Monday, January 24, 2022

Comments by Joanna Badura

Showing 100 of 141 comments. Show all.

  • Jesse, thank you so much for your very kind and thoughtful reply to my comment. Yes, it is very nice to virtually “meet” in this way and the Mad in America website is definitely one of the friendliest online spaces I know!

    I agree with you that no one should have the power to say that someone else is “disabled”. In general, no one should believe that they have the right to label another person in some way.

    You say, “It seems to some that, if one *feels* disabled, then they are.” I don’t personally think that people with various problems are quick to label themselves as “disabled”. I would rather say that many people are quick to embrace various psychiatric labels and often seem to find them somehow reassuring.

    Jesse, you say: “What if you and I could get the help and support we need without having to be referred to as disabled?” Yes, of course people should be able to get the help and support they need without having to refer to themselves as “disabled”. However, I don’t feel that I am forced to accept the label “disabled” in order to have a chance to get financial assistance etc. in my country.

    Let me explain my attitude more clearly. I am genuinely forced to use the “schizophrenia” label in order to try to get a disability payment, though I reject this label. But I have no problem with the term “disabled”. I don’t find it negative, painful or stigmatizing, unlike the “schizophrenia” label.

    I think that labels like “mentally ill” or “schizophrenic” are far more stigmatizing than “disabled”. As we both know, many people fear the “mentally ill” and find them repulsive, believe that they should be forcibly treated etc.

    You say that the label “disabled” can “lead many people down the very dangerous road of taking dangerous psychiatric drugs”. However, people start taking or being forced to take these dangerous psychiatric drugs when they get a psychiatric label – not when they are labelled as “disabled”.

    No psychiatrist has ever told me: “you are disabled”. And if a psychiatrist had used this label, it would have made me feel much better than the labels “schizophrenia” and “mental illness”.

    Of course in a sense everyone can say: “there are things I can’t do or don’t have, there are things I can’t achieve” etc. But I am not talking simply about individual limitations and frustrations…

    As I have been trying to explain, I know that my development has been strikingly different from the one of most people. Even today I find it difficult to talk about it because I know that most people take certain things for granted…

    To take just a few examples, for long periods in my life I was used to not having any friends, not even one. I have never assumed that I would find a partner as an adult. I did not have boyfriends.

    I found my only real relationship only in my late 30s, after some very painful experiences. Some men clearly assumed that I was desperate or that there was something wrong with me – in fact, in some cases I was ready to give plenty of love and attention while expecting very little from the other person.

    As I said earlier, I was extremely isolated in my workplace. I am used to being rejected by other people for reasons I don’t really understand.

    I look at my life and I see how different it is from the life of most other women my age (I am now 41). I have only one friend and I feel very lucky because we will probably never stop talking to each other. I can openly talk to him literally about everything.

    I can’t openly talk to most people about my life because there are things I have to hide (like my psychotic episode) and because I don’t want to be pitied. I don’t want anyone to pity me because I don’t have a partner or a successful career.

    I am not saying that it all somehow makes me “disabled” in an objective sense. But I know what kind of difficulties I have encountered and I know how hard I have had to struggle to experience even very basic things (the first romantic kiss etc.).

    I know that I could think of myself as “autistic” (I do have some traits associated with autism), but this label does not really describe me. In fact, there are many autistic people who have never had such social difficulties.

    I once said in an online group for autistic women that I am wondering how they have been able to find their partners (the vast majority of them had male or female partners). No one responded and I guess that others were surprised by my question and did not know what to say…

    Let me make it clear that I don’t feel unhappy because of not having a partner – I am simply sometimes wondering why (as it seems) plenty of people did not find it difficult to find a partner or to make friends.

    You may have experienced similar (or different, but no less serious) difficulties yourself. I hope that even if your experiences were much more more painful than mine, you have also been able to fully accept yourself and your life.

    I do sometimes feel very bitter, especially when I think about people who did not really appreciate me, though I was truly doing my best (and maybe simply trying “too hard”!). But I accept these feelings of bitterness and I am glad that I no longer talk to these people…

    Jesse, all these things you say about me are so kind and heart-warming. If more people were like you, this world would be a much better place for everyone, not only those who feel “different”! Some people seem so cold and self-centered, but they somehow tend to think that they are “more normal” than those who find it easy to show warmth to others… This speaks volumes about the world we live in!

    Yes, I will keep doing my best, and I would add that my experiences have made me stronger, more resilient and happier! Yes, I am much happier now than I was in my 20s… I worry much less about what other people think about me and it is very liberating.

  • Jesse James, I don’t think that anyone here is saying that people who are suffering should label themselves as “disabled” or “dysfunctional”. But “disability” can be defined in various ways. It does not have to mean anything negative, it does not mean that the “disabled” person is inferior to other people.

    In my own case, I certainly don’t feel that there is something wrong with my brain. But I know that since my childhood I have had difficulties which most people don’t experience. For some reason many people did not accept me, even when I was trying hard to “be like others” (actually I was sometimes very painfully rejected when I was trying hard to “fit in”).

    I feel that lots of people somehow sense that there is something “different” about me and don’t like it. I feel deeply grateful whenever I feel truly accepted by a person. I had a psychotic episode when I felt rejected by someone I saw as my only friend.

    Because of my social difficulties I am very isolated and I have not had many experiences which most people take for granted. In today’s world social skills have become extremely important; life can be very hard for those who are perceived as “weird”.

    I know that my being very isolated in my workplace was the main reason why I lost my job. If a colleague talked to me, I felt grateful. I am now unable to earn a living, though I am a highly educated person and an excellent translator.

    To me, “disabled” does not mean that I see myself as inferior to other people. I simply see that there are things I can’t do or don’t have because I am different, because my development has been different. Even though I have gained in confidence in recent years, there are things I simply can’t achieve – things which seem natural to most people.

    2 years ago I joined my country’s association for psychological and social approaches to psychosis because I was hoping that I would be valued there as a sociologist with personal experience of psychosis. Sadly, I was very disappointed – no one was interested in me, my knowledge and my experiences. I was probably dismissed as a “patient” with nothing important to say, though I don’t see myself as mentally ill and don’t take psychiatric drugs…

    This is how many “professionals” treat people with experience of psychosis – they often seem to think that these people have nothing important to say (a psychiatrist kept interrupting me whenever I tried to say something). Yes, people with experience of psychosis are often dismissed or even ignored by “professionals”. Or they are patronized…

    I believe that I have the right to financial assistance or to supported employment. I am a person who has accumulated many experiences of being rejected since her childhood, I am a person who is very isolated. I don’t find the term “disabled” offensive in any sense.

    I know that I will probably always be poor and I don’t have a problem with it. I simply want to feel safe, to know that I will never risk being hungry or homeless. I think that plenty of people don’t even realize what it means to be a poor, socially isolated person with experience of psychosis who does not get any kind of disability payment… (And I am one of the lucky ones because I have a few loving family members and because I feel quite happy despite my situation).

  • Boans, it is thought-provoking that you felt “like you had woken as a black man” when you became a psychiatric “outpatient”. You say that “all that pent up hatred by police for blacks” was “vented on the white man who has had their right to complain taken from them via a label applied by a community nurse”.

    It seems that in America and many other countries white people tend to take it for granted that they have rights of which Black people are routinely deprived. It is striking that many white people feel that they have realized what oppression means only when they become psychiatric patients… However, there are also other kinds of oppression which affect people of all skin colours, including poverty, domestic violence and childhood abuse.

  • Thank you so much for your very moving, insightful and courageous article! You have bravely confronted your own family’s history, which must have been very difficult and painful.

    It is quite shocking that some publishers and literary agents believe that there is “no market for books about Africa and Africans”. The history of colonial Rhodesia, including the racist segregation in this colony, is much too little known and often seems forgotten. I have just ordered your memoir and I am looking forward to reading it.

  • Bill, yes, of course I have considered it. I have been working as a translator and I have even translated two books since losing my job.

    However, this profession is extremely competitive and very badly paid, so I have been unable to earn a living in this way. One’s social capital (whether or not one has friends in publishing houses etc.) plays a huge role.

    And most of the translators who are much more successful than me work extremely hard, which is definitely not good for their health. This workaholic lifestyle is seen as normal in the profession.

    As I explained in one of my comments, in order to become e.g. a psychotherapist I would first have to pay for a very expensive course. I don’t currently see any other opportunities for self-employment in my case. My love of writing, reading, research and foreign languages is sadly not enough to earn a living!

    Let me add that I am quite an introverted and contemplative person, which makes things even more complicated…

  • Chuck writes in his article: “In addition, the disability system can create a strong social and financial dependency that can conflict with the goal of recovery. So, those who use the system can pay a very high price.”

    This is how many people think – that disability payments create dependency. What these people don’t realize is that it can be very difficult to stand on one’s own feet, especially if one comes from a poor background.

    It is easy to say that disability payments create dependency if one is a psychologist in private practice. I wanted to become a psychotherapist, but I can’t afford to pay for a psychotherapy course. They are simply much too expensive.

    If a person does not have any income and can’t find or keep a job, the situation is very dangerous to this person’s health, both mental and physical. It is much worse than getting a disability payment. Being afraid of hunger and homelessness can never be good for people. I have experienced unemployment and I know how an unemployed person feels.

    I think that the author also forgets that poverty deepens people’s social isolation. As an example, I can’t afford to go to restaurants with other people. I go to a hairdresser as rarely as possible. I don’t buy new clothes. I can’t travel to another city or country whenever I feel like it. I can’t openly tell people that I am simply too poor to do things they take for granted.

  • Ron, you make an excellent point: “…if we lived in a society where everyone got their basic needs met whether or not they worked jobs etc., then we wouldn’t need to be trying to figure out who is disabled and who isn’t.”

    You mention people who “are in a mental state that is stopping them from being employable”. There is nothing wrong with my mental state, but I don’t fit in. I have always been an outsider and a loner, since my childhood.

    I had very serious social difficulties for most of my life. There were periods in my life where I had literally no friends – not even one person. I have gained in confidence in recent years, but there is now a gulf between me and most people, a gulf I can’t overcome (in terms of social capital etc.).

    I don’t know if I am “employable”. And the very term “employable” is highly problematic. Of course, in every society there are some hard and extremely stressful jobs which few people are ready to do, but if a person accepts such a job only out of necessity, is it a good thing? If the job mentally and/or physically destroys the person, will it be a good thing? And would it be fair to expect a highly educated person to work at a job largely below their education level only because the person is unable to find any other job?

  • Many thanks for your comments, Tina. You say that some of us “do need and want supports, services, and reasonable accommodations in relation to the distress/unusual perceptions we experience whether once or many times or all the time.” I agree with you and I would add that some of us need and want supports etc. because they find it very hard to function in a capitalist society, even if they no longer experience distress or unusual perceptions.

    Like you, I have been “locked up”. But even though most people don’t know about it and don’t discriminate against me for this reason, I sometimes feel painfully different from others and I have felt that way since my childhood. I have embraced my difference, but it creates very real problems in my life.

  • In the case of psychiatric survivors or neurodivergent people one of the “enabling accommodations” could be simply financial assistance. It can be very difficult to find and keep a job if one is e.g. prone to psychosis.

    I personally have had social difficulties since my childhood. I have simply not had the same type of development as most people. I find it difficult to make friends; I have had very little experience with relationships; I tend to feel like an outsider in groups.

    I have had only one steady job, despite a very high level of education. I don’t have a competitive mindset, I am not good at promoting myself. I have never wanted a career, I enjoy a peaceful life and feeling free.

    I am not a lazy person, but I have not been able to find a job where I would be able to use my knowledge, talents and skills. I am now trying to gain teaching qualifications, but I don’t know if I will be able to work as a teacher (I am afraid of being rejected by other people, of being mocked behind my back etc.).

    I don’t identify with any psychiatric label (though I have experienced psychosis), but I think that some people find it really hard to survive in a capitalist world – and that I am one of them. I don’t know if I would be currently able to find a job (ANY job) in my country (I did try to find a job in the past – unsuccessfully). I have been able to pay for my teaching course only thanks to my mum’s help.

    I was getting a disability payment because of “schizophrenia” for a year – it is a ridiculously small sum in my country, but at least I had an income and I had some rights as a disabled person (reduced price bus tickets etc.). I was never ashamed of using my disabled person ID card.

    I am trying to get a disability payment again and I do see myself as disabled. Not because I see myself as mentally ill/disordered (I don’t), but because I am simply unable to earn a living, and because I know that it is linked to all the things which make me different from most people.

  • Steve, yes, I have also read that smoking lowers the level of neuroleptics in the blood. I am sure that this could partially explain why so many patients in mental hospitals and so many people labelled with “schizophrenia” are heavy smokers.

    I agree with you that the psychiatric industry does not take it into account – as you said, it is generally trying to blame the shortened lifespans on people’s “lifestyle”.

    At the same time, I don’t think that we can safely conclude that many people diagnosed with severe mental illness smoke because of neuroleptics. Poor people are more likely to smoke. Smoking is one of the few pleasures available to the poor, and it is also more difficult to get help in quitting smoking when one is poor.

    In one of my comments I mentioned a man who was diagnosed with “schizophrenia” and a heavy smoker and who died from lung cancer. One of the sisters of this man – who did not have any psychiatric diagnosis – was a heavy smoker, too, and also died from lung cancer.

    The thing they both had in common was poverty and maybe also childhood trauma (they lost their parents at quite a young age).

    If we say that neuroleptics cause people labelled with severe mental illness to smoke, this will be too simplistic. Neuroleptics definitely play a role here, but there also other factors, including poverty and stress. There are people on neuroleptics who never start smoking.

    Of course various lifestyle factors shortening the lives of people labelled with severe mental illness are closely linked to their situation. People who are poor and stigmatized are much more likely to do things which harm their health, including drinking, being physically inactive, eating junk food etc.

  • Rebel, as to the “Torrey Argument”, I feel that you have misunderstood me. I did not say that the lives of patients diagnosed with schizophrenia are shortened only or mainly because of smoking.

    I am not defending psychiatric drugs. I was forced to take neuroleptics in the past (in a hospital). I refuse to take any psychiatric drugs, I know that they are harmful.

    However, it is not true that the lives of patients diagnosed with schizophrenia are shortened only because of neuroleptics. There are many other negative factors in the lives of most of these patients, including poverty and social isolation. Many of them are smokers and some of them die because of lung cancer which is usually caused by tobacco smoke.

    A relative of my mother’s husband was diagnosed with schizophrenia, but he was also a heavy smoker. He died from lung cancer. He kept smoking even when he had terminal lung cancer. We can’t say that his illness and death was caused by neuroleptics.

    Let us not forget either that many patients diagnosed with schizophrenia don’t take neuroleptics or take them only occasionally. Many psychiatrists are complaining about it in their books and articles!

    The shortened life expectancy of psychiatric patients does not have a single cause. We can’t blame everything on psychiatric drugs and say that all the other negative factors are of no importance.

  • Rebel, I also think that there is something wrong about this discussion, though for different reasons. The idea that psychiatric patients now have it worse than in Nazi times – or at least just as bad as in Nazi times – is based on emotions, not on facts, and disrespectful to the victims of the Nazi extermination of psychiatric patients.

    As I have said many times here, the Nazi extermination of psychiatric patients was planned. There are facts and documents which prove that these patients were murdered. We are not talking here about conjectures, or about lives which were shortened because of the long-term effects of toxic drugs, or about people who took their own life while using a psychiatric drug. We are talking about people who were literally murdered.

    Most people know very little about the Nazi extermination of psychiatric patients. They were not murdered in death camps or in concentration camps. Most of them were actually murdered in asylums. Psychiatrists and psychiatric nurses were actively participating in these crimes.

    There is absolutely no evidence that today’s psychiatrists want to kill their patients. Psychiatric drugs have many harmful effects, but they are not prescribed in order to kill or to harm the patient. They are prescribed because of the dogmas of biopsychiatry, because of the power of Big Pharma, because it is much easier to give a person psychiatric drugs than to provide free psychotherapy and to improve the person’s life, and finally because society is simply scared of the “mentally ill” because of the prevailing stereotypes.

    As I have said in this thread, many patients want to take psychiatric drugs. This is very important – in very many cases these drugs, especially antidepressants, are NOT forced on unwilling people. We can say that most people don’t know enough about the long-term effects of psychiatric drugs, but we can’t say that people who are willingly taking psychiatric drugs are passive victims tortured by evil psychiatrists.

    As I said earlier, some of the people who are using psychiatric drugs actually get angry if someone is criticizing these drugs. Of course we can say that they are brainwashed, but we can’t deny the fact that many people want to be prescribed their favourite psychiatric drugs and believe that the drugs are helping them.

  • Someone Else, only some people experience psychosis on psychiatric drugs. Importantly, there are also other drugs which may trigger psychotic symptoms in some people. My psychotic episode actually began when I was using an anti-malaria drug.

    Psychiatric drugs definitely have many harmful effects – I am not defending these drugs. But doctors don’t prescribe them in order to kill their patients. In Nazi Germany psychiatrists were literally sending patients to gas chambers.

    Let’s not forget that only some psychiatric patients are forcibly treated with psychiatric drugs. Countless other patients take them willingly. Some people even get angry if someone says something critical about the psychiatric drugs they are using!

    Psychiatrists are often much too dismissive about the negative effects of psychiatric drugs, but it is not the same as exterminating people. Today’s psychiatrists don’t intend to kill their patients – in fact, a patient who is alive for many decades and dutifully taking his/her medication(s) is much more useful to psychiatrists and to Big Pharma than a patient who is dead!

    Prescribing drugs with harmful effects is not the same as intentionally killing people. There is a crucial difference between a psychiatrist who is convinced that his/her patient needs a psychiatric drug and a psychiatrist who thinks that his/her patient should be killed in order to reduce public expenditure.

    Psychiatric patients diagnosed with schizophrenia tend to have shorter lives than the rest of the population, but neuroleptics are not the only cause. As an example, some of these patients die from lung cancer caused by smoking (unfortunately, for some reason patients diagnosed with severe mental illness are very often heavy smokers).

  • Daiphanous Weeping, there are many people who have experienced psychosis, but who don’t believe that they have schizophrenia. Psychosis does not have to be lifelong.

    I have personally experienced a genuine psychosis (I had “voices” and delusions), but I don’t believe that I have schizophrenia. In fact, I have never had a so-called relapse despite not being on neuroleptics.

    This article is not implying that psychosis is merely “unhappiness from life’s ordeals”.

  • Dear Fiachra, thank you for your reply. I want to make it clear that I know very well what akathisia is – I suffered from horrible akathisia myself when I was on neuroleptics.

    I was not frightened or distressed by your comment. I simply think that we can’t compare planned extermination to being prescribed a drug associated with suicidal thoughts and attempts in some people.

    I don’t think that psychiatrists who prescribe akathisia-inducing drugs want their patients to take their own lives. In fact, plenty of patients are prescribed akathisia-inducing drugs, but only some of them attempt suicide or die by suicide.

    To me, akathisia was horrible, but it was definitely not the worst thing in my case. The worst thing was the feeling of hopelessness caused by my “schizophrenia” diagnosis. If I had attempted suicide while on neuroleptics, a researcher might have wrongly concluded that the drug-induced akathisia was the cause of my suicide attempt.

    You say that “about 4 out of 10 of the people on these drugs will attempt suicide.” I don’t know where this number comes from (it does not come from the “Depot Antipsychotic Drugs Revisited” paper).

    This number seems much too high. Anyway, the fact that a person attempts suicide while using an akathisia-inducing drug does not prove that the akathisia is the *only* cause of such a suicide attempt, or that akathisia is *always* or *usually* linked with suicidal thoughts and suicide attempts.

  • Dear Fiachra, I know that you feel that Fluphenazine caused your suicide attempts. I also understand why you describe your psychiatrists as psychopathic.

    However, Nazi psychiatrists aimed to literally exterminate psychiatric patients. Nazi psychiatrists saw the lives of these patients as worthless, “unworthy of life”.

    These people were murdered in cold blood, on a mass scale, just like Jews. This was a planned and well-organized extermination programme. Psychiatrists and psychiatric nurses were actually personally participating in this much too little known programme.

    Psychiatrists who prescribe Fluphenazine are not doing it in order to exterminate their patients. Only some people take their own life while using Fluphenazine. And it is impossible to say that Fluphenazine is the cause of such suicides. There are no data which would allow us to make this claim.

    Even if it were possible to prove that Fluphenazine (or another psychiatric drug) is the only cause of some suicides, it would be impossible to compare it to the planned extermination of psychiatric patients by the Nazis.

    You say that you believe that “the Fluphenazine killings would also have been well in excess of 137,500 Deaths.”

    First of all, suicides associated with Fluphenazine use can’t be called killings. There is a proven link between alcohol use and suicide, but somehow no one calls suicides associated with alcohol use “alcohol killings”.

    Secondly, we simply can’t compare planned extermination with suicides associated with the use of a psychiatric drug. Suicide is always a person’s decision. It is not the same as being murdered in cold blood.

    If we put on the same level the suicides of people who were taking psychiatric drugs and the deaths of people murdered by the Nazis, we will disrespect the memory of the victims of the Nazi extermination programme.

  • The Nazis murdered between 100 000–137 500 of patients diagnosed with schizophrenia between 1934 and 1945, as estimated in this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2800142/. Many of these people were murdered in gas chambers. The number of the victims must be much higher than the authors believe if we take into account all the countries and territories under the Nazi occupation.

    The article “Suicide associated with akathisia and depot fluphenazine treatment” does not say how many suicides may be associated to fluphenazine treatment. And even if we had such statistics, I certainly don’t think that we should compare deaths by suicide associated with fluphenazine to the deaths of psychiatric patients exterminated by the Nazis. The latter had absolutely no way of escaping their horrible death.

  • This is a deeply moving story to which I can definitely relate, though I have not experienced such unimaginable horrors as the forced electroconvulsive “treatment” described by the author.

    I, too, felt very isolated as a child and rejected by my peers who sometimes overtly bullied me. In later years I have accumulated many similar experiences, including in my student years and in my former workplace – in some periods of my life I was actually surprised when someone showed me friendliness. Only in recent years I have gradually come to terms with the fact that many people reject(ed) me only because I am/was not like them.

    I used to struggle (and still sometimes struggle) with deep and painful insecurities, certainly largely caused by my experiences of social rejection. During my only psychotic episode, almost 10 years ago, I heard voices telling me, among others, that no one wanted me, that I was ugly, that my teeth looked horrible and that no man would ever kiss me for this reason, that I was boring and spent my days reading the newspaper.

    My psychotic episode was triggered by an emotionally painful (maybe even traumatic) experience, but I am sure that many of the things the voices were saying reflected the pain and fear I often felt since my childhood because of all the accumulated experiences of being isolated, rejected and bullied. The fear of mocking and cruel things someone might say to me or behind my back; of others’ jeering laughter and demeaning labels and nicknames.

    I have greatly gained in confidence in recent years, but fear still sometimes overwhelms me when I think that someone or even a group of people might start cruelly deriding me, e.g. because of an unpopular opinion on some issue.

    I am sure that many people’s cruelty to those who are “different”, those who are stigmatized and those who are seen as losers or failures is one of the main causes of emotional distress and “mental illness”, including psychosis.

  • Gina, hope is possible also for older people who are psychiatric survivors. One of these people was Chrys Muirhead who unfortunately recently died from cancer. She felt that life had been unfair to her, but she loved life at the same time. http://www.madinamerica.com/2021/10/rip-scottish-psychiatric-survivor-activist-chrys-muirhead/

    I am very sorry to hear that this doctor/clinic will not take your welfare benefit card. I think that there must be some specialists who accept patients like you, but I don’t know enough about the US healthcare system to give you any useful advice. Maybe someone else will…

  • I understand what you mean when you say that it is difficult for you to get advice from strangers. But let me just say this: maybe you would be able to find a job where no one would ever yell at you.

    Some people actually do prefer worse paid jobs to well-paid, but more stressful ones. Academic jobs are among the most stressful jobs and some people choose to leave academia.

    I know that social security disability is not guaranteed, but I think that there would be no harm in applying for it…

  • Gina, you really don’t have to explain to employers why you no longer work at the college. You can simply say that you wanted to do something else, that the college job was too stressful or unsatisfying.

    It is not easy to get a publishing contract for a memoir. And even if you do get it, you have to find some way of surviving before you get it.

    If I were you, I would also apply for Social Security because of arthritis etc. – you have the right to Social Security, you don’t have to work.

  • Gina, thank you once again for your reply to my comment. I am happy that you appreciated it!

    Yes, fortunately I have been able to heal to a very large extent. But I find it sad that there are experiences (including my stay in a mental hospital) I feel forced to hide, though I have not done anything wrong.

    However, a bigger problem is my economic situation. Without my mum’s financial help my life would have been very stressful because of the very limited job opportunities for women like me, women who don’t fit in and don’t want to fit in the capitalist world of ruthless competitiveness, unquestioning workaholism, constant self-marketing etc.

    But I actually feel quite happy – my happiness comes from the inside and from my connections with people I trust (there are not many of them…).

    I can tell you that the experience of being labelled as “mentally ill” does not rule out happiness, though in order to feel happy one often has to reject many mainstream beliefs, including the idea that one must have a successful career and plenty of friends to be happy.

  • Gina, I saw your reply to my comment in my emails, but I don’t see it here. You are very welcome!

    You are so right in saying that your depression is caused by real blows to your life. People can be extremely distressed because of traumatic experiences, poverty, isolation etc. Mainstream psychiatry tends to overlook these very real causes of people’s emotional distress.

  • Gina, please don’t leave this website. It is a safe and friendly space, no one is allowed to bully anyone here.

    I experienced “psychiatric incarceration” in 2012, for more than a month. Like you, I used to work as an academic and I have experienced unemployment. I have not had a steady job since 2018 (when I lost my university job). Like you, I don’t have children. I feel that my society is callously indifferent to the situation of people who “don’t fit in” for some reason.

    I really hope that you will soon feel better. Please stay with us and feel free to write here.

  • @dmschlom, I am not in the least surprised by what you say about the “unspoken rule”. I think that it is corporate welfare as you say, though maybe it is also widely assumed that people who are prescribed neuroleptics are much more disabled enough” than those who are prescribed e.g. only antidepressants.

    I am not surprised either by the fact that gay men with HIV get so little money compared to the costs of HIV drugs. As you said (also in your earlier comment), the establishment serves the interests of corporations. The level of hypocrisy can be staggering (corporate feminism which portrays itself as the only feminism is a great example).

  • 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.