Tanya Luhrmann is a Watkins University Professor in the Anthropology Department at Stanford. Her work explores how cultural contexts shape the experience of mental distress, particularly voice-hearing and the symptoms associated with psychosis. She also turns the lens on the practice of Western psychiatry itself, investigating how the field represents the mind and how these representations influence our collective understanding of reality.

Luhrmann’s book When God Talks Back was New York Times’ Notable Book of the Year, and she has written numerous articles on psychosis, medical anthropology, and spiritual experiences. Recently, Our Most Troubling Madness: Schizophrenia and Culture was published by the University of California Press. Her newest book, How God Becomes Real: Kindling the Presence of Invisible Others, was published by Princeton in 2020.

Luhrmann describes herself as someone who is interested in different types of “realnesses.” Given that she grew up surrounded by different worldviews, it is not surprising that her work reflects this diversity of interests. It spreads across academic fields and geographical terrain – from anthropology to psychiatry on one side and Chicago to Chennai on the other. Throughout these writings, she has challenged many assertions of mainstream psychiatry, often to the annoyance of leading figures in the field.

In this interview, she talks about the damaging effects of a diagnostic identity and the often-unseen challenges that peer counselors can face. She also takes on big questions: What does it mean when a person with high scores on psychosis scales is functional in one culture but not in another? Are auditory hallucinations shaped by cultural experiences? Are they always a source of distress?

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Your work crosses both disciplinary and geographical boundaries. How is the relationship between psychiatric diagnosis and social identity in the US and different from other places, like India?

Tanya Luhrmann: People I came to know in the United States, mostly in California and Chicago, are often exceptionally aware of the nature of diagnosis and the terms. I gave this young woman a psychosis scale to see if she would meet a schizophrenia diagnosis. I remember she said, “Oh, I meet all these criteria. I’m so used to these questions.” I was really quite struck by that.

I had done work in Ghana in West Africa and Accra, another large city, and then Chennai in South India, an enormous, chaotic city. These were very sophisticated, modern, urban places, but people who appeared to meet the criteria for schizophrenia simply did not use diagnostic categories. They did not seem to think in terms of diagnostic categories. I think this may be an advantage for the folks in Chennai and in Accra and Cape Coast.

I think these diagnostic categories, particularly for psychotic disorders, carry a quality of the diagnosis of death. In our country, they evoke a sense that one is crazy, that the craziness is permanent and involves a broken brain — something central to our understanding of selfhood and identity in the United States. That was just a lot less salient abroad.

Dhar: You have written about how cultures and contexts shape the experience, content, and the consequences of voice-hearing. Could you give us some examples and tell us more about this phenomenon?

Luhrmann: My colleagues and I did a study where we talked in some detail with people who met the criteria for schizophrenia in this country. The first group was outpatients in supported housing, around 20 of them. I did the interviews in the States, and two colleagues did them at the Schizophrenia Research Foundation (SCARF) in Chennai, India — a very well-respected place. They also interviewed 20 people similar in age and length of diagnosis.

Then I interviewed 20 folks in hospitals in Accra; these were younger patients who were more ill. I went into the wards with a Ghanaian research assistant, and I had her go back to do more interviews after I left. I was worried about what people might tell me because I had white skin and I am a foreigner, and so different from them.

We found that the Americans uniformly hated their voices. This is probably not true for everybody, but it was pretty striking for the sample I interviewed — they didn’t know who was speaking. They hadn’t met in the flesh the person whose disembodied voice they heard. There was a lot of violent content, and these violent commands and negative experience really captured their experience. There was this alien, unhuman voice saying terrible things to them, and it was highly distressing.

It was different in Chennai and Accra. I do not want to give the impression that it is just fine to have schizophrenia in these parts of the world — the similarities of the illness were much more striking than the differences. But it was pretty striking that in Chennai, people heard commands which were more everyday ordinary things — “get dressed,” “don’t smoke,” “clean up.”

Dhar: Sounds like a parent…

Luhrmann: Exactly. That is exactly how they were interpreting their voices.

Over half of them heard kin speaking negative voices, but the negative voices were much more sexual. Even Americans heard sexual voices — there was this one guy who would hear a voice say, “give me the booty.” The content of his experience was all about sex.

The experience of these voices is often multisensory — they feel sexual. Americans, when they talked about these sexual experiences, felt that there was some fun in that too — they are complicated, whereas, in Chennai, twice as many people talked about sex. There was some enjoyment, but the voices were much more likely to be shaming. There was a mixture of experience — some physical, some quasi-hallucinated.

For one man, his voice was his mother-in-law, who was going to tell everybody — she was the hallucinated voice. She would say out aloud what he was doing, and he would be humiliated.

Then in Accra and Cape coast, those threads were still there, but I was so struck by this insistence that the voice was good and that the voice was God or the gods. People would say things like, “If I didn’t hear God, I would be dead because God is helping me with this problem that I’m having.” That was different.

Dhar: When I researched people hearing voices in the rural mountains of Northern India, I was struck by how functional they were. Some voices were good, like a woman dancing with a baraat (wedding procession) she visually hallucinated, others not. Often even with bad voices, they took care of their families and worked on farms. Could you tell me if you noticed a difference between how functional people were in the different places you did your research?

Luhrmann: I am running this large team, ‘The Mind and Spirit Project,’ and we are interested in the way people think about their minds and their experience of spirit — cool, weird, anomalous, unusual, and sometimes common experiences in which people interact with invisible beings.

For this project, in Ghana, there’s a group of people we interviewed who are called Okomfu — people who talked to the local gods. There is a cultural model — a common set of ideas that, at some point, the human is called by the Gods, and the human will resist this call. The call is often an auditory experience mixed with dissociative stuff — they are able to dissociate.

So, you are called, and when you resist this call, other people think you are crazy. This will last for a couple of years, and if you accept the call, you go off for training, which is pretty tough and involves listening to the gods identified as good, even though you might be afraid of them, and not listening to the demons.

I was intrigued about whether there might be people considered psychotic who were functionally effective in these roles. I found 18 people, about half of them were these traditional healers and half were Christians. There were people who would make a clinician wonder about psychosis because they described are a lot of auditory and demonic experiences.

When they talked about being called by the gods, they told a story about how distressed other people thought they were. For example, one man said, “my aunt came and told my mother to take me to the psychiatric hospital, but she didn’t want to do that, so she took me for training.” There were other groups of people, like those who loved going into a trance. There were those who said they heard voices, but I am not really sure that that was the experience from the way that they were talking about it.

I am tempted to think that it’s easier for somebody whose body is vulnerable to displaying and expressing the kinds of symptoms that we associate with psychosis to kind of wrap those symptoms in a culturally appropriate model — this causes the severity of the symptoms to abate to some extent.

Dhar: Does this relate to WHO’s findings of many developing nations showing better prognosis rates for psychosis, especially for hearing voices?

Luhrmann: I think so. The data are most robust for India and not just rural India. It is in Chandigarh and Chennai, which is not where you go for rural tranquility. Many times, people have tried to probe those observations that they have found in India. They look at somebody when they first fall ill and go to healing shrines, to hospitals, and do the same in the States, in Denmark, in the UK, and other settings. When you look at those people two years later, they look about 50% better in India. I am pretty persuaded by this data.

I think the caustic nature of the hearing voices experience might play a role. In our culture, for a whole set of reasons, people who are psychotic often end up on the streets. It is hard to know the exact figures, but they suggest that this is a pretty common experience. It is a terrible way to treat psychosis; this happens less in India. It happens, but it happens less.

I think a lot of it is because the person with psychosis in our country learns the word schizophrenia. It’s an identity. It’s who you are. I was really struck in India. One of my colleagues introduced me to one of her patients. If you gave this woman a standard psychiatric evaluation of the severity of her illness, like the PANSS — the positive and negative symptom scale — she would look pretty ill, but she was really functional.

I talked to her and her husband, I talked to her and her father, nobody used a psychiatric diagnosis. Voice hearing was only a problem when it interfered with her life. When she “followed the God out of the house and got lost,” that was a problem. But what really mattered to her husband was that she cared for the kids. She was in charge of the kitchen. There was a servant, but she had a job and a set of expectations as a wife. As long as she more or less fulfilled those expectations, that was okay.

Dhar: In your book Our Most Troubling Madness, you write about the place of families and their responsibilities in caring for someone with mental health issues. At both faith healing sites and hospitals in India, I noticed that families were always present. They would stick around. In the Psychology literature, families are often seen as a source of distress and dysfunction. How do these cultural differences in the role of families in caring for people affect patients?

Luhrmann: In America, because we have the social safety net, and because we have this model of independence because people are expected to value their freedom, kids leave their families by the age of 18. They do not always return. This is one reason why such a high percentage of people who have symptoms that meet the criteria for schizophrenia, I think half of them, end up on the street for some period of time.

In India, I went into villages with people from SCARF, and families would assemble with their ill family member in the hospitals. The families are always present. The families always go to medical appointments with the patient.

Social support is critical to humans. It can also drive some of us crazy. I remember my first encounter with an Orthodox Jewish community; there is such an intense communal life — all of these generations living together, praying together, poking their nose into everybody’s personal business. I know that it can drive ordinary folks crazy, but I think it is, on average, great for the person with psychosis.

For a person with psychosis, the family knows whether they are at risk of unpredictable behavior or violence. They are often taking measures to manage their access to things that could hurt them or others. Then the person with psychosis lives in a much more predictable world.

I spent a bunch of time on streets in Chicago, and this neighborhood with one of the densest per capita population of persons with psychosis, next maybe only to jail in the entire state of Illinois. People would leave the hospital, have a nomadic lifestyle, move between the homeless shelter, supported housing, jail, and then back to the hospital.

I saw that women, in particular, had this freedom, they were able to choose what they would do, and they were raped and beaten. That was really complicated. If you read Foucault, for example, there is a sort of romance in madness, and the madman is truly free, and we want to believe that. But you know, for a woman with psychosis on the streets — her body is so vulnerable. That happens less in India for psychotics. It absolutely happens, but less.

Dhar: Your work was covered by the New York Times, and then it inspired a harsh, and one might say an extreme reaction from the former APA president, Jeffery Lieberman. Why do you think that was the case, and how would you respond to his accusation that no other science will be asked to explain itself to Anthropology?

Luhrmann: I think that is ridiculous. Fields walk into each other’s fields all the time.

I had written this piece where I talked about this manual called ‘Understanding Psychosis’ published by the British Psychological Society. It made these radical claims and said that if you’re somebody who seems to be ill, maybe it matters to you to name this illness, maybe it doesn’t, maybe you want to take medication, maybe you don’t, maybe you want to think about these symptoms religiously, maybe you don’t. That book, you could say, is a pretty anti-psychiatry book. That would be too strong an interpretation, but I think that is the interpretation he placed on it.

It can feel difficult. It’s like saying, “Oh, psychiatrists, don’t know what they’re talking about.” I wasn’t saying that. There is a temptation in this country that when clinicians are taught about hearing voices, they encourage their patients to ignore those experiences because they are irrational. This cultural data and this new movement that is coming out of Europe suggest that for some people, if you treat the voice like a person, then it behaves better.

My own suspicion is that if you put the voice into a social relationship, then the person who is hearing the voice finds that they have to experience that voice as a social relationship.

Dhar: Some of the biggest criticisms of mainstream psychiatry have come from prominent psychiatrists. From Robin Murray on schizophrenia to DSM-IV chair Allen Frances critiquing the diagnostic inflation in DSM-5. Your book Of Two Minds talks about psychiatrists’ training and how they are asked to make really difficult choices. Could you speak more about this training and how these difficulties eventually influence patient care?

Luhrmann: I was looking at psychiatry in the early and mid-nineties, and it was still a battlefield between the psychodynamic approach, where people see conflicting emotions causing symptoms, versus people who think about psychiatric illness is caused by something wrong in the brain that medication will fix.

I was struck that, for many psychiatrists, there is so little time, particularly these days. The pressure came from managed care, where there is a completely understandable concern to reduce the cost of medical care. Psychiatrists, in particular, sometimes have 15 minutes to spend with the patients. Then it becomes a symptom checklist, an examination, the medication, and how the medication is working — so the encounter with a patient becomes a kind of sorting exercise.

I was aware of this diagnostic nosology, a list of categories. Somebody once explained the DSM to me as a combination of the Bible and the telephone directory. The psychiatrists knew that these categories did not capture the experience of their patients, but at the same time, they were schooled in sorting patients — try this medication, that medication. It was just easy for the person to be lost. Even in mainstream medicine, we know that having a doctor who cares about you as a person is helpful to your care.

Dhar: This is what you have called the crisis of managed care that focuses on stabilization. I have heard from people working at psychiatric hospitals that there is a revolving door. You see the same patients over and over, you stabilize them, and lose faith in anything being a real treatment. You write about peer counselors and the challenges they can face. Peer counselors have expertise about a certain condition, like hearing voices, because they have experienced it first-hand and can provide great help to other people. But like you’ve written about John Hood, there can be complications and repercussions with that work. Could you tell us more?

Luhrmann: I was really struck by John. When I met him, he was the mental health person of the year in San Diego — everybody was proud of him. He was funny, bright, articulate, so well put together. He was serving as a peer counselor.

But because of the way that mental illness, and schizophrenia, in particular, are understood in America — something that produces brokenness and is the product of a broken brain — he had this incentive to drop out of the system and adopt the anti-psychiatry model that you should be artistically and rebelliously resisting ‘the man’ or the authority.

Then he became a peer counselor. Suddenly, in his experience, he was ‘the man.’ What really symbolized this for him was that he had keys. He had been hospitalized like umpteen times and hated being behind locked doors. Now he was given the keys to those doors, and it was a source of great pride, but it was also a source of great conflict.

He had also internalized that he was, by definition, not good. There was this quality that when he became a counselor, he was being asked to have a false self that was not his true self. That was really, really, hard for him.

He decided to go off medications, and many people around him wanted to attribute it to the pressure of being a peer counselor. Then he became homeless, and then he disappeared into the anonymous world of the homeless. I think it can be hard because, particularly in this culture, there is so much anger among persons who meet the criteria for schizophrenia in treatment centers in this country. There is a sense of being kicked out of the social world, and then entering back in becomes complicated.

Dhar: My last two questions are: how did you become interested in studying psychosis across cultures? And what is the most interesting and important thing happening in medical anthropology right now?

Luhrmann: I think that medical anthropology is newly aware of the importance of working with clinicians. There was a period of critical medical anthropology where our job was to criticize clinicians. Now there is more of an engagement in medical anthropology where people have a sense that their knowledge really has something to contribute.

Clinicians realize that anthropologists and people who study cultures and historical contexts of these experiences have something to contribute to the understanding of illnesses themselves.

I have always been interested in how things become real to people. I first became interested in religion, and my dad is a psychiatrist. So, I grew up with stories about people in different worlds, in different kinds of realnesses.

I grew up as Shabbos goy. My mother’s father was a Baptist pastor, and my cousins are very conservative Christians. My father’s father was a Christian Scientist. My father went to medical school (that doesn’t usually happen) and became a psychiatrist. So, it was really striking to me when I was young that there were people, these good people who had very different understandings of ultimate reality, and that was something we sort of bracketed. Then there were these other people who had experiences of ultimate reality, who were really very ill.

I lived in that soup thinking about the nature of human connection with the real. That has always driven me.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

25 COMMENTS

  1. “I think these diagnostic categories, particularly for psychotic disorders, carry a quality of the diagnosis of death. In our country, they evoke a sense that one is crazy, that the craziness is permanent and involves a broken brain — something central to our understanding of selfhood and identity in the United States. That was just a lot less salient abroad.”

    But you refer to them as ill.

    • Sam, you are totally right. This is a very interesting interview, but it is clear that Tanya Luhrmann believes that “schizophrenia” is an objectively existing illness. It is also striking that she mentions a man who came off neuroleptics and later “disappeared into the anonymous world of the homeless” – she seems to imply that this is what awaits people diagnosed with “schizophrenia” who stop taking their “meds”…

      She earlier says that an Indian woman she met “would look pretty ill” according to standard psychiatric criteria, but in reality was “really functional”. It is surprising that such observations have not made Prof. Luhrmann much more critical towards psychiatry, its concepts and its methods.

  2. Dr. Luhrmann, I am extremely grateful to you for this writing. This is great. It excites me. I work as the CPS on an ACT Team in South Georgia. I have many service users who I provide full supports to daily who experience auditory (e.g., voices, music). I’ve been hustling to get Hearing Voices Network groups (virtually 1/21) started. I’m doing intensive work with individuals who have diagnostic categories of Paranoid Schizophrenia, Schizoaffective, Bipolar Disorders, Depression. These individuals are all BIPOC and largely male. I have an interesting understanding of voices, or seeing and sensing from a cultural explanation. I work largely with trauma, crisis, peer crisis intervention and terror. More info, please: [email protected], (706) 391-3864 EST

    • I respect that.

      But I am curious, do you think the term ‘service-user’ is pigeonholing, pushing a sense of permanence, and creating an imbalance in the ‘provider-client’ relationship? I use the term but as rarely as possibly, and certainly wouldn’t use with people directly: as in, ‘since you are a service-user of mine or this organization’. I have difficulty with other terms: patient, consumer (probably the worst), sometimes even client. Customer is relevant but never used. Don’t most or all of these terms create a similar issue as the use of labels like ‘schizophrenic’ and ‘psychotic’? Professionals feel in control. People self identify: ‘I am a service-user, I am a consumer, a patient’, INSIDE and OUTSIDE the context. Are your ‘service-users’ only released from such a role when they are ‘recovered’ and completely without need of being a client to a professional? Or are they assumed to be more or less chronic clients? Lastly, do YOU become a service-user when you get a vaccine or go to the dentist? Are you so freely comfortable in the patient role, and does it drop as soon as you leave the office it was used in?

      I know your work is probably very stressful and requires a lot. Words are needed, but not simply for convenience or efficiency or status reinforcement. I don’t ask these to knit pick. I am genuinely interested in what the best terms are and how they affect all parties. ‘Inmates’ and ‘cells’ create a similar problem in prisons.

  3. Similar post to a commenter above, but directed to the author and group:

    I am curious, what are the best labels, if any, for people in the ‘client’ role? Client, service-user, consumer (the worst), patient, customer, person in the sick role….PERSON? Do they pigeonhole, push a sense of permanence, and create an imbalance in the ‘provider-client’ relationship? I use various terms if ‘person’ can’t be used, but as rarely as possibly, and certainly wouldn’t use with people directly: as in, ‘since you are a service-user of mine or this organization’, ‘you are his consumer’, etc. Don’t most or all of these terms create a similar issue as the use of labels like ‘schizophrenic’ and ‘psychotic’? Professionals feel in control. People self-identify: ‘I am a service-user, I am a consumer, a patient’, INSIDE and OUTSIDE the context. Are ‘service-users’ only released from such a role when they are ‘recovered’ and completely without need of being a client to a professional? Are they assumed to be more or less chronic clients? Lastly, do ‘providers’ or ‘clinicians’ become service-users when they get a vaccine or go the dentist? Are they so freely comfortable in the patient role, and does it drop as soon as they leave the office it was used in?

    Words are needed, but not simply for convenience or efficiency or status reinforcement. I don’t ask these to knit pick. I am genuinely interested in what the best terms are and how they affect all parties. ‘Inmates’ and ‘cells’ create a similar problem in prisons.

      • Thx Sam. I know your dead serious. I can relate to that, especially my experiences in hospitals. But really most of my ‘outpatient treatment’ has been a watered-down and extended version of being a guinea pig in the ‘ward’.

        If you went to an emergency room bc you sliced off the tip of your finger, would you submit to a label? Or do you just reject them as much as possible? If you had the full power, what might you prefer? If we use self-care, we don’t say we are both doctor and patient, ‘treating’ ourselves, at least not normally.

    • Evanhaar, thank you for this very interesting comment. I would say that terms like “service-user”, “consumer”, “client” etc. are ugly euphemisms, used in order to avoid the terms “psychiatric patient” or “a person witb mental illness”. As you rightly point out, the terms “service-user”, “consumer” or “client” are never used in the case of patients who don’t have psychiatric diagnoses. And these terms indeed imply a permanent role/identity, without the prospect of a possible recovery.

      • Thx Johanna. You prefer ‘patient’ over ‘client’? Client, to me, tends to relegate it to the formal relationship and doesn’t necessarily extend outside in the larger world so people carry it around with them all the time. It is more neutral or dignified and doesn’t imply ‘sickness’ or as much of a power difference.

        If we use self-care, we don’t say we are both doctor and patient, ‘treating’ ourselves, at least not normally.

        • Evanhaar, let me first make it clear that I have personally refused to be a “patient” or a “client” of the psychiatric system. I also think that it is very toxic to see any of these labels (“patient”, “client”, “service user”, “consumer”) as a part of one’s identity – or even as its central part.

          One of the cruelties of modern psychiatry is that it encourages many people with psychiatric diagnoses to believe that their main or only identity is being a user of the psychiatric system – that this experience defines their whole identity. This is disguised as harmless, but it causes untold damage.

          However, I don’t find the term “patient” problematic when it is used in the same way as in the case of people with physical health problems who seek medical help. As I said earlier, in the psychiatric context “client” (just like “consumer” or “service user”) is merely a euphemism, a way of “politely” avoiding hurtful and deeply stigmatizing words like “mental illness”. “Client” may seem neutral and dignified, but in reality it is used to describe people who supposedly need psychiatric care and treatment until the end of their lives – unlike “normal” people.

          • JB: I apologize. I see that I misread part of your original comment. Not only do you not consider the hurtful and stigmatizing psychiatric patient or person with mental illness proper descriptions, you may consider them worse since you called the others ‘polite’ euphemisms.

            I completely agree with most of your points, many of which are why I brought up the question. I also agree that client can be misused too. I get the impression that you don’t think psychic/mental health problems exist, or even if they did, should have no relationship to professional or ‘medical help’?

            Might I ask: Do you have any non-professional ‘relation’ to the psychiatric system? If so, do you request that these terms not be used in your presence, or do you just remain silent? Short of retiring, what should a psychiatrist or social worker use, given that you easily accept the patient identity/role for physical illness?

            I actually disagree about the ease of patient being used at the dermatologist, family physician, or dentist. I think some of the same problems exist there too, just not AS stigmatized and burdened by the baggage that a more strict mental health approach has. When a person is being treated for cancer for months, ‘patient’ can become chronic and be taken home with a self-identity, with family, etc. Leaving aside the mental side, client or ‘person who has a physical illness’ have benefits over patient. Diabetes II is an example of a physical illness that ordinarily WILL need care/treatment for the rest of their lives, obviously not stigmatized, but people don’t judge your credibility or overall capacity for having it. In this way, they could be a lifetime patient (person with illness or in a sick role), but who when relating directly with the service/professional, is a client. With client, there’s not as much a need for its use, to be seen as, or to identify as a chronic client in that way, even though that’s essentially what it is.

            I’m not trying to suck you into anything, so I understand if I seem to be getting into the weeds. These kind of things do not change or re-stabilize without an active dialogue of relevant parties.

  4. Evanhaar, first of all, I do believe that mental health problems exist. I just don’t believe that mental illnesses/disorders are incurable brain diseases which necessitate life-long pharmacological treatment with all kinds of toxic effects. I am against mainstream psychiatry.

    Let me explain that I was personally diagnosed with “schizophrenia” in 2012, after one serious psychotic episode which was probably a reaction to emotional trauma. I decided to come off neuroleptics, though psychiatrists believed that I should take them until the end of my life. I have never had a “relapse”, but my diagnosis has never been changed.

    I avoided the psychiatric system for almost 7 years. Unfortunately after losing my job I was forced to apply for a disability pension in order to have a regular income. For this reason I have to see a psychiatrist once a year. My psychiatrist (he is the one who diagnosed me with “schizophrenia” in 2012) was very impatient and rude during the latest appointment: he clearly does not like the fact that I come to see him only once a year. He actually doubled the dose of the prescribed neuroleptic without giving any explanation (fortunately I have no intention of taking the neuroleptic!).

    I have to explain that I live in Poland where psychiatrists – especially public sector ones – don’t have to be polite towards patients. I was not even able to ask this doctor to stop interrupting me, to stop being rude, to stop treating me like a nuisance. I felt that he was so unpleasant because he sees me as a “non-compliant”, rebellious patient, but also because I am a woman. I don’t want to ever see him again – I prefer to pay a private sector psychiatrist next year, though I am poor.

    As I said earlier, I don’t have problems with the term “patient”, but I am firmly against the approach of mainstream psychiatry towards “people/patients/clients with mental illness”. If I obeyed psychiatrists, maybe I would be now seriously physically disabled because of tardive dyskinesia or even dead, though I am only 40. And I would feel like a zombie. People diagnosed with “schizophrenia” die about 20 years earlier on average – largely because of the effects of neuroleptics and because of the stress and poverty caused by stigmatization (sadly many of them also smoke…).

      • Sam, he is definitely not safe to go to. I am going to choose a psychiatrist from the private sector next year. I don’t think that moving to another part of my country would change my situation – if I could, I would move to the UK where people with psychiatric diagnoses are treated much better than in Poland.

        Here I have to fight even to get my (small) partial disability pension renewed – the system here is very callous. Fortunately I can count on my mum’s financial help (though she is not rich), so I consider myself very lucky. But I am sure that there are some Polish people who are in dire poverty and very distressed after being refused a disability pension despite a diagnosis of “schizophrenia”…

    • Joanna, thank you much for sharing. Based off what you said, we have a lot in common, but I won’t assume we are the same by any means.

      I like how you used ‘mainstream psychiatry’. It is interesting that you live in Poland, although I am very uninformed about its history and state of play. I do hope you get your private psychiatrist as soon as you reasonably can. If you are like me, not only seeing the ‘same doctor that diagnosed you’, but even just other doctors who are very similar to the previous ones, is like having to still deal with an abusive parent. The memories and emotional triggers, the attitudes, the putting their drugs in you, the dismissal, the rushed appointments, the lack of help if not consistent harm (even if that comes through the rollercoaster of constant ‘trial and error’). I had one last year who chalked it all up to my the ‘paranoia’ of my paranoid schizophrenia, if she even ever knew what I was referring to in the first place.

      Unfortunately (the epitome), is that all in all, it was, in fact, too much. I was saying I would rather ‘say my goodbyes and tell myself I love you, and quickly pass away’, then deal with conventional/mainstream psychiatry any longer. My new psychiatrist and psychologist, on top of my other modes, came ‘out of the blue’, and I don’t have to think like that any more, for now. I’ve been able to decrease my neuroleptic dose by 75-85%, the only one I’ve been more ‘ok’ with, normally dosed twice a day, but I take it only before bed. I can’t sleep without it, but it reduces daytime adverse effects, once I finally get up. I’m just at my 5 year mark for getting off tobacco. What you say about people who live with/labelled with schizophrenia is tragic. This is why I told a provider/prescriber the other day on facebook: business-as-usual or ‘it is what it is’ is NOT acceptable. People with/labelled schizophrenia have one of the highest suicide rates of any demographic (or die earlier like you said). They were describing it all in the usual ways. I told them what might help more.

      I’ve lived with the diagnosis schizophrenia for 10-15 years depending on how you slice it. I am on social security disability income. I’ve dealt with everything you’ve mentioned here, except for I haven’t been able to escape the neuroleptics as easily. I was off and on them for years (always gaining and losing over 35lbs, tired/slow, etc.). I find most of my psychiatrists/prescribers except for 1 roughly as you describe (1 out of 12), a couple a little more amenable until I inspected closer. Obeying, non-compliant, rebellious, nuisance: these are all like Pee-Wee’s Play House in psychiatry, the ‘secret word of the day’, although the exact opposite of fun and surprise.

      What you describe, and what I have experienced, happen every single day all over the world, as you know. In the main, what exactly has changed over the last decades? Until this year, when I was able to solve my suicidal brutality, I say ‘what the ‘doctors’ did from the beginning (2003) to the end (2019) was exactly the same D&%N thing: firstly neuroleptics, antidepressants, benzos (often if they didn’t think you used illegal drugs). Most of these were placebo if not trivial, mediocre and insufficient, and/or harmful (minor to major). No deep conversation, no imagination. They have such expensive clothes and long vacations for how incompetent they are.

      http://www.evanhaarbauer.com
      In the orthomolecular section, I talk a lot about my experiences with ‘schizophrenia’, etc.

  5. Evan, thank you so much for sharing your own experiences with such openness – I really appreciate it. Good to hear that you now feel better than before, that you have been able to largely decrease your neuroleptic dose and that you have also been able to get off tobacco! Thanks a lot for the link to your website.

    Of course I am not really surprised by the depressing similarities between American and Polish psychiatrists – and I like the fact that you compare psychiatrists to abusive parents. However, I must say that I have never expected this psychiatrist to be as impatient and rude as during my latest appointment with him! This was simply unbelievable, and I strongly feel that I was treated in this way because I angered him by my “disobedience”.

    Yes, it is tragic and heartbreaking that people diagnosed with “schizophrenia” die on average 20 years earlier and society does not see it as a serious problem (of course many people are unaware of it). Shockingly, a powerful Polish psychiatrist actually claims that these deaths are caused by the impact of the illness on the central nervous system, though it is blatantly untrue: no one has ever died from “schizophrenia”!

    As you can see, I don’t embrace the term “schizophrenia”. First of all, this diagnosis is often very arbitrary. I was diagnosed with “schizophrenia” after only one psychotic episode 8 years ago and my diagnosis has never been changed, though it is obvious for me and people who know me that I don’t have any “symptoms”. There are also many people diagnosed with “schizophrenia” who are using or used street drugs or who suffer from alcoholism – their “symptoms” may be largely caused by substance abuse.

    There is no scientific proof that an illness called “schizophrenia” truly exists. Of course there is no denying that people can suffer from hallucinations and delusions, but it does not prove that they suffer from a life-long illness. The concept of “schizophrenia” has been criticized by many authors, among others Mary Boyle (in her book “Schizophrenia: A Scientific Delusion?”), Richard Bentall (he said: “the concept of schizophrenia is scientifically meaningless. It groups together a whole range of different problems under one label – the assumption is that all of these people with all of these different problems have the same brain disease”; he criticizes this label in a book he edited, “Reconstructing Schizophrenia”) and Suman Fernando (you will find one of the articles co-authored by Fernando here: https://www.academia.edu/8655752/Questionain_schizophrenia_as_a_diagnostic_label).

    On your website you mention, among others, “disordered thinking” as a symptom of schizophrenia. Of course this is what mainstream psychiatrists say about schizophrenia. But “disordered thinking” is a very vague term; and I am wondering what actually makes you feel that you suffer from “disordered thinking” because you sound perfectly logical and coherent! Of course there are people labelled with “schizophrenia” who talk/write in a way which seems incoherent and which may even be impossible to understand, but this may actually be an effect of the damage caused by neuroleptics.

    Regarding the so-called negative symptoms of schizophrenia – social withdrawal, apathy, lack of motivation etc. – nothing proves that they are caused by an illness. Neuroleptics can cause apathy and constant tiredness, and when I was on neuroleptics myself, even a simple conversation was exhausting to me because I felt a terrifying emptiness in my brain (and I am normally a talkative person!). Even a very short walk was tiring. And I was even unable to read a long paragraph in a book, though I have always loved books.

    And there is nothing surprising about the fact that people labelled with a deeply stigmatizing diagnosis, people who are often socially isolated and poor, who have often been rejected by their former friends and who may feel utterly hopeless tend to feel apathy, to be socially withdrawn and lack motivation!

    When people come to believe that they really have a life-long, incurable illness called schizophrenia, of course it frightens or even terrifies them and often makes them feel hopeless. In my case, I was so devastated by the effects of neuroleptics that I soon tried to find out if I really had to take them – if there was really no hope for me. I also very strongly felt that I was not mentally ill – that I had recovered from the psychotic episode. This helped me come off my neuroleptic (obviously psychiatrists were against it) and it has been one of the best decisions in my life.

    I now think that I would have come off neuroleptics even if I had believed at that time that I had schizophrenia. In fact, I realize that some of the more open-minded psychiatrists might believe that my diagnosis was correct, but that I have been very lucky and that I am simply a “highly-functioning” patient. I would have no problem with it, as long as they don’t assume that I should take neuroleptics! In fact, I do sometimes have auditory hallucinations when I am very stressed, but very rarely – and I have not had them at all for almost 2 years. I also have to be careful with strong alcoholic drinks – I have once found out that in my case they cause experiences somewhat similar to auditory hallucinations (the feeling that I have no control over my own thoughts – that they are somehow entering my mind from the outside).

    Finally, let me say what has helped me stay in good mental health since 2012 despite various painful experiences: I get as much sleep as I need; I eat healthily (with plenty of vegetables); I am doing things I love doing; I try to avoid any situations and people I find toxic; I avoid comparing myself to “typical” people; I go on long walks in parks, even in winter; I listen to soothing music; I don’t feel bad because of having very few friends (and none where I live) – the friends I have are real friends; I often talk/write to my closest family members (I live alone); I am also quite active in online feminist groups etc.

    I wish you all the best from all my heart!
    Joanna

    • Joanna, great feedback. If you do respond again, I might prefer you use the email on my website. However, whether brief or long, here is fine, it’s just a bit detailed and personal. No response is fine with me, too. I find everything you say to be very interesting and relatable, and I could go on and on. I wish that I could hear more. I will look at your author references. On a side note, do you know the Polish sculptor/artist Szulkalski? I’m sure you do. Has a bit of a controversial past, but overall truly amazing. Here’s a Netflix documentary link:
      https://www.youtube.com/watch?v=sPkoW4cmqT8

      It is interesting that you’ve had once a year appointments. That suggests to me that you don’t take ANY prescriptions. I’m finding that unlike when I was constantly SEEKING, SEEKING, I saw psychiatrists far more than I wanted, or technically needed, as they were a dead-end in many ways. Now I’m finding that I will probably postpone my next appointment bc I am coasting and don’t require the standard monthly check-up, which was already longer than my previous prescribers’ appointments. I couldn’t go into the void, and even though I knew the routine of the mainstream, I felt desperate enough to repeat the same thing again and again. I feared I would have to go into the hospital, and not only did I know they wouldn’t help me, they would have hurt me. You seem to do your once-a-year thing for a technicality to receive your pension, rather than any need whatsoever. I find that it often is easy to trigger doctors’ emotions, even though I might be emotional at various levels. And that sometimes, what should become a debate and negotiation, with time and references, easily either becomes an argument or a stunted/ended conversation. Especially with hospital doctor’s, who barely plug you in and very quickly move on. I really like my psychologist, and that is a separate issue.

      I find the confluence of childhood sensitivity/depression/anxiety/trauma/family-conflict, use/overuse of legal and illegal ‘substances’ including psychedelics, spiritual seeking and FINDING, getting A/B honor role at two honors schools, confrontation with mental ‘healthcare’ and its assumptions and attitudes, outcomes of forced or accepted pharmaceuticals and involuntary commitment, the big questions of life, and then the context of being labeled with schizophrenia….to be some of the most complicated and difficult things it is possible to imagine. So on my website, I try to do many things. I try to thread the needle, contain contradictory and complementary viewpoints, compare and contrast, and highlight benefits and risks while showing what I favor. One reason I built my website homepage as it is, is to hold 2 or 4 sides very close together.

      I do find it interesting that you don’t embrace ‘schizophrenia’, but you do seem to embrace ‘psychosis/psychotic’, and that there can be drug-induced outcomes, for one. I didn’t accept ANY definitions of schizophrenia that convention gave to me…and prior I had years of studying schizophrenia mainly in the context of psychedelics, shamanism, madness in artists/writers, etc. Then I happened upon Abram Hoffer’s work and literature. I found it so provocative and mostly unusual, that while simultaneously trying his nutritional techniques, I gradually gained a great deal. Part of his notion was that, as you hinted at but don’t really accept as the norm, ‘schizophrenia’ could be considered a ‘syndrome’ with multiple causes, although he favored his ‘chronic pellagra’ hypothesis as a majority of cases. The final clinical outcome was the hypothesized aminochrome pathway, especially the oxidized by-products of adrenaline (epinephrine). It is him that I took the definition of a ‘disorder of perception and thinking’, but I immediately try to cushion it with possible doubt and recognition of the social construction/labeling theory. It is notable that Hoffer also wanted to discard the label ‘schizophrenia’, but on the other hand wanted to use the term ‘chronic pellagra’ in the majority, along with the other causative factors (substance-induced, metal toxicity, cerebral allergy, etc). Oddly, I can’t think of him mentioning trauma/abuse as triggering the ‘psychotic spectrum’, although we know that this can lead to this type of thing. This notion (of chronic pellagra) would offend the deconstructionists and anti-psychiatry folks as much as conventional theorists. A couple remarks: I am critical of many of his attitudes toward this, some internal contradictions in his own history (such as his work on psychedelics, psychotomimetic vs. psychedelic, yet his consistent use of voices/visions as symptoms to both diagnose and to be removed to ‘recover’), and I try to always make this clear in my website. Hoffer thought all ‘psychoanalysis’ was Freud, and didn’t seem to be familiar with Carl Jung’s work. I also try my best to emphasize that very little of the subject is proved as is wished, that standard treatment can lead to the very symptoms that are associated with it, etc. I define positive/negative and hot/cool symptoms partly to paint the orthodox picture of what is being dealt with, but I try to go beyond it, contextualize it, reject it, and relativise it, all at once. This is what I do in my ‘Red Book’ website section on Carl Jung. Of course, I probably have further work to do and may not have succeeded. I’m running a fine line, and I do say at points that, unlike many of the subjects on my site, I will not link standard websites dealing with schizophrenia and psychosis (or pharmaceuticals) bc of the vast misunderstanding and deception as it is usually seen. The exception is links to PubMed, so that some insight can be gained into what standard and nonstandard research avenues have/are taking place. If some day, I feel the need to remove something or change it, I will. This has already occurred over and over again. The Virus Epoch has allowed me to fine-tune my site, which makes the previous forms seem unfortunate in ways.

      One detail I want to mention, is that by taking large and regular doses of vitamin B3, a certain outcome came that I’ve only ever heard mentioned and possibly explained in the Hoffer literature on schizophrenia. It is the collection of freckle-like pigments in certain parts of the skin that eventually can be rubbed off. It is ‘part of the healing process’, is said to happen mostly with schizophrenia (although more rare), but can happen with other people too (but far more rarely). This happened to me. Even if this pigment is not specific to schizophrenia, researchers/scientists still need to notice it and explain it. It seems to be apparent with the B3 therapy. A less clear picture is the occasional mention of a ‘schizophrenic smell’. I believe I had this, and that it went away as I got healthier. Having said all this above, I make no claims at absolute certainty or wish to force onto anyone any of this. Life is a mystery, and will never be fully understood, but these are some areas that are part of my puzzle. It’s possible that my long term heavy cigarette use increased adrenaline and its by-products.

      My website is my work, and it has always required immense editing/revising/rethinking. So my writing is not entirely a representation of the history of my thinking. My thinking has taken on many forms in my life, sometimes its different-ness, sometimes excelling, and then during my suicidal despair, as morbid, compromised, etc. In high school and college, I was a great writer if I cared about the subject (with editing/revising), but my speech in seminars and public speaking was often profoundly difficult. I recognize that much of this is not to be pathologized and labeled, and can be seen as unique to my individuality, and something to be given space and understanding. There have been certain aspects, not just the suicidal period, that were ‘not right’ or ‘not as right as it should be’. Here I don’t wish to overlay my experience as generalizable to others, or people with ‘schizophrenia’, just to emphasize that the thinking/speech function can be cursed or uncomfortable, minor to major.

      I absolutely agree with you, and so would Hoffer and Jung, that both symptoms and outcomes of ‘patients’, can be aggravated or caused, directly and indirectly from treatment and medical environment.

      I generally agree with you about negative symptoms. But I dealt with fatigue, certain difficulty with reading, some difficulty with quality/quantity of relationships, depression, sudden need to leave classrooms, and so on, before ever being on pharmaceuticals. I suppose I should point out that I used cannabis and tobacco. I am aware of and support the nuanced perspective on these things….difficulty with reading due to TOO MUCH READING AND WRITING/information overload, fatigue due to lungs full of tar, paucity of speaking due to being super-reflective and a need to choose words carefully, and because I was still learning and had many Big Questions. But your description of stigma, rejection/misunderstanding, isolation, and being poor couldn’t have been said better. I decided to stop Prozac when, after normally taking it before sleep, I took it after dinner, and I could then not even read. I thought ‘this can’t be good’, so I can relate to your point on this in a thousand ways. My use of micro-dosing ketamine this year profoundly changed my thinking quality and quantity, and I once again began, and still do, read A LOT.

      On your comments on coming off neuroleptics, high-functioning, and occasional hallucinations. Very insightful of you. I wonder, if I had been treated with dignity, given nutrient supplements, perhaps allowed micro/macro dosing of psychedelics, and allowed a psycho-spiritual transformation, would I not have fallen into the levels of despair and sickness I did. The voice-hearing thing is very personal to me, and I’m aware that it runs the spectrum from suicidal command voices to divine revelations, from people who want nothing to do with them, people who learn to live with them, or kind of like my case — who once experiencing the ‘inner voice’ and dreams, though ambiguous, do not need to experience them again, generally speaking. I know how difficult yet meaningful it can be, and I still pay attention to my dreams. That was part of my spiritual experience, the very experience that mainstream psychiatry and normal society try to prevent by any means. The experience that I was never willing to let them take away from me, although they succeeded for a long time. It is my opinion that if you hear a voice, any voice, and especially if you simultaneously use cannabis or psychedelics, that you will be isolated, drugged, labeled, and put through the meat grinder. It might not be as permanent a label such as after your ‘psychotic break’, but may be like mine, ‘psychosis not otherwise specified’, only long after becoming ‘I think you may have schizophrenia, what do you think about that?’, or ‘we’ll use ‘schizophrenia’, that will help with the disability pension application’. !!!!!

      I find your ending comment on what has helped you stay healthy to be not only great advice for everybody, but EXTREMELY resonant with me. Aside from the feminist group. I support feminism FULLY, but I haven’t felt a need to join an activist group for it.

      Thank you for participating. And check out that Polish sculptor/artist if you haven’t already!

  6. Evan, thanks a lot for your reply and for telling me more about your experiences, views and research. I am soon going to respond at more length and will use your e-mail address, as you suggest.

    Yes, I know that psychosis is something real. I can say it because I knew what was going on with me when I had a psychotic episode. I was “hearing voices” and had paranoid delusions for many weeks; I often “heard voices” all night, without being able to sleep! The “voices” and delusions were often terrifying.

    I think that some people claim that there is no such thing as psychosis either because they have never really experienced a psychosis (with very distressing hallucinations and/or delusions), or because in their case the tendency to delusional thinking is chronic and they are not even aware that they are often not thinking in a rational way. As an example, there are people who claim that they have the resist someone’s advances, though the person is not really making any advances!

    I can also add that it is definitely not true that “psychosis is always caused by psychiatric drugs”. I have never taken any psychiatric drugs or even seen a psychiatrist before my psychotic episode!

    For now, let me just address three other important points: first of all, don’t you think that taking large doses of vitamin B3 may be actually dangerous? I know that this is what Hoffer recommends for “schizophrenia”, but it does not mean that it is safe.

    I know that you like Hoffer’s approach, but he clearly thinks that “schizophrenia” is caused by biological factors. As you said, he does not even take into account e.g. the role of trauma. He thinks that the deficiency of vitamin B3 causes many cases of “schizophrenia”, but how does he know it? Isn’t it only a hypothesis? And let’s not forget that “schizophrenia” is in reality merely a diagnostic construct.

    You mention your use/overuse of cannabis and psychedelics in the past. I am sure that these substances have largely contributed to your symptoms. People who are prone to psychosis have to be really careful and unfortunately can’t see cannabis as harmless. I even think that if you had never used these substances, you would have probably never been diagnosed with “schizophrenia”. Many people diagnosed with “schizophrenia” are or were earlier using drugs, including cannabis.

    As I told you, I have noticed myself that drinking a strong alcoholic drink (it was actually Cointreau – I did not realize how strong it was and drank too much of it!) caused a weird experience which was similar to psychotic symptoms. It is not surprising because alcohol causes a rush of dopamine. So I am never saying that there is no link between the biology of our brains and psychosis, but mainstream psychiatry minimizes the role of psychological and social factors.

    On a final note, yes, I am definitely going to check out Di Caprio’s docu about Szukalski – I have heard about this very eccentric artist, but have not yet had a chance to see the docu 🙂

    Joanna

  7. Evan, let me also explain what I meant by my difficulties with reading and conversations on neuroleptics. I did not find it difficult to find the right words. As I said earlier, there was a horrible feeling of emptiness in my head, as if I had literally nothing to say. I felt as if all my imagination and creativity had been killed. I have never experienced this feeling when I was not on neuroleptics – and I became my old self again as soon as I started coming off my neuroleptic.

    Regarding my difficulties with reading, again it was something very different from what you describe in your case. On neuroleptics I found it difficult to focus on the text I was reading. Interestingly, reading aloud was helpful. And whenever I saw a long paragraph, I simply felt unable to read it. Again, it was caused by neuroleptics and disappeared when I decided to come off them.

    There was also one neuroleptic at hospital – perphenazine (Trilafon) – which actually made me completely unable to read. I just could not read the letters on a page, as if something had happened to my eyesight! So the effects I am describing were 100% caused by neuroleptics and very depressing.

    I strongly feel that you find symptoms of “schizophrenia” in yourself because you believe that you suffer from this illness. But e.g. the fact that your thinking sometimes seems “not as right as it should be” to you or your difficulties with speaking in public, or even the need to leave the classroom in the past, are NOT symptoms of a mental illness.

    The idea that there is a “schizophrenic smell” is astonishing and I see that Hoffer described it in an article simply as a “powerful” body odor. There is absolutely no scientific proof that there is a “schizophrenic” body odour. You know, people may actually have delusions about their own body odor! And some patients in mental hospitals have a body odor simply because they don’t wash. I remember a young man at the hospital who had an unpleasant body odor – he smelt like someone who had not washed for a long time.

    As long as you believe that there is really an illness called “schizophrenia”, that you have it and that Dr Hoffer is an expert on it, you will be convinced that you have or had all kinds of symptoms of this disease, including the “schizophrenic smell”. But you may be actually pathologizing completely normal things. You may try this thought experiment: ask yourself if what you see as your “symptoms” could be explained in a different way. As an example, you sometimes left the classroom simply because you were bored or anxious?

    And the freckle-like pigments you have noticed may be actually caused by large doses of vitamin B3. I encourage you, once again, to be careful because large doses of this vitamin may even cause liver damage and problems with eyesight.

    Finally, please remember one thing regarding Dr Hoffer: he was not someone labelled with “schizophrenia”. He was a psychiatrist. He claimed that schizophrenia was a real illness, not a diagnostic construct. There is no reason to trust Hoffer more than any other psychiatrist 😉

    I generally agree with you about negative symptoms. But I dealt with fatigue, certain difficulty with reading, some difficulty with quality/quantity of relationships, depression, sudden need to leave classrooms, and so on, before ever being on pharmaceuticals. I suppose I should point out that I used cannabis and tobacco. I am aware of and support the nuanced perspective on these things….difficulty with reading due to TOO MUCH READING AND WRITING/information overload, fatigue due to lungs full of tar, paucity of speaking due to being super-reflective and a need to choose words carefully, and because I was still learning and had many Big Questions. But your description of stigma, rejection/misunderstanding, isolation, and being poor couldn’t have been said better. I decided to stop Prozac when, after normally taking it before sleep, I took it after dinner, and I could then not even read. I thought ‘this can’t be good’, so I can relate to your point on this in a thousand ways. My use of micro-dosing ketamine this year profoundly changed my thinking quality and quantity, and I once again began, and still do, read A LOT.

    • Hi Joanna,

      I see that your second recent response was made before (but posted after) my brief response saying I looked forward to your email. Should I still expect an email? I would really prefer that. I would like to fully respond and engage there, as you have given me a great deal to consider. Rather than make certain points here, I will await your email. Thank you.

      • Hi Evan, yes, I am going to send you an e-mail. I just wanted to quickly comment on some of the issues you have addressed. Oh, I have only now noticed that I had inadvertently copied a paragraph from your earlier comment in my own comment – sorry for that! You will hear from me soon 🙂

  8. Hi… I have the solution to this riddle of why different cultures hear different voices. It’s because of hi tech weaponry. There is a signal being broadcast worldwide . It rides on noise, it is superheterodyned. Learn more at Lookoutfa Charlie YouTube channel. He also has a blog zero echo nine. Thank you. This is huge.

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