients. An increased number of patients were willing to seek out treatment regimens. We are hoping that similar results might emerge from a name change for schizophrenia within our country.
Ruiz: Unfortunately, there is also provider stigma in the US, where some providers have stigmatizing views of individuals with schizophrenia or psychosis. Is there the potential to reduce provider stigma in this name change as well?
Keshavan: You mentioned the current narrative around schizophrenia being a lifelong illness and asked how does it affect patients and so on. The conceptualization of schizophrenia as if it is one entity kind of reinforces the view, or perception, wrongly, among many patients, which are in many ways reinforced by clinicians, that this is an illness that is chronic and lifelong, and there is not much hope and so on.
Many psychiatrists that I know simply say that your son or daughter has to be ill chronically and may not be able to have a functional life and so forth, and this is unfortunate. People need to realize, and the name of a spectrum or a syndrome will do a better job at this, is that there are some subgroups of this illness, with this syndrome, that might actually recover and do much better. Some might have a recurrent condition, and a small number might have a chronic illness, but you can’t say that any given individual will necessarily have to have a lifelong illness. It’s not the case. We know this through extensive research. The outcome is highly variable. Some people have a pretty good outcome, and some do not. So that is something that educators and clinicians need to emphasize through talking to patients and families.
Mesholam-Gately: I think that we can provide evidence-based and effective care in a way that instills a sense of hope in recovery rather than simply informing individuals with the illness about their symptoms and prognosis and prescribing interventions.
Dr. Keshavan and I, along with two of our colleagues, Drs. Michelle Friedman-Yakoobian and Beshaun Davis recently submitted a paper related to this topic. Kesh (who is the master of acronyms) came up with another wonderful acronym for an approach to working with people with psychosis that integrates aspects of both psychoeducational and recovery-focused models. So, Kesh, would you like to share that acronym with everyone?
Keshavan: I’m good at coming up with acronyms but not very good at remembering them. The name I came up with is called INSPIRE. This basically captures the key principles that inform how to talk about the diagnosis with our patients, which is an art as well as a science. This is important in all of medicine, and there are similar principles that are outlined in talking about cancer or other kinds of major medical problems. In psychiatry, one has to be even more thoughtful because there is so much stigma.
The diagnostic discussions have to begin with the understanding that what the patient is coming to us with would is individualized because each person’s background and situation are different. So the way we present the information will have to be individualized.
Secondly, to the extent possible, we need to normalize the symptoms to reduce stigma rather than presenting them as bizarre or crazy. Instead of asking the question, do you have paranoid thoughts? Use terms such as “mistrustful,” which might be a more normalizing language. What terms we use will be very important in creating the kinds of attitudes about illnesses that develop down the road. So that is individualization and normalization.
Also, when we present the diagnostic formulation to our patients and their families, we need to be mindful of the setting and privacy. So doing it in the presence of all the key individuals, in a team-based manner, would be helpful. Of course, sometimes, you have to dispel the misconceptions they have and provide your own viewpoints. We have to be accurate in the information we provide. We have to make sure that as we provide diagnostic information, we have all the available information from medical records, lab tests, psychometric evaluations. We have to repeat and at the same time reassure, that’s very, very important, and instill a sense of hope. Finally, we have to provide and offer empathy, give them a strategy for the future, and give them the next steps– not just leave them with a diagnosis but also provide them with a plan of action.
Ruiz: What is your goal for the project, and where do you see this going in the future?
Mesholam-Gately: So, I think that we’re hoping that the findings from our project will support the growing momentum for renaming schizophrenia. It may be viewed as a pilot for a potential broader worldwide survey with a commitment from all parties to accept the results.
We do realize that renaming schizophrenia is a complex process. It requires careful deliberation and lots of effort, and it will need to be accompanied by public education campaigns, legislative changes, and other initiatives. This is a multi-pronged process. However, we believe that the revision is well worth the effort, considering all the potential benefits we mentioned in the long run.
Keshavan: Our observations echo similar observations from other studies in Europe and Asia, and we need to develop an international consensus. Within our research, we have some limitations. For example, we did not get enough input from African-Americans and other minority stakeholders. So we would like to be able to do this in a bigger, more systematic way, but what we have done so far provides some directions for the future.
MIA Reports are supported, in part, by a grant from the Open Society Foundations
Black duck is a good metaphora for schizophrenia, so the good new name is Capsgovia
The stigma of schizophrenia begins with terrible acts and behaviours committed by some people with schizophrenia.
What follows is that everyone identified as having schizophrenia then carries the cross for those bad deeds, even though they didn’t commit those deeds themselves.
To suggest that a change of noun combined with a bigger dragnet (via the notion of a spectrum of disorders, rather than one) will reduce stigma is bizarre, unless you think stigma can be diluted like a bad taste.
A much better solution would be to have one noun for people who have committed bad deeds and another noun for people who have not committed bad deeds.
That way only the people who have committed the bad deeds must carry the cross for those deeds.
That is why we have multiple nouns for criminals. A murderer criminal and a thief criminal are all on the spectrum of criminality, but we do not insist that a minor theft criminal should be given the same noun as a rapist criminal, even though they are all on the criminal spectrum.
Why should a petty thief carry the cross for a rapist?
Schizophrenia studies have become so confused and lacking any scientifically valid basis it’s no wonder really we’re in such a mess and that genuinely sincere people come along with straight faces suggesting new nouns are the way ahead out of a surreal maelstrom they have stonefacedly co-created.
When there is no objective way to distinguish who “has schizophrenia” from who doesn’t, there is no way to actually DO a study, let alone draw legitimate conclusions from one. I agree with you, distinguishing what a person has DONE is much more useful that trying to tell them what the ARE, especially when the definition groups together people who have little to nothing in common other than certain arbitrary “symptom clusters” that are not subject to anything but the opinion of someone with letters after his/her name.
Both Consuming and Discontinuing, drugs used to treat “Schizophrenia” can cause “disturbed states of mind” and “thought disorders” even in mentally well people.
But these problems can be successfully alleviated through straightforward non drug means. IMO the term “Schizophrenia” is obstructive.
Even subjectively determining schizophrenia is flawed. as you know. A lot of real world evidence of diagnosing is suppressed (as you also know!) but it would make for fascinating reading to be able to look at the data and see things like: what percentages of people have been multiply diagnosed before and after their schizophrenia diagnosis; what happened to bring about the diagnosis; how many other diagnoses the person had before schizophrenia; how many diagnoses they had after.
Also an interesting one would be how many people who achieved non-relapsing recovery from schizophrenia by rejecting conventional drug treatments, were then rediagnosed with a personality disorder.
The gene studies of schizophrenia appear to assume that a diagnosis meets some kind of gold standard. I know that you know that too.
I would get rid of “Schizophrenia” but I wouldn’t replace it with anything else. If pushed some type of vague term like ‘temperary burnout’ might be okay.
When I came off the drugs I suffered from Extreme Anxiety and this would have driven me back onto the drugs, had I not found a Psychological means to cope.
So ‘it’ does respond to Psychology – and this can be proven.
For me, the treatments had caused the problems.
Dear lovely psychiatrist and marvellous psychologist.
It is like naming a metaphorical baby.
I have a better idea. Ask each baby what they like to be called.
I have schizophrenia. I like the name. Many do. Many more are okay with it. Used to it. And many loathe the name. Until there is a way where people can freely request what they want their illness to be written down as, we are not respecting anyone’s “freedom”. Please don’t hear me as being pointed. I am not. I am understanding your search to “make the world a better a place”. We are all feeling the call to pitch in.
However, if I may add my personal perspective, I rather like stigma.
The Early Christians were stigmatized. The Lustful were always stigmatized. The gay people were stigmatized. The unmarried mothers were stigmatized. The babies born out of wedlock were stigmatized. The pacifists always were stigmatized. The revolutionary were stigmatized. The obese were stigmatized. The Punk rockers were stigmatized. The Beat Poets were stigmatized. The Hippies were stigmatized. The Goths were stigmatized. Already a million more yet to be. Psychiatrists themselves may join this motley gathering really rather soon and maybe this is why some of them feel nervous about falling from grace. But one of my favourite Osho quotes was when he said that if he were given a choice to go to heaven or hell he would go to hell gladly, since all the interesting people would be there, the geniuses, the upstarts, the poets, the gurus, the artists, the libertines, the free. Who the hell would want to swap that crowded party for bland conventional heaven?
I feel the attempt to tease my schizophrenia knowingness out of my hands is akin to a mass baptism. A sort of white nighty whitewash of the bad treatment the past decades did. But treatment is not the dis-ease. Treatment from a violent spouse is not the partner.
I worry that some parts of psychiatry are in a hurry to absolve themselves of the legacy of bad treatment by “honouring” that something did go horribly wrong with the care of schizophrenics, but rather than just put it down to inept or bad treatment some seem to want to speed over that discussion with a polite cough and point the finger of blame at the alphabetical arrangement of letters that spell the word “schizophrenia”, as if the word is at fault for the bad treatment.
As if a violent spouse has decided that his partner should change her name from Joan to Barbara, a much nicer name.
So, there seems a prevailing assumption at this time that everyone is in a rush to not be stigmatized. As if everyone wants welcomed in the bosom of the church. What I am wondering is that if someone with schizophrenia dares to refuse to be converted into the new orthodoxy, what then?
“They get stigmatized for just wanting to carry on calling themselves schizophrenic?”
I’m feeling woozy with my own comment. Its gone a bit box within a box. But I dont mind. Its more interesting.
I like my “schizophrenia” word to sound as it does. It is a crucifying illness. I dont want it called a fluffy evangeligally air brushed name. Any more than someone with PTSD would want their word changed to “rough day disorder”.
I do understand that many people who have schizophrenia do not like the word schizophrenia and would like a rebranding. They should be free to choose. And so should I. The world is a huge place. There is enough room in it for the schizophrenics from both sides of this debate to co-exist harmoniously and respectfully. It is up to some new innovative kind of psychiatric establishment to find a way to let such freedom of choice flourish.
Back to stigma. I sense it has become used as a poster to galvanize moves that seem to be about entirely different things.
I am okay about the fact some people feel jittery around my schizophrenic diagnosis. I may not if I was not of an independent temperament. If I was a cuddly people person who might fret that someone was jumping to conclusions about me. So I am often oblivious if stigma is in the air, as would be a leather clad biker. I like being treated different. Because I am different. Because in the long epic history of the multiverse there has only been, and only ever shall be, one me. And the same applies to you. But many people derive comfort from being cuddled and all thought all the same. And so stigma matters more to them. They find it appalling. To be separated from the tribe. But I am more poetic or artistic. I need to observe at a distance. I even need to long. Stigma, which is separation, links to longing. And longing links to passion. And passion links to art.
It is not that I have a sign on my back. I crave acceptance and so stigma can run against that. But I dont want heaven’s bland acceptance, which would disolve me in a white baptismal nighty. I want the acceptance I want, not what some study or paper wants for me.
(I have to stop writing now because my schizophrenia is saying to keep hush hush. I tend to say too much(.
That’s some beautiful writing.
I have a suggestion, instead of renaming “schizophrenia.” Why don’t you instead diagnose people based upon the type of “psychosis” they have.
For example, “psychosis” created with the antidepressants and/or antipsychotics should be diagnosed as “anticholinergic toxidrome.”
And if someone is suffering from the negative symptoms of “schizophrenia,” and is taking antipsychotics, this should actually be diagnosed as “neuroleptic induced deficit syndrome.”
Both of these medically known ways to create the “schizophrenia” symptoms are missing as billable diagnostic categories in the current DSM5, by the way.
Just a quick note, the only way I know of how to differentiate between an anticholinergic toxidrome induced psychosis, and “schizophrenia” et al, is whether the client is “hyperactive” or “inactive.” And sleeping too much can NOT qualify as “inactive,” since the antipsychotics make everyone sleep too much.
“Inactive” or “hyperactive?” – the “mental health” workers need to be taught to ask this question – and wean people off the drugs, if “hyperactive” is the answer.
As to “psychosis” that results from other pharmaceutical or street drugs, call that “drug induced psychosis disorder.”
As to “mania” that is created with the ADHD drugs and antidepressants, call that “drug induced mania disorder” or “drug withdrawal induced mania disorder.”
As to “psychosis” that results from sleep deprivation, call that “sleep deprivation induced psychosis disorder.”
As to “psychosis” that results from psych drug withdrawal, call it “drug withdrawal induced super sensitivity manic psychosis disorder.”
As to “psychosis” that results from child abuse / SRA / rape or other traumatic experiences – – and this is the majority of the psychiatrists’ and psychologists’ clients – – call that “trauma induced psychosis disorder.” Or, better yet, just treat legitimate traumatic experiences for what they are, instead of calling such “psychosis.” And the psychologists and psychiatrists should never forget, they are “mandatory reporters,” who are legally required to report such crimes to the police. But they’ve done the opposite, instead, for decades, or longer.
Nonetheless, you get the idea. And by more specifically and truthfully diagnosing people’s medically unprovable “psychosis,” the psychiatrists might be able garner insight into what needs to be done, to actually help their clients.
And since none of those types of “psychosis” is of a genetic nature – and there are likely more causes of what gets called “psychosis,” I know a dream was called “psychosis,” according to my psychologist’s medical records. But I absolutely agree with you, those lies about people having “life long, incurable, genetic mental illnesses” – since there is zero proof any of that is true – are downright evil, hope destroying lies.
Just renaming “schizophrenia” – which is not a scientifically valid disease entity anyway – is rather stupid. Since it does nothing to help either the psychiatrist, nor their client, garner insight into the etiology of the client’s distress or symptoms. Quite to the contrary, the “invalid” DSM disorders literally misdirect people, away from finding the actual cause of their distress or symptoms.
But those of us who were made “hyperactive,” via anticholinergic toxidrome, did and will turn into “one in a million” medical researchers, in the search for the true etiology of our “psychosis.” And find the medical proof of the iatrogenic etiology of “the sacred symbol of psychiatry.” Thus, apparently, why there’s a need to rename “schizophrenia”?
Confession, repentance, making proper amends to those they’ve harmed, flushing the entire psychiatric DSM “bible,” getting rid of the entire psychiatric profession (they can easily retrain to become primary care doctors), and completely separating the psychological industry from the medical system, is likely the best solution for saving the psychological industry.
But to save the psychological industry, they do need to get out of the child abuse covering up business, and this has apparently been a paternalistic problem with the psychological industry, for over a century.
And this is, at least in part, why we have all found ourselves living in a “pedophile empire.”
And I do know all about those non-clinical psychologists, who may not likely have even known anything about what’s going on in the criminal “clinical” side of their own industry. Who think handing over conservatorship contracts, under the guise of “art manager” contracts, is “the only way.”
I explained that satanic contract to my local police, and that psychologist hopefully ended up with a call warning him to leave me alone. At least I know he was embarrassed when I next saw him. And his wife – who was seemingly sad my family had left her church, since we’d worked together in providing wonderful art and music programs for children together – told him to chill out, and leave me alone, when we ran into one another.
So let’s hope and pray that by shedding light and truth on the systemic, paternalistic industries’ crimes – especially the “unspeakable” crimes, “the dirty little secret of the two original educated professions” – that we may bring about a better world.
If you detected any annoyance in my comment it was in no way intended as such, nor was it personal. I think you raise an interesting debate. It is interesting. But…I feel it is a tangential issue of distracting less urgency than the need to save thousands of people by getting them off the meds. Some think that if you get rid of the diagnosis then that solves the problem. The person wont have a diagnosis to badly treat or badly medicate. But that would be like saying lets scrap the word covid so that no problems occur to anyone in society. Well I am sorry to say people will still die of covid, as the choked river Ganges has shown. Getting rid of a diagnosis does not get rid of an illness. The illness still lives on and debilitates people and needs taken seriously. I know you are not saying the illness does not exist. I admire you. You are both seeing it from all angles and are neutral and generous and clear minded.
Psychiatry as an establishment, not you, is deeply embarrassed by its grave error of meting out bad treatment to people with schizophrenia. It is like how Thalidomide got given a new name.
I would prefer psychiatry to not indulge in feeling embarrassed at all. Embarrassment achieves nothing. It has no place on an Emergency ward. That is where we are at right now. An Emergency. Because millions of people are dying on the medications and getting zero help to come off. THAT is the problem.
I have just babysat a friend who decided by herself to quit Seroquel after being on it for decades. When I learned of her decision I made myself available night and day should she need to derive strength to soldier on with her withdrawal. Month after month I propped her up, calmed her down, cheered her on, reassured her all the nightmare panics would go in good time. All this while her nurse and psychiatrist were pressing antipsychotic pill packs in her hands, at days when she was pretty okay. She got to five months. I did not hear from her for some weeks. I called her last week. She looks suddenly obese. I asked if she was still off the drugs. She saud she got really freaked out one day and tried to get help. All professionals were not answering her calls. They were away at conferences. Maybe to think up a new name for baby. Maybe to “end the stigma”.
Im sorry but I rather fear that NEGLECT is the problem. Not so much stigma. And now more neglect may be comimg because psychiatry cannot bear its abrupt change to being more like Emergency doctors helping people quit. They cannot bear it because they think they have to bow to pressure to make a religious act of confession and penance. But that assumption is lazy. In an Emergency there is no time to contemplate whose conscience fell asleep on the job. It is nothing to do with how psychiatry “feels” anymore, or how it can tinker at the marketing edges, as if schizophrenia if given a new brand name can be presented free from past taint. Really what matters is that psychiatry set up clinics e v e r y w h e r e to help people come off the crap. Then we can all decide what to name baby or what wallpaper makes baby sleep better. At the moment…
BABY IS DYING OF POISON.
My friend faced her nurse and psychiatrist last week and they both gave her a rebuke about even thinking of coming off meds. She was doing fine. Another month and Im sure she would have won through. At a crisis point in her withdrawal she had NOBODY to turn to of a proffessional capacity. They all seemed to be applauding her downfall because it absolved their guilt about what the dickens they are prescribing. There will be plenty more where that one came from. Plenty of withdrawal fails. Plenty of…
“There see…she does need the meds!!!”
Like a crystal meth addict needs their “meds”.
I am not wanting any psychiatrist to feel any stupid embarrassment. It is delaying giving people proper immediate help, if they freely choose it, to quit. All the heroism in psychiatry and psychology seems to be on focussing overly much on “naming baby”.
But, for god’s sake dont listen to me. Make your own free choices. Do what you believe is going to help. I am certain that what you are doing….
REALLY IS HEALING…
and I want you to keep going. Keep marching forwards with your idea of what will make the lives of others feel better. I am sure thousands will bless you for working on this honourable endeavour. I sincerely mean this. I apologize for my wit. I just needed to air my concerns. I hope that is okay with you authors and you do not feel nipped at.
Am I horrible?
Please dont cry. I hate it when people cry. Here….tissues…glass of water…
now I feel like a bad person…nihlistic….call the psychiatrist…
ohwait…you are the…
Anecdotally speaking, the problem with schizophrenia is that there are people who have it and are healthy enough to be even psychologist or psychiatrist themselves! Right?
There are many people with this condition who are living normal lives, so the problem may be that it is not the name or the condition but something else?
Maybe every psychiatrist needs to have at least one person who had this condition but is healthy now for humbling experience.
The problem and the stigma is you have this condition and it is a death sentence and you cannot ever get out of it – if you get healthy and move on with your life, and you share this – you lack insight and you are double binded and told you are truly schizophrenic and not know it.
I do not have solution but as others said maybe differentiating those with positive reactions versus negative reactions may help – so one is evolved spectrum for those functional enough to take care of themselves and the other is regressive spectrum while in the acute symptomology like violence to self or others. And one client can go from one side of spectrum to another or completely get out of the spectrum. The mere fact one person can tell you that you WILL BE THIS WAY FOR THE REST OF YOUR LIFE is seriously flawed especially when many recover with meds or not eventually. We cannot call it a spectrum and yet discount the spectrum.
Back with a snack.
Why people keep zoning in on schizophrenia is because it is the pillar upon which our modern understanding of out and out madness rests. Nobody does it better. As the Bond song goes
Schizophrenia has become the scrap of coastal land that whole continents are fighting over. Every one needs a piece of schizophrenia-land turf upon which to build their new paradigm. People who have quite different debilitating conditions resent the upstart schizophrenia and want it bulldozed so it can be a featureless paen to acceptance. As if by getting rid of the problem of Palestine by demolishing it you accept the difference that was there, or as if acceptance is the very bulldozer, flattening over the peaks and troughs of difference, levelling out the out and out madness so that something else may grow there.
People who help those with schizophrenia are marvellous. I love them. But some who help people with schizophrenia are in need. They want something from schizophrenia. They may want it to go away. Helping schizophrenia to change, or get better, or wear smarter clothes. Others want schizophrenia to be what they have. If their depression is a landscape nobody wants and nobody is fighting over. Some want schizophrenia to be a gold mine where pharmaceutial nuggets can make them filthy rich. Some want schizophrenia to be a cuddly toy, a soft teddy with cute staring button eyes, who can unite with everyone in a peace agreement hug.
What few like is an articulate person with schizophrenia. Vocabulary and madness must not meet up in a clandestine tete a tete over a border wall. Vocabulary is for the workers. If a person can have both schizophrenia and big long words then no one is safe in their beds from coming down with a touch of madness. The person with schizophrenia must be viewed as eternally devoid of speech. Even needing outsiders to come in and rename them.
As I say, I am not at all against people choosing to rename their condition. I just feel a global poll should be conducted that is impartial.
“Are you experiencing stigma from the label schizophrenia?”
“Name ten aspects you like about the term schizophrenia and ten aspects you do not”.
What I mean is really ask the very people who have the term. And maybe avoid conflating it with the quite separate issue of stigma and the other quite separate issue of bad treatment.
It is perfectly possible to be schizophrenic and expect, if not demand, good treatment.
If we wait a hundred years for a hundred different kinds of stigma to be abolished from the planet first before we can sit down and expect “good treatment” then we have abolished the cosmetic at the expense of the needful. Good treatment should come to all those who are stigmatized, not in spite of the fact they are stigmatized, but because good treatment should be given regardless of whether a person is stigmatized or nae. And I dont think they should have to get rid of their distinguishing marks that make them eminently stigmatizable just to have them washed and dressed to receive good treatment.
“Get rid of the “S” word because it stigmatizes you and we all care that you get looked after”.
“Keep the “S” word and we will care for you and love you and give you good treatment, never bad”
It may be that the guilt about not having given good treatment is being dressed up as an oversight to do with how the “S” word threw people off the people caring scent.
Good treatment should happen immediately. It should not take a biblically long time with peace deals and land negotioations.
I say all the above to no one in particular. Certainly I am broadly supportive of the aims of the authors. But using another land metaphor I think established psychiatry is JUST TOO BIG. Really it would be nice if it was broken up from its behmoth unified force and made into islands. An island for people who want trauma focused care. An island for more holistic care. An island for depression. An island for drug withdrawal. An island for old style psychiatry. An island for Soteria style. An island for people who dont want a diagnosis. And island for those who do.
The hotel business is a vast collection of independant island hotels. There are some hotels I would love to be in and some I would not. Everyone has different tastes in creature comforts. And people evolve over time. An island hotel for my teenage years would have been right for me then but not now.
I am.being told by my hallucinations to stop saying anything more. Its stop start stop start. All week I have been getting the voice in my head that says…
I go to remove a shoe
I brush my teeth
I think up how to recycle urine into a new type of electricity.
A Huge flood is coming.
I am a prophet. I see the future. Anyone who can move to higher apartments or levels will be okay. Anyone who can react fast will also be okay. Plan a route. MIA should pack some boxes of archives and put it on a mountain. If it does not then some archives may be lost. The flood is not mega but will cause damage.
I say this knowing that I know not when the huge flood will come but that it will. Maybe ten years from now. Maybe two years. Just prepare. Those who dont will stupidly take out their phones to take selfies of the interesting white line on the horizon. So do a flood drill. I predicted many things before with accuracy. But you dont have to believe me. You can call me mad. I dont care.
Stigma is bestowed not to the crazy but to the crazy who have the audacity to be wise.
It is an attempt to control competing forms of wisdom.
I found this interview disturbing on a number of points.
1) That the one interviewee expressed no concern at all that her patient was abused with ECT to knock him out of his catatonic state. My wife has experienced many of those, and after the first time, when I had to figure out what was going on internally, it never took me more than 30 seconds or so to bring her thru them…certainly nothing barbaric like ECT.
2) That the goal of changing the name is so that people will become more docile to accept their diagnosis and ‘treatment’. Sigh
I’m think Someone Else had some astute observations about various forms of ‘psychosis’. My wife and I never had to deal with any forms Someone Else described except that which is caused by trauma and dissociation, and I simply never saw it as ‘psychosis.’ It was more a ‘time-overlap’ issue (past overlapping with present) because of the dissociation and as we brought back ‘online’ parts of her mind which had been sequestered/dissociated because of the trauma, well those parts were still oriented in the past at the time they got sequestered/dissociated…So to me, it’s by no means ‘psychosis’. When properly understood, it’s just like being Rip Van Winkle and waking up to find everything has changed, and so my part as her healing partner is to walk with her and be her ‘safe haven’ as she slowly acclimates from the past to her new, present-day circumstances and helping those parts to connect with the rest of her so that she’s not at war with herself.
Just a few moments ago, I talked online to a woman who was delusional. She told me the military was spying on her, that there were energy weapons directed towards her, that she has special abilities, that she was chosen by God and that people in stores were playing stasi tactics on her.
When I told her that she’s not alright (and I didn’t say “get help”), she said “Ah, here come the stasi tactics” and that just like her mother I was accusing her of being mentally ill. She told me she knew who I was.
I obviously wasn’t around her and I didn’t know what was happening to her. Whether she was having a manic episode brought on by antidepressants or something non-drug induced was going on or whatever else.
And you know what? I STILL would not send this woman to any person who is a psychiatrist (except under very specific conditions that no person in a professional role will accept) or let her be labelled as a schizophrenic, schizoaffective, bipolar, or whatever else. That’s the last thing this woman needs. A transient phase of suffering being turned into a lifetime of degradation.
In this moment of distress, if she comes to some realisation about her current state of mind, she will take herself to a shrink because she’s desperate and doesn’t know what else to do. If not, her family or the people who are around her will take her. Then the standard procedure follows: Label her with a few life-destroying labels and give her one or two drugs from the standard arsenal of drugs in psychiatry. And whether the drugs work or not, she’s trapped after that.
While it may provide temporary relief, it could be the worst mistake of her life in the long run.
These are the situations that worry me. The situations of extreme distress that drive people into the psychiatric system, because they don’t know what else to do.
The woman on the bus was shouting and yelling at unseen hallucinations. It was a crowded bus and she began attacking strangers verbally. I rather liked her soprano. I felt she was psychotic. Ill. Like someone in a fever. But I too was hallucinating on the same bus. Not badly but enough to make me unable to be the rescuer that night. I kept hoping someone else would take out their phone and do something practical but everyone seemed only interested in getting home. I felt no inclination to see that her journey made an eliptical detour to the psychiatric hospital. I knew they would ram her full of antipsychotics. I did not want that for her. But even though I settled on that thought I realized I had no moral right to be her health decider. I felt irritated at being in that predicament, as well as concerned.
Suddenly it was her stop. Or was it? Where the hell was she going? I watched the blizzard outside the bus doors. She had zero protection against the cold. Her many bursting plastic bags hung around her ankles like the trip wires of scolded, abandoned children. The snow enveloped her curses like a matron receiving her body with white towels. I knew the area she disembarked in was creepy. She was a woman all alone in a white out, and completely out of her mind. She was maybe going to be made warm by a stranger who might add to her bundles, nine months and an adoption agency later.
I was on a bus, hallucinating and feeling awful. Feeling like I needed help. Nobody else on the bus budged or wiped condensation from the window to see where she had gone.
The indifference of the passengers, “the community”, did sweet nothing to help her. The temperature outside must have been minus fifteen.
I ran off the bus to trudge through the snow and find her but I could not see her anywhere.
I won’t say what I did after that. Getting her to a place of safety and warmth and food was probably going to incur psych drugs. And leaving her drug free and wandering her cottony way into hypothermia, with pehaps the nightmare of rape and possible pregnancy was not ideal either. And taking her home to my place after running through snow drifts to find her in the dead of night was not what I wanted to be doing whilst I was myself hallucinating. I began to cry in the snow. Crying is good. It is about all you can do in regard to schizophrenia.
She can withdraw from drugs six months or a year later. She cannot withdraw from a caesarean section and a lifetime of wondering if her baby is crying for her. And she cannot withdraw from being dead in a blizzard.
Yes, some people would prefer the ice to the blister pack and that bargain for a warm bed, but whose choice is that to make if someone is so out of whack they decide to jump in a frozen lake whilst they think its a bouncy inflatable moonlit castle?
A friend gave birth to a lovely newborn boy. Bipolar psychosis hitched a ride on post partum hormone rages. Do you know what she did a week later? She deliberately dropped the newborn from chest height onto the hard road.
Was that just distress? Maybe it is fair to say that most people in just distress should be left to fend for themselves. But it seems to me that in severe illness of a very psychotic sort there is not just distress but actual life threatening behaviour. For the ill and for their dependents. I have an inkling that the friend became pregnant at a time when she was not making much sense of her world. She was maybe like the bus lady.
It is all good and well to end bad treatment and even bulldoze psychiatry but I guarantee that something more than an affable shrug and a pat on the back will be needed by quite a few who cannot tell the difference between a baby and a bad dream.
I know you care passionately and I am with you on your reluctance to make matters worse. It can be more heroic in life to stop meddling in other peoples lives and walk away. So I acknowledge your decency in assessing what felt best. And I am glad you bring up this chasm between traditional psychiatric care and the community that does not seem able to shuffle off a bus.
On other platforms comments that have contrary views or alternative views or conservative views or radical views or avante garde views or strong views may take a while to show up. I do not doubt that it must be very arduous to monitor comments for bad behaviour but largely bad behaviour is obvious. It does not take a rocket scientist to spot it. Most commenters are of good intentions. Most commenters care.
In the early Christian Church a heretic was not someone who safely believed in preposterous bellicose fabrications. They are easy to ridicule. That’s why the outlandish are given a seat on a pew. Instead the heritic is someone who almost, almost, almost sounds identical to the congregation but may have one dissenting valid or worthewhile point to voice. It is a toss up as to which bit of the heritic spells danger, whether it is that they reveal an opinion or whether it is that they seem as friendly as everyone else. In this way, it us the “close”, not the distant, who get shunned most.
We saw this with established psychiatry. The patients who almost, almost, almost seemed like all the other patients but who echoed one interesting or witty or foolhardy opinion were ostracised more that the infantilized shouters and screamers who were obviously preposterous, safely so. It is the “close” who are deemed heretical.
But ironically it has often been the heretical in history who have had a finger on the actual pulse.
Cherish the jeerer.
The MIA guidelines seem to welcome a plethora of excitingly varied views. This seems to be to “discuss” psychiatry and its paradigm successors. I am glad MIA is not specifcally advertizing itself as antipsychiatry, or critical of psychiatry, or abolitionist per se. It is a vehicle for welcoming open discussion. It is difficult to foster an atmosphere of “open” discussion if there are agendas closing down the openness. We see this with established psychiatry. It is great to find this platform not borrowing from psychiatry’s tendency to gag the opinionated, or mockingly close deaf ears to the discerning voices of people with real lived experience of illness. To do so would be to gag the ill. As if the ill have no right to speak. As if the ill do not exist. As if the ill can make no comment with out it being plunked in a petrie dish to see if it grows the telltale worrying bloom of a revolution.
I myself have only one interest when I make my comments. To my way of seeing life it is that…
“The ill have a right to be ill”.
To disagree with that phrase seems to me to be bullying. It is the same bullying that came out of established psychiatry when it declared that…
“The ill have to be badly treated”.
I say this…
“The ill have a right to be ill and be beautifully treated if they feel that is a choice they themselves want to make and is a treatment, whatever treatment, and it may be the choice of no treatment, that they themselves decide upon”.
I have no interest in pushing a personal agenda that is pro psychiatry. I have no interest in pushing a personal agenda that is antipsychiatry. I have no agenda.
Often a heretic has no agenda. Their freedom from agendas makes them observant.
I defend the right to choose.
If someone feels themselves to be ill it is their choice to select any form of treatment, or zero treatment, or holistic treatment, that they want.
It is not for anyone else to be telling other people whether their own private sense of illness is real or not real.
That is bullying.
There are only a few exceptional situations where “looking after” someone who is very ill indeed does need to be considered. Just as you might help a blind person climb out of a river. Or help a very drunk person cross a road. Or prevent an acutely psychotic person from sticking their pet cat in the microwave. Altered states of consciousness IS A THING. It may become a lethal thing if you are sitting on an ice cornice unaware you are gravely ill with lethal hypothermia.
There IS such a thing as diminished responsibility through hypothermia or severe concussion or altzheimers or brain tumours or severe mental impairment through congenital disabilities. There is also a need to sometimes care for the sick at heart, the bereft of soul, the grieving, and yes the acutely psychotic, who might think their childen are supernatural acursed babies who should be drowned in a car and driven into the sea.
ILL people EXIST.
It seems to me that in the hurry to poke holes in established psychiatry, admittedly easy to do, there has been a simplistic tendency to virtually say that psychiatry invented illness so illness does NOT exist, but also that psychistry made millions of people ill with bad treatment, so illness DOES exist, but ONLY the illness that psychiatry caused.
There seems to be a new tendency to vet anyone who just wants to say…
“I am ill for my own reasons and I need help”.
If the ill are not allowed to be ill for their OWN REASONS then I class that as bullying.
It is not so terribly different from the bullying that established psychiatry meted out when it said…
“You can only be ill for documented reasons of other people’s choosing”.
When one extreme paradigm is at loggerheads with another paradigm, as happens all the time, it pushes that other paradigm to become equally narrow and extreme. Why any “side” becomes narrow and extreme is because of a world weary need to rush to victory. Utopia must be seized before anyone else gets there and destroys it. But in that rush there grows intolerance towards voices that are of subtle difference, or nuanced, or balanced, or philosophical complexity. Variability comes over as irritating complexity. Complexity is deemed superfluous baggage, luggage too cumbersome and self indulgent to squeeze in any room for. Complexity is deemed to slow down the caravan trek to victory. Complexity is too costly a consideration in the stampede to utopian communal paradise. But without any consideration of variability or complexity or nuanced voices there is only a slapdash attempt at encouraging BALANCE, and so the paradise being fought over becomes increasingly imbalanced and exclusive and demanding of a simplistic stock narrative. It may even become the extreme it was wanting to remove.
Luckily MIA does not want that. MIA welcomes open discussion from a variety of commenters. No matter how outrageous any commenters may seem to others in their complexity of opinion. MIA must continue to welcome BALANCE even at the cost of victory….
SINCE BALANCE IS VICTORY !!!
Balance is the one thing established psychiatry could not brave. Instead established psychiatry opted for a simple solution each time. An extreme take on illness. It hurriedly pushed for victory, with an ice cube pick.
There is never going to be a simple solution to the thorny problem of what to do with real ill people.
If any new paradigm of care starts sounding too irritated by nuance, or confounded by subtle complexity, or burdened by variability, I will know it does not put BALANCE front and centre of its treatment of the ill.