Showing 37 of 37 comments.
I totally agree with you!
And – very importantly – this new drug can also cause tardive dyskinesia. The prescribing information leaflet even states after mentioning TD: “In patients who do require chronic treatment, use the lowest dose and the shortest duration of treatment producing a satisfactory clinical response. Periodically reassess the need for continued treatment.” (page 2 here: http//www.intracellulartherapies.com/docs/caplyta_pi.pdf).
But we all know that people with a diagnosis of schizophrenia are usually put on neuroleptics for life… I came off a neuroleptic about a month after my first and only psychotic episode in 2012 (I was diagnosed with “schizophrenia” after this episode). Coming off the neuroleptic has been one of the best decisions in my life. I have never had a psychotic episode again despite my diagnosis…
You are so right, Steve! “All volunteers with schizophrenia were on antipsychotic medication (mean [SEM] chlorpromazine-equivalent dose = 443.5 [89.6] mg/d” http://www.nature.com/articles/s41467-019-14122-0 .
Kindredspirit, unfortunately the main problem with ”antipsychotics” is that many people are literally forced to take them. I did not beg to try something – like many others, I was forced to take neuroleptics when I was involuntarily committed to a mental hospital. This is one of the most barbaric aspects of psychiatry!
Dear Vitas, thank you so much for sharing your powerful, deeply moving and excellently written story. I can relate so much to your experiences because my only psychotic episode, 7 years ago, was clearly caused by a relationship breakdown.
I started “hearing voices” when I felt rejected by a man I loved. I was involuntarily committed to a mental hospital and put on neuroleptics – with horrible side effects, especially in the case of Trilafon (perphenazine) – and I experienced the dehumanizing atmosphere of a locked ward. I did not receive any psychotherapy at the hospital where I spent more than a month – I was kept there even when I no longer had any symptoms.
Fortunately I decided to come off neuroleptics a month and a half after being released from the hospital and I have never used them again. I have never had another psychotic episode, though psychiatrists claimed that the one I had experienced was caused by a chemical imbalance in my brain… I wish you all the best and thank you for being so open about your experiences.
Thank you for explaining your situation, maradel. Fortunately I know for sure that doctors don’t know about my psychiatric diagnosis. And even if a doctor finds out about it one day, I am not worried because after my psychotic episode I had absolutely no contact with the psychiatric system for more than 6 years – doctors would probably assume that I must have been misdiagnosed or that I am a case of full recovery from schizophrenia.
No one knew about my diagnosis in my former workplace – I did not tell even my boss about it. Wherever I go, no one knows that I was once an involuntary mental patient.
In my own experience, some doctors have been clearly impressed by my education level and outspokenness. The head doctor at the mental hospital even lent me a book on the history of psychiatry and was very respectful towards me. Another doctor (a non-psychiatrist) not only likes me and respects me, but has once even shared with me an article from a medical journal! So fortunately there are doctors who don’t feel threatened by women with doctorates…
At the same time, I have to admit that I am trying to avoid conflicts with doctors unless I strongly feel that I have to stand up for myself. As to compliance, in my opinion a certain level of compliance is very wise in psychiatric hospitals. Thanks to my compliance I was not put into restraints and I did not undergo forced injections. Thanks to my compliance I was not really traumatized by my stay in the mental hospital. Sometimes it’s better to be compliant – it can even save our life…
Great comment! So good to know that you got out of the system of psychiatric drugging!
I understand, Rachel, but still they have no right to yell at you – it increases your stress, and I don’t think that it will make you stop… Maybe you could try to replace scratching by vigorously massaging your scalp with your fingers? But such habits are not unusual in any sense – my mum used to bite her nails until they bled when she was a young girl…
I think that your family members don’t realize that they are hurting you emotionally. Maybe they have not experienced healthy, non-abusive love themselves!
Rachel, how can your relatives yell at you? They are behaving in a very abusive way and they should stop thinking that your “illness” gives them the right to abuse you. This is emotional abuse of the worst kind! I would stop visiting people who are so abusive!
maradel, as someone diagnosed with paranoid schizophrenia I definitely don’t think that the diagnosis in itself is worse than the damage caused by psychiatric drugs. I got my diagnosis more than 6 years ago, but I am able to lead a normal, happy and free life because I was on neuroleptics only for a short time.
Very few people know about my diagnosis, so it is not really stigmatizing to me. I am very glad that I never told anybody in my former workplace that I had been diagnosed with schizophrenia. Keeping this secret has been much easier to me than facing the consequences of “coming out”…
If your disability results from failed surgeries, why did you have to reveal your psychiatric diagnoses when you applied for disability? This is something I feared myself in the past – the possibility of being treated worse than other patients because of my psychiatric diagnosis. I am so sorry about the way you are now treated by doctors! But doesn’t their attitude change when they find out that you have two doctorates? (I am sure that my own PhD and my academic job made doctors and nurses treat me better when I was at a psychiatric hospital).
I think that migrating to another country is a great idea in your situation – wonderful that it’s possible for you! And you are right: fear of those who are different is surely one of the main reasons why “mentally ill” people are treated so horribly!
yeah_i_survived: Like you, I am pessimistic about Hollywood. However, “55 Steps” is not a Hollywood movie – it is a German-Belgian coproduction and it will be released only in select cinemas in the US. I really don’t think that such a film could have been made in today’s Hollywood!
As to actors, let’s not forget that Kirk Douglas wanted to turn “One Flew Over the Cuckoo’s Nest” into a film for years – and his son Michael co-produced it. So yes, there are actors who genuinely care about important causes, including the cause of psychiatric patients and survivors…
A very good point!
You are so right, Rachel! I am really fed up with the way “mentally ill” people are still portrayed in movies. I have even recently seen a seemingly well-intentioned indie movie where a woman who heard voices was a scary character who had killed her own son…
I agree, Steve, and thanks for the facts on John Nash. I was also able to “stay under the radar” – I stopped any involvement with psychiatrists after coming off neuroleptics in 2012 and since that time I have always been able to stay balanced, no matter what happens in my life. I think that those who want to suppress the truth about Nash are also acting on the assumption that the “mentally ill” don’t know what is good for them and have to be protected from any “dangerous” knowledge…
Steve McCrea, I fully agree about Jesus 🙂 I am sure that many psychiatrists would diagnose him with severe mental illness…
I agree with you: it was very impressive that Eleanor was able to live on her own, talk to lawyers, and generally live an independent life. And – very importantly – despite her traumatic experiences and suffering the film portrayed her as a happy, cheerful person who “every day found something in her life to enjoy, something to be grateful for”. In this sense the film carries a very uplifting message. I may have been too harsh in my earlier comments, though I continue to feel that this important and heart-warming film has some major weaknesses. I hope that one day many films will make it clear that the boundary between “mentally ill” and “normal” people is wholly artificial and incredibly harmful, and that neuroleptics are always toxic and debilitating and should never be used for a long time (if at all). Nowadays one really does not need a lot of money to make a film without stars or a documentary, and hopefully we will see many independent films challenging mainstream views on mental health issues.
Rachel, you believe that continual patronizing and put downs can cause childish behaviour. But was the real Eleanor childish? We don’t know what she was really like and if she would be happy with the way she was portrayed in the film…
Frank, I agree with you. I know that John Nash was not happy with the erasure of this crucial fact in the film about him. Mainstream elites seem to be scared at the prospect that “schizophrenics” may be encouraged to stop taking “their meds” by a film! Fortunately many people know that these “meds” are poison…
Frank and danzig666: I fully agree with both of you!
Rachel777, you are entirely right! And Eleanor Riese allegedly developed her “schizophrenia” after suffering childhood meningitis http://law.justia.com/cases/california/court-of-appeal/3d/209/1303.html . She even says near the end of the film “That was when they put the shunt in my head… to drain the water off my brain after I had spinal meningitis. Yeah. Before that, I wasn’t retarded, and nobody called me mentally ill. I was just like everybody else.” But this does not make her lawyer conclude that maybe Eleanor has never had any mental illness!
Concerned Carer: I was also probably hoping for too much! Obviously it is great that such a film was made. I think, however, that one could make a much better, much more powerful, much less patronizing and much less predictable film about Eleanor Riese. Powerful, uncompromising and non-patronizing films about “mentally ill” people are being made – the Romanian film “Beyond the Hills” (2012) by Cristian Mungiu is a great example. Unfortunately the people behind “55 steps” were much too Holywoodian in their approach and did not question many of the widespread assumptions about mental health issues and mental patients.
Helena Bonham Carter surely put a lot of effort into playing her character. The problem is, however, that she has clearly her assumptions about “schizophrenics” – that they are people who don’t look, don’t behave and don’t talk like “normal” people; who can say something considered rude out of the blue etc., who have their obsessions etc. This myth perpetuates prejudice towards psychiatric survivors, but the truth is very different. I have a close friend who was diagnosed with schizophrenia many years ago and who is not using neuroleptics; I was literally shocked when he told me about his diagnosis – it was impossible to guess from his behaviour and speech that he had been a mental patient (like me). By the way, he told me that he knows some people who have been clearly damaged by neuroleptics.
I would say that Helena Bonham Carter was trying too hard to transform herself into a “schizophrenic”; but there is no need for any transformation, unless we assume that a “schizophrenic” is somehow deeply different from “normal” people. I feel that Bonham Carter (unsurprisingly) wanted to show the range of her acting skills, her capacity for metamorphosis, but it came at a heavy cost: it was impossible for me to identify with Bonham Carter’s Eleanor, and the character did not make me think of any real people diagnosed with schizophrenia, but of Dustin Hoffman’s character in “Rain Man” or Sally Hawkins’s character in “Maudie” – two other excellent examples of actors doing their best to metamorphose themselves into an “odd” person.
Isn’t it striking that the reviewer from “Hollywood Reporter” http://www.hollywoodreporter.com/review/55-steps-film-review-tiff-2017-1036523 wrote: “The actress certainly dresses, speaks and moves as if she were in one of her former romantic and professional partner Tim Burton’s grand guignol Gothics. And her snarly demeanor and exaggerated body movements are so shamelessly self-indulgent that they demean the very person the movie aims to honor”?
I agree with Sera Davidow that it is an important film. However, I found it deeply disappointing, and in my opinion it does not truly challenge the status quo. The people who made the film are not against neuroleptics: Helen Bonham Carter believes that Eleanor Riese simply needed “the right amount of medication” (http://www.huffingtonpost.co.uk/entry/helena-bonham-carter-55-steps-interview-eleanor-riese_uk_5bc4f660e4b0fed45beb93d7). The film does not show or suggest that Eleanor Riese came off or wanted to come off neuroleptics! Eleanor’s diagnosis – paranoid schizophrenia – is not even once questioned in the film.
I found Eleanor’s portrayal very patronizing and cringeworthy. She is depicted as childish and even arrested in her psychological development – an exuberant little girl in a woman’s body – obsessed by her rosaries and completely asexual. The film offensively implies that mental patients are “children in adults’ bodies” and intellectually disabled. It will surely not convince “normal” people that mental patients are humans just like them!
Interestingly, the film never asks the question WHY Eleanor became psychotic and what made her completely suppress her sexuality. I know very little about the real Eleanor Riese, but she may have been a victim of sexual abuse or some other trauma before she became psychotic – the film never even suggests such a possibility because it chooses to portray “schizophrenia” as a mysterious brain disease…
I was also annoyed by the film’s ending. Eleanor Riese was killed by neuroleptics at the age of only 47. And because of neuroleptics she had to use a catheter to urinate for many years – I once had a catheter inserted at a hospital and I know how it hurts… But the authors of the film want us to feel good when the lawyer receives the award after Eleanor’s death – they want us to believe that this is actually a story with a happy ending!
It’s very sad that (in spite of everything she has found out) Helena Bonham-Carter says that Eleanor Riese started feeling better when she came “onto the right amount [of medication]“… So she is not against neuroleptics – she is merely against over-drugging. It is true that the film does not suggest in any way that Eleanor came off neuroleptics. And I guess that the other people behind the film have the same approach as Bonham-Carter… You write that the screenwriter, Mark Bruce Rosin, explained that the film couldn’t fight all the issues, but is there any proof that he knows that there is no “right amount“ of a neuroleptic? And can one find somewhere online Rosin’s explanations on the way neuroleptics were portrayed in the film?
yeah_I_survived: These “Christians” don’t know their Bible – Jesus healed a man who would probably be a mental patient today! The man lived in the tombs and cut himself with stones… One can find the story in Mark 5:1-20 and Luke 8:26-39.
Just an update on my story: I have never had a relapse of psychosis, though I have not been taking any psychiatric drugs for more than 4 years and though I have had some difficult experiences in recent years. I would like to emphasize that I have never had psychotherapy – so it’s perfectly possible to recover even after a full-blown psychotic episode without recourse to psychotherapy.
As to my friend (we later renewed e-mail contact), he has never said anything on my psychotic episode, but this does not surprise me: it is very difficult to discuss such taboo experiences.
In my case psychosis developed before I was put on psychiatric drugs and was clearly linked to a very painful personal experience. I had a psychotic episode in the summer of 2012 and I have never had a “relapse” (I have not been on any psychiatric drugs since mid-November 2013) so my psychosis was not caused by a long-term mental illness. My story proves that some people can become psychotic under the influence of trauma – and not because of a “psychiatric drug cocktail” served by cynical psychiatrists – and later make a full recovery. I think that such cases would be much more frequent if many people had not accepted the idea that mental illness is incurable and has nothing in common with a person’s experiences …
Thank you very much for your reply and your kind words, Steve ! Of course, I fully agree with you: there is such arrogance in some people’s belief that they “know” what it means to hear voices or to have delusions, even though they have never experienced it themselves. So many psychiatrists and other “experts” never really listen to the “mentally ill” and assume that they are all the same – strange and deeply miserable individuals with malfunctioning brains who have to be on neuroleptics “for their own good” …
A correction: my episode was almost 4 years ago, in August and September 2012. I was diagnosed with schizophrenia at that time, but fortunately I was rebellious enough to reject this life-shattering diagnosis and to come off neuroleptics. As I said earlier, I have never suffered another “psychotic” episode.
The voices did not return even when my father was dying from brain cancer at the end of last year. I am so happy that he knew until the end that his daughter was a happy and peaceful young woman who was wise enough not to believe what psychiatrists had told her and resilient enough to emerge as a stronger, more empathetic and more loving human being from a psychiatric hospital where she had been involuntarily committed …
The idea that people who hear voices have a “defect” which makes them unable to recognize their voice as their own is totally unconvincing to me. First of all, how to explain the fact that some people – like me – have had only one episode of voice hearing in their life, even though they are not using neuroleptics ? I had such an episode for more than a month almost 3 years ago – if I have a “defect” in my brain, why do I no longer hear voices ?
Secondly, I sometimes heard more than one voice (Eliezer Sternberg and Louis Gould would be unable to explain it) and the voice I usually heard sounded like the voice of a real person – someone whose behaviour contributed to my episode of voice hearing. The voices were also often saying very shocking or even terrifying things, things which were source of deep torment and most probably came from the depths of my unconscious. I was certainly not merely “talking to myself” and being unaware of it because of a “defect” in my brain !
Voice hearing, especially when it is related to painful or even traumatic experiences, is a far more complex phenomenon than Sternberg and Gould believe. Like so many others, Sternberg and Gould want others to believe that people who hear voices have malfunctioning, deficient brains. Like so many others, they do not even mention trauma and other psychological causes of psychotic experiences. They shamelessly perpetuate devastating biopsychiatric myths on “mental illness” and “the mentally ill”.
I could not agree more with what Fred said, “Psychiatry is a main reason more people are still suffering from what could have been temporary distress.” For me, the episode of hearing voices was just temporary distress because I completely rejected the terrifying label imposed on me by psychiatrists and very soon decided to come off neuroleptics – without any help from anyone. Sadly, most people diagnosed with schizophrenia really believe that they are severely mentally ill and trust psychiatrists. The diagnosis literally destroys their lives and self-esteem. It is really a pity that the Inquiry into the “Schizophrenia” Label (http://www.schizophreniainquiry.org/; Philip Thomas, who is a blogger on this website, is a member of its co-ordinating group) has not yet published its report (I was awaiting it impatiently).
Just like Duane, I am very unpleasantly surprised by Dr Berezin’s claim that “once the self and the plays are fractured, they cannot fully be put back together again” and that it is a “tragic feature of schizophrenia”.
I was diagnosed with paranoid schizophrenia in September 2012, after more than a month spent (involuntarily) at a psychiatric hospital. My story has been published on this website. I have not taken any neuroleptics or other psychiatric drugs since 15th November 2012, but the “voices” never returned. And today I am much more peaceful, serene, relaxed and resilient than before my episode of hearing voices. I have overcome various fears I had before that episode. I feel really free.
I still work as a university lecturer – I write articles, I teach students, I present papers at international conferences. No one at work knows about my diagnosis, and therefore no one at work has been trying to make things easier for me and support me because of what I have experienced.
Let me also add that I have had no professional psychological support of any kind. And unlike many women who have returned to health after one or more psychotic episodes, I cannot count on the support of a husband or partner. I just have to be strong and tough, and I feel that it is good for me: if I viewed myself as “the fragile and vulnerable woman with mental health issues” and in need of being constantly supported and reassured by her psychotherapist and by other people, maybe I would never return to health.
Moreover, thanks to the many weeks I spent in very difficult conditions in a public psychiatric hospital in Poland with mostly working-class people, I now feel completely at ease with people from all kinds of backgrounds, including young working-class males who once made me feel shy and tense. We all shared the same experiences and fears in the hospital. I do not look at people in the same way since that time, and I fully understand the dangers of labelling.
There is nothing “tragic” about my experiences. On the contrary, I emerged as a far stronger, more resilient, more open-minded, wiser, and simply more fully human person from this life-changing episode. And I certainly don’t view myself as in some sense “damaged” by this episode and by the stay in the psychiatric hospital.
A correction: in my reply to Marian’s comment I inadvertently copied it and apologize for it.
Marian, I can assure you that hallucinations do exist and can be extremely distressing. I suffered a lot because of such (very vivid) auditory hallucinations for about a month. I was often literally terrified, there were some nights when I was unable to sleep and my behaviour sometimes had highly unpleasant consequences. I am very happy that I no longer hallucinate. At the same time, just like you, I think that there is no such thing as “meaningless madness”.
Sadly, I think, Murray has a lot of experience of being with people who have unusual thoughts. But prejudice, yes, has probably more or less always made it impossible for him to recognize his own prejudice that “delusions”, “hallucinations”, and “psychosis” as in “meaningless madness” actually does exist, for what it is, i.e. no less “delusional” than George Bush’s and Tony Blair’s beliefs about Iraq, or whatever belief he, on the basis of his own prejudice, has decided to be “delusional” in any labeled person.
To me the most disturbing about this talk is that it is given in front of an audience whose main conviction, and Murray can impossibly have been ignorant of the fact, is that whatever the experience, whatever the belief, it’s never a sign of “meaningless madness”, while Murray doesn’t touch on this obvious and decisive difference of belief with one word, but, simply by completely ignoring the different belief of his audience, adamantly insists on his own belief to be the one and only truth. In Murray’s own understanding: too much dopamine, anybody?
I listened to Robin Murray’s lecture with genuine interest and pleasure. Among the things he says, there are things which are completely contrary to the prevailing image of “schizophrenia” and “mental illness”, and I do appreciate it very much.
Let us not forget that plenty of people are still convinced that “schizophrenia” exists and is a horrifying, uncurable, devastating illness. Shortly after my diagnosis of “paranoid schizophrenia”, I was reading this http://health.nytimes.com/health/guides/disease/schizophrenia/symptoms.html and felt a tinge of horror when I came across the words: “Typically, patients develop considerable cognitive dysfunction (disordered thinking) within the first 4 – 5 years of the onset of psychotic symptoms. Some evidence indicates that the physical disease process in schizophrenia is progressive, as with Alzheimer’s and Parkinson’s disease.” This claim appears on the website of one of the most influential newspapers in the world !
Murray emphasizes that there is a continuum between “sanity” and “psychosis”. I live in a country (Poland) where the vast majority of people diagnosed with schizophrenia firmly believe that they are, and will forever be, “mentally ill”, and often feel inferior to “normal” people. Murray’s idea of a continuum may be, therefore, very uplifting to many people.
I was myself committed to a psychiatric hospital and spent there more than a month, but I am shocked by the comparison made between such an experience and slavery. Anyone who believes that such a comparison is justifiable should read (or re-read), for instance, Frederick Douglass’s “Narrative”. I do believe that such a comparison is highly offensive to the memory of enslaved people.
In fact – and I realize that it might seem outrageous to some – in spite of my very critical attitude towards mainstream psychiatry I am now glad that I was committed to a hospital when I was acutely psychotic.
I was then frequently having terrifying auditory hallucinations. They made me often so afraid of my own relatives that at some point I even conceived a plan to travel in secret to some other city, without informing anyone about my whereabouts … I prefer not to even imagine what my family members would have felt if I had realized that plan.
Some of my experiences at the hospital were very distressing (especially the side effects from one of the drugs, the fact that I was unable to go outdoors for a month and the aggressive behaviour of some of the other patients), but – apart from being expected to obediently take drugs – I did not experience any violence or abuse from psychiatrists and other staff at the hospital.
I was able to see my loved ones as often as I wished and talk to the head doctor as often as I wished. I was able to spend most of the day reading and listening to music. I knew that I would spend at the most 3 months at the hospital. I would never, never compare my experiences to those of an enslaved African.
Concerning the issue of tapering off antipsychotic drugs, I think that a lot depends on how long one has been taking the drug and on the drug itself. Based on my own experience, tapering by 25% of current dose does not at all have to be too fast.
I decided to come off Abilify (15 mg daily, in tablet form) after having been taking it for a little more than 2 months. I first reduced the dose to 50 % of the original one and was taking the reduced dose for a week. Then I stopped taking the drug altogether. I did not experience any withdrawal symptoms and have been free from psychiatric drugs for more than 4 months.
My warmest thanks to all of you for your kind words, support and encouragement. I immensely appreciate them, especially since I often feel like a lonely rebel in my country. Some diagnosed people in Poland even react with open hostility when one questions the biopsychiatric approach; some have even accused me of harming others by sharing my experiences and expressing my views !
Let me just add that my friend fully realizes that, in spite of my earlier episode of hallucinations and my diagnosis, I have recovered health and am leading a normal life. It makes me really glad to think that, thanks to my example, he has learnt that “madness” can be a temporary state and does not have to leave a person broken.
Nijinsky, it is heart-warming that the feeling of being abandoned can be overcome if only one is rebellious and determined enough to seek out other people who are not ready to view themselves as incurably mentally ill. I find it very sad that many (if not most) Poles diagnosed with “schizophrenia” obstinately hold to the belief that they will always be ill and that they are inferior to “healthy” people.
Deadmansvitamin.com, I, too, think that it is very important to spread as many uplifting stories as possible to resist the prevailing, hope-shattering narrative which portrays “schizophrenia” as “devastating”, “debilitating” and incurable. And yes, it is very true that the drugs have a powerful dulling effect on the brain. When I was taking them, I even often found it difficult to hold a conversation and felt as if I had lost my creative faculties ! Yes, for some time I thought that I lost my capacity to write creatively, and that I lost it forever as a result of my illness. When I told a psychiatrist about this, she just nodded her head with a faint smile of compassion, as if she wanted me to continue to believe that my mind had been irreversibly damaged by “schizophrenia”; and of course she may well believe it herself … I was so elated when I realized that all these effects were due to drugs.
Diana, I know that even toddlers in the US are fed psychiatric drugs and find it utterly appalling. As to the export of the biopsychiatric treatment, I am myself struck by the fact that it has spread to so many diverse countries and that at least in some of them, such as Poland, it has been uncritically embraced by virtually all psychiatrists. I have even heard of a Polish doctor who has told her patient, a young woman, that she must have had some “psychotic episodes” of which she was not aware: a grotesque idea, but the young woman trusts doctors …
Chrys, I, too, am sure that were it not for my character and personality, I would be still obediently swallowing my pill every morning, thinking that my life had been damaged forever by my illness and trying to come to terms with this fact. My experience of psychiatric treatment has made me fully realize that critical thinking, rebelliousness and antiauthoritarianism are of priceless value and incredibly empowering. I am so glad that I learnt to be mistrustful of dominant narratives already long before my crisis. I greatly appreciate your blogs and have learnt from them that you are yourself highly rebellious and absolutely not impressed by the psychiatric establishment !