Sunday, October 17, 2021

Comments by Joanna Badura

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  • A really fascinating and illuminating interview! Dr. Hansen has co-authored a very interesting article which shows that psychiatric diagnoses have become a survival strategy for many poor people because of the changes in the US welfare system introduced by the 1996 Personal Responsibility and Work Opportunity Act: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920192/ One can observe the same phenomenon in many other countries.

  • Ruby, I can relate so much to your experience. Thank you for describing everything in such a beautiful, touching and thought-provoking way! (I was not at all surprised when I read that you are now in a creative writing program). And you are so right about evil: evil can so often mask as good. I guess that most psychiatrists are genuinely convinced that they are helping their patients, that the patients have biologically-based diseases and that patients who are “uncompliant” simply don’t know what is good for them.

    I was put on Abilify in 2012, after a psychotic episode. I have experienced the emotional blunting you mention, as well as many other side effects, and I felt that my life had become sad and almost meaningless. I sometimes even felt suicidal, though it had never happened to me before. I often felt that my life, my real life, had ended, and that I was no longer myself.

    Psychiatrists did not even want to reduce my dose – I was getting the standard one, though I am less than 5’2 tall. But just like you I felt that I did not want to “accept the terrible fate others had already accepted for me” – to spend years and maybe even the rest of my life without feeling truly alive, without even being able to have real conversations with my family members (Abilify caused a horrifying emptiness in my mind, as if I had literally nothing to say to others).

    Fortunately I was able to come off Abilify after spending more than a month on it. I have never told psychiatrists about it and simply stopped registering for psychiatric appointments. I have never had another psychosis. After losing my job in 2018 and a period of unemployment I felt forced to get involved again with the psychiatric system in order to be able to apply for a disability pension.

    I feel uneasy because of this involvement with the system, but I feel that I have no other choice. I am not taking the prescribed neuroleptics, but I can’t be open about it. Anyway, I was receiving the disability pension only for a year and I have now been fighting for many months to get it again (my case is now in a court). But even though I am poor and forced to rely on my mum’s financial help and on my various small freelance jobs, I am very happy and I feel free.

  • I do think that it may be like Stockholm Syndrome in many cases. However, I also think that there are people who decide to become “peer supporters” etc. because they don’t have any better job opportunities. For many people (e.g. those who are open about their psychiatric diagnosis) this may even be the only job opportunity.

    In my country (Poland) these posts seem to be coveted and there are very few of them. People with lived experience can’t simply apply for one of these posts: from what I have read, psychiatrists may offer this job opportunity to some patients – well, of course they are not going to choose rebellious patients.

    In my own case, I am painfully aware that this would currently be the only chance of getting a steady job which would not be very stressful and exhausting (job opportunities for women are very limited in my country). It would be much easier to work as a peer supporter than e.g. as an overworked carer in a care home. But of course I would never want to work for the psychiatric system, obey psychiatrists, ask people if they are taking their “meds” etc. Anyway, as a rebellious patient I have never even been offered such an opportunity!

  • Well, I had very mixed feelings while reading this account. I had a psychotic episode in 2012 and spent more than a month on a locked ward, at a public hospital. I was not even able to go outside for more than a month. It was obvious to me that most of the people on my ward were poor. Many patients were stealing from others and even very basic things like sanitary pads were stolen from me: this shows how desperate many of the patients were at my hospital.

    Most psychiatric survivors in my country are poor. They are happy if they are getting a small disability pension. I am very educated, with a PhD like the author of this account, but I am now poor myself.

    The author claims that she “deserves” expensive cosmetics and keeps mentioning them with relish in her account. Does she actually think that there are women who don’t “deserve” expensive cosmetics and other expensive stuff? Oh, I can understand that it can be upsetting to lose an expensive serum or face mask if one is used to such luxuries, but there are so many people – including psychiatric survivors – who lack basic things. The author also mentions the walks she was able to take, the wine she was able to drink at the hospital etc.

    I feel that the author does not even realize what it means to be on a locked ward at a public hospital and how traumatizing these stays can be for many people who are treated literally like prisoners and forcibly drugged (and sometimes even put in restraints). I feel that the author is completely and shockingly unaware of her own privileged situation. She assumes that she simply “deserves” everything she has because she feels that she has been working hard – but there are so many people on this earth who work very hard for very little money and can’t satisfy even their basic needs.

    Do all these people “deserve” to be poor and oppressed all their life? Do most human beings and most psychiatric survivors in this world “deserve” to live in poverty? And people locked in psychiatric hospitals experience much worse things than what the author has described.

  • kindredspirit, what you say is quite interesting. I have actually sometimes thought that some mild hearing loss might have contributed to my episode of “voice hearing” in 2012.

    I may be indeed speaking a bit louder than many other people, and undiagnosed mild hearing loss may be one of the explanations. Interestingly, however, the situations where people claimed that I was “speaking too loud” or even asked me to lower my voice have been infrequent – and these people usually had power over me.

    This was actually the most frequent during my stay at the psychiatric hospital and was humiliating – I was fully aware that some of the staff told me to lower my voice and expected me to obey because I was a psychiatric patient on a locked ward.

    The first time I have ever been asked to lower my voice was when I was a schoolgirl, and the person who asked me to lower my voice was a male teacher. I don’t really think that I had hearing loss already at that time, and it is striking that no female teacher ever told me that I should speak less loudly.

    I actually think that in some cultures many people are not used to women who speak in a confident way. Interestingly, outside my own country I have been rebuked for “speaking too loud” only by two much older white women from the UK.

    My parents have never expected me to be a “sweet”, quiet, self-effacing girl, and I guess that this is why my way of speaking irritates some people. And many people with power – like the psychiatric staff or the male teacher – simply enjoy using their power to make others feel small.

  • [email protected], thank you for your reply, I really appreciate it. I guess that there are many people who indeed assume that only people who are dangerous to others can be involuntarily committed.

    I find this belief particularly hurtful. Of course there are people who behave in a very inappropriate and even aggressive way on locked wards, but other involuntarily committed people also suffer because of their behaviour. In my own case I did not become violent even when some other patients behaved in an aggressive and abusive way towards me, so the idea that people who have experienced psychosis are dangerous always makes me very sad.

    As long as many people believe that psychosis makes people aggressive and violent, it will be very difficult to fight e.g. against forcible drugging.

    In my country (Poland), there are psych wards which aren’t locked. I wished I had been admitted to one of these wards when I was psychotic, but unfortunately I did not have a choice in the matter.

  • [email protected], I agree with almost everything you are saying. However, you seem to be implying that people who are involuntarily committed are dangerous and “presenting with aggression toward others”. I want to make it very clear that people may be involuntarily committed simply because they are psychotic and deemed as a risk to themselves. This has happened to me – I have never been aggressive towards anyone.

    I actually asked a nurse why they wanted to put me on a locked ward if I am not aggressive, and he replied: “Oh, as an example you are speaking too loud.” Let me explain that I was not even angry – some people simply claim for some reason that I am speaking too loud. And I don’t think that this nurse really thought that I was being “aggressive” – he and others simply thought that a severely psychotic person should be on a locked ward.

  • I do agree with you that even toxic people can provide some social/emotional/financial etc. support. People are complex and even toxic people can do good things (sometimes unintentionally).

    If someone is able not to tell others that they have come off psych drugs, the situation is not so bad. I assumed that you meant a much worse situation: a situation where someone is literally checking if a person “has taken their meds”. Or giving the person “their meds”.

    When someone’s family members are able to control a person’s life to such an extent, I don’t think that it can be good for anyone, even if they also provide some support. Being treated like a child is incredibly toxic. And if we assume that we can’t find any other source of emotional/social support than the person/people who control (s) us, we are being too pessimistic.

    You mention “the abused homemaker who if they left would end up homeless, hungry, and cold”. But being systematically abused can be actually much worse than being homeless, hungry and cold. It is often destroying the abused person, both mentally and physically (even if the abuse is only emotional) – and some victims of domestic violence actually end up being killed by their abusers or dying because of their injuries.

    Of course a woman who has an abusive partner may assume that her situation “is not so bad”. After all, she has a roof over her head and maybe her partner has a good income; and the partner is not abusing her all the time. But abuse has an impact on the way of thinking of abused people – many of them come to see completely abnormal situations as normal.

    People controlled and abused by their partners are never advised to simply endure the abusive situation. There is always a way out, as long as the victim is able to leave the abuser’s house or make a phone call. Being homeless is scary, but it is not as horrible as being controlled by someone until one’s death or the other person’s death. Even some children and teenagers choose to run away from home.

    If an adult person diagnosed with a mental illness thinks that their parents or partner have the right to check if they are taking “their meds” – to treat them like a naughty child until the end of their life and to literally force them to take toxic drugs which can cause irreversible damage – this means that the person sees an abusive situation as normal.

    Unfortunately, many people assume that if they are “mentally ill”, they automatically have less rights than others. Many people assume, too, that as long as their controlling parent(s) or partner is being “nice” – not physically violent, not calling them horrible names etc. – the situation is “not so bad”. In reality, being controlled and being infantilized for many years or even decades, as well as being fed toxic drugs, is extremely damaging – both mentally and physically.

  • Willoweed, what you say is both thought-provoking and very sad. I am very sorry to hear that other people treated you so bad when you wanted to come off psychiatric drugs.

    You say that revealing that one is trying to quit psych drugs “causes the opposite of social support” and all kinds of emotional violence. But when someone’s family members/friends are so toxic and cruel, can we actually say that the person does have some kind of social support as long as s/he stays on psych drugs?

    When people look down on someone and control him/her, they don’t provide any genuine social support. I think that it is much healthier to lose such a “support network” than to remain under the power of very toxic, controlling and brainwashed people.

  • Dear Mwati, thank you so much for sharing your story, and particularly for mentioning your terrifying experience with this large man who opened the bathroom’s door, the very problematic lack of separation of the sexes in many psychiatric hospitals and the fact that both the rooms and the bathrooms were unlocked.

    I live in Poland. In 2012 I was having mental health issues and I actually spent one night locked from the outside in a large room in a psychiatric hospital where I came to seek help. I was supposedly locked in this room “for observation purposes”. Two men were sleeping there. I was frightened and I did not sleep all night. Until today I simply can’t understand why the staff locked a woman in a room with two men!

    Finally I was involuntarily committed to the same psychiatric hospital. Again, I was quite frightened when I saw that heavily medicated women were sleeping in unlocked rooms. Strangely, the women’s bathroom was also unlocked, whereas the doors of the cubicles in the men’s bathroom could be locked from the inside (for this reason I actually often used the men’s bathroom). All the showers were unlocked. Fortunately, after some days I realized that the men on my ward did not seem dangerous, so I was able to use the showers.

    Just like you, I am unable to understand why the sexes are often not separated in mental hospitals. As you said, men can be actually dangerous to women on such wards or harass them. And it is very true that some of the men on locked wards do have a criminal background…

  • In Poland psychiatric survivors may be actually refused any form of financial assistance, even if they don’t have any other regular income. This is what happened to me this month. I was refused a disability pension despite my diagnosis of “schizophrenia” and even though I don’t have any regular income. I am now going to have to appeal to a court. There are, however, many people who may find it very difficult to appeal to a court in such a situation

    Poland is one of the countries where being refused a disability pension may literally mean hunger and homelessness. The “social assistance” benefits for the poorest of the poor are extremely low here.

  • Caroline has an excellent point. First of all, the “mentally ill” are definitely seen as “die-able”. People diagnosed with “schizophrenia” die on average 20-25 years earlier than the general population. The extreme stigmatization of these people and the treatment with neuroleptics are among the causes of this problem.

    Secondly, as Caroline has pointed out, Thomas Teo consistently uses the term “people with mental disabilities”. This is extremely problematic. The term “mental disability” is very often used to refer to cognitive/intellectual disability. Only some people diagnosed with serious mental illness have a cognitive/intellectual disability. Many of them are actually highly intelligent and educated.

    Dr. Teo lumps together under the term “people with mental disabilities” people with diagnoses like “schizophrenia” and people with an intellectual/cognitive disability. Even when he talks about the Nazi T4 “euthanasia” program, he does not say that the Nazi regime deliberately set out to exterminate people diagnosed with “schizophrenia”. Psychiatric patients were actually the first victims of the Nazi gas chambers.

    The German director Florian Henckel von Donnersmarck shows the fate of many psychiatric patients under the Nazi rule in his film “Never Look Away” (2018 – one can read the script of the film online). A young, highly intelligent, sensitive and creative woman is put in a psychiatric hospital after a mental breakdown. Some years later the Nazi doctors decide to first sterilize and later murder her, like many others.

    When she finds out that she is going to be forcibly sterilized because of her diagnosis of “schizophrenia”, she says “I know I’m healthy”, but a doctor coldly replies: “Three experts are of a different view” – though we plainly see that there is absolutely nothing wrong with her; she is only much too honest and outspoken for the doctor’s liking.

    She later dies in a gas chamber with a group of other women, including a woman with Down syndrome and a woman with a physical disability. It is crucial to emphasize that many German and Austrian psychiatrists were actively participating in this genocide.

  • Kindredspirit, thank you so much for your comment. I am still wondering how people from the Social Security Administration can find out about a person’s “failure to follow prescribed treatment” in the case of orally administered psychiatric drugs unless the patient informs them about it.

    I am also wondering if the Social Security Administration expects neuroleptics to return a person diagnosed with “schizophrenia” to “substantial gainful activity”. After all, “schizophrenia” tends to be portrayed as a debilitating brain disease which impacts people’s cognitive functioning; and many psychiatrists claim in their books and articles that neuroleptics don’t help with the so-called negative symptoms of schizophrenia (this is yet another psychiatric construct!).

  • Evan, many thanks for your reply. I think that there is currently no way of controlling if a person really takes neuroleptics unless they get them in the form of neuroleptics. I actually remember reading an article by a US psychiatrist who wrote that patients could be rewarded with money for taking the drugs! If psychiatrists have such ideas, it means that it is actually very difficult to force people to be “compliant”, even if they are on a social security disability income.

    I read yesterday that even if a psychiatrist knows that a patient is taking the medication “inconsistently”, they should simply mention it in the Adult Disability Report. As I said earlier, psychiatrists know very well that many people take these drugs “inconsistently” (if at all). “Non-compliance” is much more frequent than many assume.

    I hope that I am again going to get a disability income myself this year. But I will never agree to take these “meds”, even in a very small dose. I know that I don’t need them. My only problem is that for various reasons (but not because of “mental illness”) I have been unable to find a decent, meaningful steady job in my country after losing my academic job.

  • Caroline, thanks a lot for your reply. You say that you are worried that you might lose the disability income if you don’t take any psychiatric drugs. Could these people find out that you are no longer taking these drugs? And is there actually a law saying that a disability income can be paid only to “compliant” patients?

    If only “compliant” people with a diagnosis of “schizophrenia” can get a disability income in the US and if someone is somehow controlling their level of “compliance”, this is truly barbaric!

    It is really great to know that you are now almost completely off neuroleptics. I also hope that you will be able to find a decent job, but I do hope that you will be able to completely come off psychiatric drugs even before you find a job.

    Regarding marriage, I am happy to know that you now have such a relaxed attitude. What I should have emphasized more in my earlier comment is that the idea that everyone should have a partner is a product of social conditioning, though many people are not aware of it. There is no real reason to assume that people are the happiest if they are in a monogamous live-in relationship…

  • Caroline, I was getting a disability income last year because of a diagnosis of “schizophrenia”, but I was not using neuroleptics. Of course I could not be open about it with my psychiatrist. I am mentioning my experience because I think that people who get a disability income should be aware that they don’t have to take psychiatric drugs.

    According to many studies many (if not most) people diagnosed with “schizophrenia” are not regularly using neuroleptics. Obviously it is seen as a huge problem by mainstream psychiatry, as “non-compliance” and a sign of “anosognosia” (lack of insight). Only some of these people talk/write openly about their experiences.

    Many of us do need “survival money” (I am also in favour of a universal basic income) and many people find it difficult to “disobey” psychiatrists. But neuroleptics are so harmful that we should never feel guilty if we refuse to take them – even if it means that we can’t be open with psychiatrists.

    I did have a job myself, I even worked as an academic lecturer for 10 years. I now work as a book translator, but I am unable to earn enough to survive.

    I have not been able to find a new steady job – both because of my own personality (I am an introverted and bookish person) and because of the sheer scarcity of job offers for people with my type of education and professional experience in my country. Fortunately my mum is able to help me (my dad is no longer alive) – otherwise I would be in a very difficult situation.

    I have never been in a typical relationship, but I have realized that I should not feel frustrated because of it – that the idea that everyone (and especially every woman) should keep trying to find a “perfect” partner who will adore them is based on a myth.

    I know that I am capable of love, but I feel that it is difficult to find true requited love in our times – it seems that many people are actually afraid of real emotional closeness or cultivating a very idealized and unrealistic image of love.

  • 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”…

  • 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.

  • 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

  • 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

  • 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…).

  • 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.

  • 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.

  • 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.

  • Rich, thank you for sharing your story with us. You are actually doing something very important and beautiful – much more important and beautiful than many paid jobs. I am sure that there are women who would be ready to accept you just as you are – there are many women who simply look for love and companionship, for a good, caring, sensitive man. And if anyone asks you “What do you do?”, you could say that you are a carer and an activist!

  • NotCrazyAfterAllTheseYears, I understand you so well. So many people assume that there is something wrong with those who simply love solitude… This idea that everyone should crave and enjoy “socializing” with coworkers etc. is very oppressive. I understand your feeling that you were losing time you needed for other things; this is one of the reasons why I have always avoided all kinds of work social events. And I, too, have been using long walks for therapy (and exercise) for years!

  • Sam, I totally agree with you. Why should we assume that “normal”, “healthy” people should be capable of enduring huge amounts of stress without ever “crumbling”? Many people are not aware of the impact of stress on their mental and physical health. We live in a world where people are expected to be like robots – constantly full of energy, productive, enthusiastic and ready to take up new challenges… Unsurprisingly, many people’s minds and bodies end up being damaged under this pressure.

  • KateL, I am so sorry that you have suffered serious memory loss because of ECT. It is truly shocking that the psychiatrist actually later callously claimed that you had a personality disorder!

    I am happy that you have stopped feeling guilty because of being on disability, and I hope that the shame will also soon disappear. There is absolutely nothing wrong with being on disability. The idea that those who don’t have a job should be ashamed of themselves is profoundly toxic and reflects the cruelty of the world we live in…

  • I am glad that you found my story interesting! What I meant is that the idea that people diagnosed with schizophrenia should all strive to have a paid job is inherently toxic. For many of them this is simply an unachievable goal, especially if they disclose their diagnosis to potential employers. And many jobs in today’s societies are much too stressful for people prone to psychosis and paranoia… Finally, psychiatric survivors frequently have very limited social networks, which makes it even more difficult for them to find paid employment.

    There are all kinds of meaningful things one can do without having a paid job – including helping other people. This winter I was able to help my brother who had been put on a locked psychiatric ward because of suicidal thoughts. I was able to visit him every other day in hospital and I stayed for a month with him after his release. I would not have been able to do it if I had a job.

    My life is filled with intellectual activity (I even translated a book last year for a publisher), and I also try to support and encourage other people whenever I can. I am aware that I am actually saving the public health care system plenty of money thanks to my recovery and my decision to get involved with the psychiatric system only when it is unavoidable.

    I think that we should question the assumption that people are “productive” only when they are in paid employment. Care work and domestic work is very often unpaid, though it is of crucial importance. Intellectual and artistic work, too, is often unpaid or badly underpaid.

    As I explained earlier, I did try to find a job despite my schizophrenia diagnosis – and I was unable to reach this goal despite my PhD, my work experience and the fact that I did not disclose my diagnosis. I also tried to get admitted to a course in Addiction Counselling, but I was not admitted – for reasons which have never been revealed to me.

    I refuse the idea that I should feel bad because I am not in paid employment… If I had kept desperately trying to find a job without having any source of income, this would have been devastating to my mental and physical health. Accepting a job which might have triggered a breakdown would have been only slightly less devastating.

  • I was diagnosed with schizophrenia 8 years ago, after a psychotic episode (I have never had a so-called relapse). I completely reject this diagnosis and I came off the prescribed neuroleptic as soon as it was possible.

    I am a PhD holder and I worked for 10 years as a university lecturer (I returned to work after my psychotic episode, without telling anyone at work about my diagnosis). However, I found this job very stressful and I felt extremely isolated in my workplace. I am currently in the process of being diagnosed with Asperger’s syndrome.

    I have not been able to find a new job after my university job contract expired (I live in Poland where even a PhD does not guarantee a decent job; I could try to find a job as a schoolteacher, but I know that this job would be much too stressful for me). I finally decided to apply for a disability pension last year on the basis of my schizophrenia diagnosis.

    I now feel happy and peaceful, though unfortunately this year I have to reapply for the disability pension despite my diagnosis. (In fact, in Poland – unlike in the US – even people diagnosed with schizophrenia have to prove, again and again, that they are unable to work.) I am worried because my psychiatrist (whom I have not seen for a year) might find out that I have not been taking neuroleptics. I know that I don’t need these drugs and that they are very toxic.

    I think that it is important to realize that some people can be perfectly happy without a job. My life is not boring or empty; I now feel so free and I can do what I love. I must also add that I feel much better with people from whom I don’t have to hide the fact that I am a psychiatric survivor. My best friend is also diagnosed with schizophrenia (like me, he is not taking neuroleptics).

  • Ann, I had a very similar experience with a psychiatrist seven years ago. He told me after one conversation with me (it was the only time when he saw me) that I did have schizophrenia and that if I stopped taking neuroleptics, I might develop “drug-resistant schizophrenia” and need electroshocks.

    He told me that I did have schizophrenia, though I was no longer having any psychotic symptoms and though I was working at a full-time job. He did not realize, however, that – like you – I was secure enough not to listen to him and was actually no longer on neuroleptics while talking to him.

    I have had only one psychotic episode (in 2012). Since that time I have never had a so-called relapse, though I have not been taking any psychiatric drugs since November 2012. I am so happy that I did not listen to psychiatrists in 2012!

  • I, too, would like to thank John Hoggett for his comments. Those who are against possible future Covid-19 vaccination forget how many people this virus has already killed.

    I have been personally vaccinated against tuberculosis, diphtheria, tetanus and pertussis (this was mandatory in my country) and also against yellow fever (before a travel to Africa). What harmed me was not any of these vaccines, but an anti-malaria drug called Malarone which can cause auditory hallucinations (“voices”).

    I can’t really understand why many people are now so afraid of vaccines – but it must be largely because all kinds of weird “theories” can be now very easily spread thanks to the Internet.

    I am firmly against forced psychiatric drugging, but this does not mean that I also reject modern medicine and the idea of mass vaccination against dangerous viruses and bacteria.

  • Air pollution is down etc., but at what cost? More than 37,000 people have died and so many more will die – what about all these lost lives, all these people who could not breathe, all these people who died because there were not enough respirators? And I don’t think that the pandemic will be enough to bring real global and lasting change in attitudes towards the environment!

  • What helped me was learning not to worry about what other people think about me and my life; doing things I love and supporting struggles I find important (the struggle against coercive psychiatry is one of them); trying to find people who accept me as I am; learning to appreciate more all the good things in my life instead of suffering because of unachieved goals or dreams.

    I have to disagree with Bippyone that life is worth living only if we are loved. Those of us who feel truly loved by many people are lucky. Some people do/did not feel loved even by their own parents… I personally started feeling much more free and much less frustrated when I realized that I might never find someone who would love me in a romantic, passionate way and that I should not feel like a failure only because I have not found such a person.

  • Rachel, where have you read that “even frail octogenarians in nursing homes are more apt to beat the bug than die. 90% survival odds in worst case scenarios”? Very large numbers of people have allegedly already died in care homes in France and Spain. I have read that according to experts up to 100,000 people may die in French care homes.

    I think that the fatality rate for frail octogenarians is much higher than 10% – and even higher if they live in care homes. Let’s remember, too, that many people die because there are not enough respirators.

  • And I think that one’s chances of reintegrating mainstream society after an episode of psychosis are much higher than you believe. The problem is that so many people don’t realize that recovery is perfectly possible, that the very concept of “schizophrenia” has no scientific validity and that it is absolutely not true that people with this diagnosis have to take antipsychotics until the end of their lives. When people see themselves as incurably mentally ill, recovery is very unlikely.

    Another problem is the persistent stigmatization of people diagnosed with “schizophrenia”. The label is so stigmatizing that it has a very damaging impact on a person’s self-esteem (for some years I was not even aware how damaging it was to my own self-esteem) and life. People diagnosed with “schizophrenia” are still very often discriminated against by society if they are open about their diagnosis or their stay in a mental hospital.

    And when people diagnosed with “schizophrenia” don’t fully reintegrate mainstream society in the sense of having a job, getting married etc., in many cases it is not because their mind is broken, but because leading a “typical” life would be much too stressful for them and because some of them have never found socializing easy… I personally think that my experiences with being frequently rejected and excluded by my peers and co-workers have not only contributed to my psychotic episode, but also explain why I now don’t feel ready to work in jobs where I may again feel painfully rejected and excluded by other people.

  • yeah_I_survived Unfortunately society in these times was also very harsh, inhumane and cruel… The author mentions so-called workhouses: English people who were deemed fit to work, but were unable to support themselves were routinely sent to these institutions where they had to live and work in horrible conditions.

  • neo_liberalism_say_what, many thanks for your comments! I was very surprised by the author’s implication that the rate of recovery after the first episode of psychosis is very low even if people are not on antipsychotic maintenance treatment…

  • Unfortunately – as Boans has pointed out – neuroleptics are part of the Jamaican model of mental health care. In his article, Prof. Hickling quotes an author who writes that (compared to Britain) in Jamaica:

    “There seems to be a much greater willingness on the part of families and neighbors to cooperate with the services,locate people when they need help and make sure they take their medicine. It’s accepted as part of the community’s responsibility”. (one can download the whole article for free here: http://sci-hub.tw/http://doi.org/10.1177%2F1363461519893142).

    So making sure that patients take their “meds” is, sadly, part of this model – and Prof. Hickling clearly has no problem with it…

  • survivingthesystem, I am very sorry to hear about your experiences. And I totally agree with you: I, too, felt dead inside on antipsychotics. I was unable to have a normal conversation. I was unable to write in an interesting, imaginative, creative way. I found reading tiring and I was unable to read a long paragraph in a book – on Abilify I was scared whenever I saw a long paragraph, though I have always been a book lover!

    I also suffered from horrible akathisia which made even commuting to and from work quite stressful. And at work I was happy that thanks to my job (university lecturer) I was able to walk in the classroom in order to cope with my akathisia.

    I felt an immense relief when I came off Abilify – I felt that I became again my old self!

  • Rosalee, of course I agree with you that psychiatric labels very often lead to discrimination by the health care system. Is it possible to get re-diagnosed in Canada? In my country, Poland, fortunately doctors who are not psychiatrists don’t seem to be aware of my diagnosis (“paranoid schizophrenia”); and even if they were, I know where and how to check if I am getting the right treatment for a disease, I know how to stand up for my rights, and I know what to do if I am ever discriminated against.

    It seems to me, however, that Sam was talking about the impact psychiatric labels have on people’s self-esteem – about “shaming” by psychiatrists – and this is what I commented on.

    In my case, my “paranoid schizophrenia” diagnosis really damaged my self-esteem for some years, though I quickly rejected this label. But I am sure that it would be much more damaging if I had not realized many years earlier that people’s opinions about me did not define me…

  • Sam, it is perfectly possible to free oneself from the fear of being “the loser”. It is perfectly possible, too, to stop worrying about the opinion of people who want us to feel bad about ourselves.

    I have personally often faced rejection from my peers since I was a little girl. My being a very academic, bookish and introverted girl was certainly one of the causes of this rejection. I have never been “popular” and I just accepted it instead of trying to please people who disliked me, rejected me, and maybe also felt threatened by me.

    I have gradually stopped worrying about what narrow-minded, intolerant people might think of me. Why should such people have power over me? I think that my independence was one of the reasons why I found it very easy to disobey the will of doctors who thought that I was “mentally ill”, though they knew virtually nothing about me and my life.

  • DShanin, what makes you assume that people are prescribed antipsychotics in order to be “safer for society”? I am always depressed by the assumption that people who have experienced psychosis are dangerous. I was prescribed antipsychotics, though I was never violent and no one was afraid of me. I was prescribed antipsychotics only because I had a psychotic episode. I have never caused any trouble to anyone since coming off these drugs…

  • Sam, you are so right! I think (hope) that psychiatry is unable to stop the processes leading to greater respect for individuals’ rights. I hope very much that forced drugging will be increasingly recognized as a violation of basic human rights.

    One of the problems is that many people seem to be unaware that many patients are literally forced to take psychiatric drugs (even when they are very quiet on the ward and don’t violate any rules!). Another problem is that many people generally know very little about those who have experienced psychiatric incarceration and are often ready to believe all kinds of negative stereotypes.

    In consequence, there is little or no compassion for people forced to take these drugs in mainstream society. The assumption seems to be that they “need” these drugs – and/or that they are so different from “normal” people that it is difficult to relate to them and their experiences. The power of stigma continues to silence countless people who know what it’s like to be on a locked ward…

  • Sam,

    Yes, in a way he admitted that the drugs might not work, but obviously what he meant is that they might not work for “uncooperative” patients who don’t want to obediently take the “meds” they were prescribed! It’s a pity that I didn’t have duct tape on me 😉

    In my country (Poland) ECT can still be used as a treatment for schizophrenia if neuroleptics don’t work. Fortunately even in Poland even involuntarily committed patients always have to agree to ECT, unless doctors believe that their is a direct threat to the patient’s life. This was one of the reasons why I was not scared when the psychiatrist mentioned ECT!

  • Steve, I totally agree with you: most psychiatrists accept only “recovery” on their terms, that is, when a patient agrees to take neuroleptics until the end of his/her life and becomes a compliant member of society! The way John Nash’s story was distorted in “A Beautiful Mind” is simply disgusting, though not in any sense surprising…

  • Rachel777, it sounded indeed like a threat, and I am so glad that I already knew at that time what to think of it!

    I fully agree with you that people who recover make most psychiatrists feel very uneasy. I agree, too, that many (if not most) psychiatrists are not sadistic. However, it is difficult for me to say if they really believe that “schizophrenia” is a debilitating brain disease etc., or if they are simply afraid of challenging biopsychiatric beliefs.

    Another psychiatrist claimed that I had “disorganized thinking” and was unable to explain what he meant. Until today I don’t know if he really believed that there was something wrong with my thinking because of my diagnosis, or if this was something he felt he had to say as a psychiatrist talking to a patient with “schizophrenia”.

  • Many thanks for sharing your story, Laura. I am very sorry to hear that you are still forced to undergo injections of an antipsychotic. The forced drugging is one of the things which make me very angry about psychiatry.

    I am actually almost the same age as you (I will be 40 in June), and I was diagnosed with “schizophrenia” in 2012, after only one psychotic episode (I was hearing “voices” and I was very paranoid). I was involuntarily committed to a psychiatric hospital for more than a month. I decided to come off neuroleptics some weeks after my release from the hospital. Fortunately no one had the right to force me to take them again. I have never had another psychotic episode.

    I don’t currently have a regular job (I work as a freelance translator and I get a disability pension thanks to my diagnosis), but I feel very happy and I have been leading a completely normal and fulfilling life since my stay in the mental hospital in 2012.

    I am very impressed by your openness and by what you have achieved, and I hope very much that you will find a way to free yourself from neuroleptics. I wish you all the best.

  • Rachel777,

    I actually had a very similar experience with a psychiatrist in 2012. I wanted my schizophrenia diagnosis reevaluated (I had fully recovered from a psychotic episode and I knew that I no longer had any hallucinations or delusions).

    The psychiatrist (quite an unpleasant man) asked: “Do you always talk so much?” When I said that I did, he claimed that I might have not only schizophrenia, but also “an affective disorder”. He said that if I did not keep taking my “meds”, I could develop “drug-resistant schizophrenia” and need electroshocks.

    Unbeknownst to him I had already come off Abilify (without any difficulties). For almost 8 years I have stayed away from all kinds of psychiatric drugs despite my diagnosis. I was never hospitalized again. This psychiatrist tried to scare me into being a compliant patient and clearly found me annoying!

  • Fiachra, great to know that you, too, came off neuroleptics a long time ago – and I fully agree with you that “schizophrenia” does not exist! I have recently noticed that some young men who have been using street drugs are diagnosed with “schizophrenia” in my country. Sadly, many of them think that they really suffer from a severe mental illness and become long-term psychiatric patients…

    I have recently had to tell my own brother who had spent some time on a locked ward because of suicidal thoughts that he, too, might one day be diagnosed with “schizophrenia” if he is not careful…

  • And – very importantly – this new drug can also cause tardive dyskinesia. The prescribing information leaflet even states after mentioning TD: “In patients who do require chronic treatment, use the lowest dose and the shortest duration of treatment producing a satisfactory clinical response. Periodically reassess the need for continued treatment.” (page 2 here: http//www.intracellulartherapies.com/docs/caplyta_pi.pdf).

    But we all know that people with a diagnosis of schizophrenia are usually put on neuroleptics for life… I came off a neuroleptic about a month after my first and only psychotic episode in 2012 (I was diagnosed with “schizophrenia” after this episode). Coming off the neuroleptic has been one of the best decisions in my life. I have never had a psychotic episode again despite my diagnosis…

  • Dear Vitas, thank you so much for sharing your powerful, deeply moving and excellently written story. I can relate so much to your experiences because my only psychotic episode, 7 years ago, was clearly caused by a relationship breakdown.

    I started “hearing voices” when I felt rejected by a man I loved. I was involuntarily committed to a mental hospital and put on neuroleptics – with horrible side effects, especially in the case of Trilafon (perphenazine) – and I experienced the dehumanizing atmosphere of a locked ward. I did not receive any psychotherapy at the hospital where I spent more than a month – I was kept there even when I no longer had any symptoms.

    Fortunately I decided to come off neuroleptics a month and a half after being released from the hospital and I have never used them again. I have never had another psychotic episode, though psychiatrists claimed that the one I had experienced was caused by a chemical imbalance in my brain… I wish you all the best and thank you for being so open about your experiences.

  • Thank you for explaining your situation, maradel. Fortunately I know for sure that doctors don’t know about my psychiatric diagnosis. And even if a doctor finds out about it one day, I am not worried because after my psychotic episode I had absolutely no contact with the psychiatric system for more than 6 years – doctors would probably assume that I must have been misdiagnosed or that I am a case of full recovery from schizophrenia.

    No one knew about my diagnosis in my former workplace – I did not tell even my boss about it. Wherever I go, no one knows that I was once an involuntary mental patient.

    In my own experience, some doctors have been clearly impressed by my education level and outspokenness. The head doctor at the mental hospital even lent me a book on the history of psychiatry and was very respectful towards me. Another doctor (a non-psychiatrist) not only likes me and respects me, but has once even shared with me an article from a medical journal! So fortunately there are doctors who don’t feel threatened by women with doctorates…

    At the same time, I have to admit that I am trying to avoid conflicts with doctors unless I strongly feel that I have to stand up for myself. As to compliance, in my opinion a certain level of compliance is very wise in psychiatric hospitals. Thanks to my compliance I was not put into restraints and I did not undergo forced injections. Thanks to my compliance I was not really traumatized by my stay in the mental hospital. Sometimes it’s better to be compliant – it can even save our life…

  • I understand, Rachel, but still they have no right to yell at you – it increases your stress, and I don’t think that it will make you stop… Maybe you could try to replace scratching by vigorously massaging your scalp with your fingers? But such habits are not unusual in any sense – my mum used to bite her nails until they bled when she was a young girl…

    I think that your family members don’t realize that they are hurting you emotionally. Maybe they have not experienced healthy, non-abusive love themselves!

  • maradel, as someone diagnosed with paranoid schizophrenia I definitely don’t think that the diagnosis in itself is worse than the damage caused by psychiatric drugs. I got my diagnosis more than 6 years ago, but I am able to lead a normal, happy and free life because I was on neuroleptics only for a short time.

    Very few people know about my diagnosis, so it is not really stigmatizing to me. I am very glad that I never told anybody in my former workplace that I had been diagnosed with schizophrenia. Keeping this secret has been much easier to me than facing the consequences of “coming out”…

    If your disability results from failed surgeries, why did you have to reveal your psychiatric diagnoses when you applied for disability? This is something I feared myself in the past – the possibility of being treated worse than other patients because of my psychiatric diagnosis. I am so sorry about the way you are now treated by doctors! But doesn’t their attitude change when they find out that you have two doctorates? (I am sure that my own PhD and my academic job made doctors and nurses treat me better when I was at a psychiatric hospital).

    I think that migrating to another country is a great idea in your situation – wonderful that it’s possible for you! And you are right: fear of those who are different is surely one of the main reasons why “mentally ill” people are treated so horribly!

  • yeah_i_survived: Like you, I am pessimistic about Hollywood. However, “55 Steps” is not a Hollywood movie – it is a German-Belgian coproduction and it will be released only in select cinemas in the US. I really don’t think that such a film could have been made in today’s Hollywood!

    As to actors, let’s not forget that Kirk Douglas wanted to turn “One Flew Over the Cuckoo’s Nest” into a film for years – and his son Michael co-produced it. So yes, there are actors who genuinely care about important causes, including the cause of psychiatric patients and survivors…

  • You are so right, Rachel! I am really fed up with the way “mentally ill” people are still portrayed in movies. I have even recently seen a seemingly well-intentioned indie movie where a woman who heard voices was a scary character who had killed her own son…

  • I agree, Steve, and thanks for the facts on John Nash. I was also able to “stay under the radar” – I stopped any involvement with psychiatrists after coming off neuroleptics in 2012 and since that time I have always been able to stay balanced, no matter what happens in my life. I think that those who want to suppress the truth about Nash are also acting on the assumption that the “mentally ill” don’t know what is good for them and have to be protected from any “dangerous” knowledge…

  • I agree with you: it was very impressive that Eleanor was able to live on her own, talk to lawyers, and generally live an independent life. And – very importantly – despite her traumatic experiences and suffering the film portrayed her as a happy, cheerful person who “every day found something in her life to enjoy, something to be grateful for”. In this sense the film carries a very uplifting message. I may have been too harsh in my earlier comments, though I continue to feel that this important and heart-warming film has some major weaknesses. I hope that one day many films will make it clear that the boundary between “mentally ill” and “normal” people is wholly artificial and incredibly harmful, and that neuroleptics are always toxic and debilitating and should never be used for a long time (if at all). Nowadays one really does not need a lot of money to make a film without stars or a documentary, and hopefully we will see many independent films challenging mainstream views on mental health issues.

  • Rachel, you believe that continual patronizing and put downs can cause childish behaviour. But was the real Eleanor childish? We don’t know what she was really like and if she would be happy with the way she was portrayed in the film…

  • Frank, I agree with you. I know that John Nash was not happy with the erasure of this crucial fact in the film about him. Mainstream elites seem to be scared at the prospect that “schizophrenics” may be encouraged to stop taking “their meds” by a film! Fortunately many people know that these “meds” are poison…

  • Rachel777, you are entirely right! And Eleanor Riese allegedly developed her “schizophrenia” after suffering childhood meningitis http://law.justia.com/cases/california/court-of-appeal/3d/209/1303.html . She even says near the end of the film “That was when they put the shunt in my head… to drain the water off my brain after I had spinal meningitis. Yeah. Before that, I wasn’t retarded, and nobody called me mentally ill. I was just like everybody else.” But this does not make her lawyer conclude that maybe Eleanor has never had any mental illness!

  • Concerned Carer: I was also probably hoping for too much! Obviously it is great that such a film was made. I think, however, that one could make a much better, much more powerful, much less patronizing and much less predictable film about Eleanor Riese. Powerful, uncompromising and non-patronizing films about “mentally ill” people are being made – the Romanian film “Beyond the Hills” (2012) by Cristian Mungiu is a great example. Unfortunately the people behind “55 steps” were much too Holywoodian in their approach and did not question many of the widespread assumptions about mental health issues and mental patients.

    Helena Bonham Carter surely put a lot of effort into playing her character. The problem is, however, that she has clearly her assumptions about “schizophrenics” – that they are people who don’t look, don’t behave and don’t talk like “normal” people; who can say something considered rude out of the blue etc., who have their obsessions etc. This myth perpetuates prejudice towards psychiatric survivors, but the truth is very different. I have a close friend who was diagnosed with schizophrenia many years ago and who is not using neuroleptics; I was literally shocked when he told me about his diagnosis – it was impossible to guess from his behaviour and speech that he had been a mental patient (like me). By the way, he told me that he knows some people who have been clearly damaged by neuroleptics.

    I would say that Helena Bonham Carter was trying too hard to transform herself into a “schizophrenic”; but there is no need for any transformation, unless we assume that a “schizophrenic” is somehow deeply different from “normal” people. I feel that Bonham Carter (unsurprisingly) wanted to show the range of her acting skills, her capacity for metamorphosis, but it came at a heavy cost: it was impossible for me to identify with Bonham Carter’s Eleanor, and the character did not make me think of any real people diagnosed with schizophrenia, but of Dustin Hoffman’s character in “Rain Man” or Sally Hawkins’s character in “Maudie” – two other excellent examples of actors doing their best to metamorphose themselves into an “odd” person.

    Isn’t it striking that the reviewer from “Hollywood Reporter” http://www.hollywoodreporter.com/review/55-steps-film-review-tiff-2017-1036523 wrote: “The actress certainly dresses, speaks and moves as if she were in one of her former romantic and professional partner Tim Burton’s grand guignol Gothics. And her snarly demeanor and exaggerated body movements are so shamelessly self-indulgent that they demean the very person the movie aims to honor”?

  • I agree with Sera Davidow that it is an important film. However, I found it deeply disappointing, and in my opinion it does not truly challenge the status quo. The people who made the film are not against neuroleptics: Helen Bonham Carter believes that Eleanor Riese simply needed “the right amount of medication” (http://www.huffingtonpost.co.uk/entry/helena-bonham-carter-55-steps-interview-eleanor-riese_uk_5bc4f660e4b0fed45beb93d7). The film does not show or suggest that Eleanor Riese came off or wanted to come off neuroleptics! Eleanor’s diagnosis – paranoid schizophrenia – is not even once questioned in the film.

    I found Eleanor’s portrayal very patronizing and cringeworthy. She is depicted as childish and even arrested in her psychological development – an exuberant little girl in a woman’s body – obsessed by her rosaries and completely asexual. The film offensively implies that mental patients are “children in adults’ bodies” and intellectually disabled. It will surely not convince “normal” people that mental patients are humans just like them!

    Interestingly, the film never asks the question WHY Eleanor became psychotic and what made her completely suppress her sexuality. I know very little about the real Eleanor Riese, but she may have been a victim of sexual abuse or some other trauma before she became psychotic – the film never even suggests such a possibility because it chooses to portray “schizophrenia” as a mysterious brain disease…

    I was also annoyed by the film’s ending. Eleanor Riese was killed by neuroleptics at the age of only 47. And because of neuroleptics she had to use a catheter to urinate for many years – I once had a catheter inserted at a hospital and I know how it hurts… But the authors of the film want us to feel good when the lawyer receives the award after Eleanor’s death – they want us to believe that this is actually a story with a happy ending!

  • It’s very sad that (in spite of everything she has found out) Helena Bonham-Carter says that Eleanor Riese started feeling better when she came “onto the right amount [of medication]“… So she is not against neuroleptics – she is merely against over-drugging. It is true that the film does not suggest in any way that Eleanor came off neuroleptics. And I guess that the other people behind the film have the same approach as Bonham-Carter… You write that the screenwriter, Mark Bruce Rosin, explained that the film couldn’t fight all the issues, but is there any proof that he knows that there is no “right amount“ of a neuroleptic? And can one find somewhere online Rosin’s explanations on the way neuroleptics were portrayed in the film?

  • yeah_I_survived: These “Christians” don’t know their Bible – Jesus healed a man who would probably be a mental patient today! The man lived in the tombs and cut himself with stones… One can find the story in Mark 5:1-20 and Luke 8:26-39.

  • Just an update on my story: I have never had a relapse of psychosis, though I have not been taking any psychiatric drugs for more than 4 years and though I have had some difficult experiences in recent years. I would like to emphasize that I have never had psychotherapy – so it’s perfectly possible to recover even after a full-blown psychotic episode without recourse to psychotherapy.

    As to my friend (we later renewed e-mail contact), he has never said anything on my psychotic episode, but this does not surprise me: it is very difficult to discuss such taboo experiences.

  • In my case psychosis developed before I was put on psychiatric drugs and was clearly linked to a very painful personal experience. I had a psychotic episode in the summer of 2012 and I have never had a “relapse” (I have not been on any psychiatric drugs since mid-November 2013) so my psychosis was not caused by a long-term mental illness. My story proves that some people can become psychotic under the influence of trauma – and not because of a “psychiatric drug cocktail” served by cynical psychiatrists – and later make a full recovery. I think that such cases would be much more frequent if many people had not accepted the idea that mental illness is incurable and has nothing in common with a person’s experiences …

  • Thank you very much for your reply and your kind words, Steve ! Of course, I fully agree with you: there is such arrogance in some people’s belief that they “know” what it means to hear voices or to have delusions, even though they have never experienced it themselves. So many psychiatrists and other “experts” never really listen to the “mentally ill” and assume that they are all the same – strange and deeply miserable individuals with malfunctioning brains who have to be on neuroleptics “for their own good” …

  • A correction: my episode was almost 4 years ago, in August and September 2012. I was diagnosed with schizophrenia at that time, but fortunately I was rebellious enough to reject this life-shattering diagnosis and to come off neuroleptics. As I said earlier, I have never suffered another “psychotic” episode.

    The voices did not return even when my father was dying from brain cancer at the end of last year. I am so happy that he knew until the end that his daughter was a happy and peaceful young woman who was wise enough not to believe what psychiatrists had told her and resilient enough to emerge as a stronger, more empathetic and more loving human being from a psychiatric hospital where she had been involuntarily committed …

  • The idea that people who hear voices have a “defect” which makes them unable to recognize their voice as their own is totally unconvincing to me. First of all, how to explain the fact that some people – like me – have had only one episode of voice hearing in their life, even though they are not using neuroleptics ? I had such an episode for more than a month almost 3 years ago – if I have a “defect” in my brain, why do I no longer hear voices ?

    Secondly, I sometimes heard more than one voice (Eliezer Sternberg and Louis Gould would be unable to explain it) and the voice I usually heard sounded like the voice of a real person – someone whose behaviour contributed to my episode of voice hearing. The voices were also often saying very shocking or even terrifying things, things which were source of deep torment and most probably came from the depths of my unconscious. I was certainly not merely “talking to myself” and being unaware of it because of a “defect” in my brain !

    Voice hearing, especially when it is related to painful or even traumatic experiences, is a far more complex phenomenon than Sternberg and Gould believe. Like so many others, Sternberg and Gould want others to believe that people who hear voices have malfunctioning, deficient brains. Like so many others, they do not even mention trauma and other psychological causes of psychotic experiences. They shamelessly perpetuate devastating biopsychiatric myths on “mental illness” and “the mentally ill”.

  • I could not agree more with what Fred said, “Psychiatry is a main reason more people are still suffering from what could have been temporary distress.” For me, the episode of hearing voices was just temporary distress because I completely rejected the terrifying label imposed on me by psychiatrists and very soon decided to come off neuroleptics – without any help from anyone. Sadly, most people diagnosed with schizophrenia really believe that they are severely mentally ill and trust psychiatrists. The diagnosis literally destroys their lives and self-esteem. It is really a pity that the Inquiry into the “Schizophrenia” Label (http://www.schizophreniainquiry.org/; Philip Thomas, who is a blogger on this website, is a member of its co-ordinating group) has not yet published its report (I was awaiting it impatiently).

  • Just like Duane, I am very unpleasantly surprised by Dr Berezin’s claim that “once the self and the plays are fractured, they cannot fully be put back together again” and that it is a “tragic feature of schizophrenia”.

    I was diagnosed with paranoid schizophrenia in September 2012, after more than a month spent (involuntarily) at a psychiatric hospital. My story has been published on this website. I have not taken any neuroleptics or other psychiatric drugs since 15th November 2012, but the “voices” never returned. And today I am much more peaceful, serene, relaxed and resilient than before my episode of hearing voices. I have overcome various fears I had before that episode. I feel really free.

    I still work as a university lecturer – I write articles, I teach students, I present papers at international conferences. No one at work knows about my diagnosis, and therefore no one at work has been trying to make things easier for me and support me because of what I have experienced.

    Let me also add that I have had no professional psychological support of any kind. And unlike many women who have returned to health after one or more psychotic episodes, I cannot count on the support of a husband or partner. I just have to be strong and tough, and I feel that it is good for me: if I viewed myself as “the fragile and vulnerable woman with mental health issues” and in need of being constantly supported and reassured by her psychotherapist and by other people, maybe I would never return to health.

    Moreover, thanks to the many weeks I spent in very difficult conditions in a public psychiatric hospital in Poland with mostly working-class people, I now feel completely at ease with people from all kinds of backgrounds, including young working-class males who once made me feel shy and tense. We all shared the same experiences and fears in the hospital. I do not look at people in the same way since that time, and I fully understand the dangers of labelling.

    There is nothing “tragic” about my experiences. On the contrary, I emerged as a far stronger, more resilient, more open-minded, wiser, and simply more fully human person from this life-changing episode. And I certainly don’t view myself as in some sense “damaged” by this episode and by the stay in the psychiatric hospital.

  • Marian, I can assure you that hallucinations do exist and can be extremely distressing. I suffered a lot because of such (very vivid) auditory hallucinations for about a month. I was often literally terrified, there were some nights when I was unable to sleep and my behaviour sometimes had highly unpleasant consequences. I am very happy that I no longer hallucinate. At the same time, just like you, I think that there is no such thing as “meaningless madness”.

    Sadly, I think, Murray has a lot of experience of being with people who have unusual thoughts. But prejudice, yes, has probably more or less always made it impossible for him to recognize his own prejudice that “delusions”, “hallucinations”, and “psychosis” as in “meaningless madness” actually does exist, for what it is, i.e. no less “delusional” than George Bush’s and Tony Blair’s beliefs about Iraq, or whatever belief he, on the basis of his own prejudice, has decided to be “delusional” in any labeled person.

    To me the most disturbing about this talk is that it is given in front of an audience whose main conviction, and Murray can impossibly have been ignorant of the fact, is that whatever the experience, whatever the belief, it’s never a sign of “meaningless madness”, while Murray doesn’t touch on this obvious and decisive difference of belief with one word, but, simply by completely ignoring the different belief of his audience, adamantly insists on his own belief to be the one and only truth. In Murray’s own understanding: too much dopamine, anybody?

  • I listened to Robin Murray’s lecture with genuine interest and pleasure. Among the things he says, there are things which are completely contrary to the prevailing image of “schizophrenia” and “mental illness”, and I do appreciate it very much.

    Let us not forget that plenty of people are still convinced that “schizophrenia” exists and is a horrifying, uncurable, devastating illness. Shortly after my diagnosis of “paranoid schizophrenia”, I was reading this http://health.nytimes.com/health/guides/disease/schizophrenia/symptoms.html and felt a tinge of horror when I came across the words: “Typically, patients develop considerable cognitive dysfunction (disordered thinking) within the first 4 – 5 years of the onset of psychotic symptoms. Some evidence indicates that the physical disease process in schizophrenia is progressive, as with Alzheimer’s and Parkinson’s disease.” This claim appears on the website of one of the most influential newspapers in the world !

    Murray emphasizes that there is a continuum between “sanity” and “psychosis”. I live in a country (Poland) where the vast majority of people diagnosed with schizophrenia firmly believe that they are, and will forever be, “mentally ill”, and often feel inferior to “normal” people. Murray’s idea of a continuum may be, therefore, very uplifting to many people.

  • I was myself committed to a psychiatric hospital and spent there more than a month, but I am shocked by the comparison made between such an experience and slavery. Anyone who believes that such a comparison is justifiable should read (or re-read), for instance, Frederick Douglass’s “Narrative”. I do believe that such a comparison is highly offensive to the memory of enslaved people.

    In fact – and I realize that it might seem outrageous to some – in spite of my very critical attitude towards mainstream psychiatry I am now glad that I was committed to a hospital when I was acutely psychotic.

    I was then frequently having terrifying auditory hallucinations. They made me often so afraid of my own relatives that at some point I even conceived a plan to travel in secret to some other city, without informing anyone about my whereabouts … I prefer not to even imagine what my family members would have felt if I had realized that plan.

    Some of my experiences at the hospital were very distressing (especially the side effects from one of the drugs, the fact that I was unable to go outdoors for a month and the aggressive behaviour of some of the other patients), but – apart from being expected to obediently take drugs – I did not experience any violence or abuse from psychiatrists and other staff at the hospital.

    I was able to see my loved ones as often as I wished and talk to the head doctor as often as I wished. I was able to spend most of the day reading and listening to music. I knew that I would spend at the most 3 months at the hospital. I would never, never compare my experiences to those of an enslaved African.