Thursday, October 19, 2017

Comments by Sa

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  • Thank you Eric. Reading this post gets me very determined anew to try to understand the alternative reality of my loved one. The problem is the bridge from my reality to theirs is broken -so far it is so incredibly difficult to have any form of verbal communication which would allow me to form any kind of understanding. Your alternative reality does not seem to include a shut down of your ability to function (to talk, to write, daily functioning etc.)…or does it at times? Rather than being impaired in your ability to understand and function in consensus reality ….you seem to see through it and beyond. I keep trying…mostly through nonverbal communications….but I wonder what might else might help……

  • I was just thinking how much Matt would have likely appreciated all the discussions and debates that have resulted from this post and the other posts written in honor of his memory. I hope that the ‘celebration of his life’ service yesterday provided lots of comfort and meaning to his loved ones. Rest in peace, Matt, you gave so much positive energy to this world.

  • Such devastating news. I only knew Matt from when he first commented profusely on MIA , and then later when he started blogging using his real name.

    His blogs and his comments helped me enormously as I struggled to understand and support my loved one. I felt in awe of how he had overcome so much adversity, and how he was able to weave his own experiences, thoughts and research into such thought provoking comments. I also felt so grateful that there was people out there like Matt that my loved one might one day see as their peer or role model.

    What an amazing, intelligent and compassionate man. This is such a loss to our community. My sincere condolences to his loved ones.

  • Such devastating, devastating news. I only knew Matt from when he first commented profusely on MIA , and then later when he started blogging using his real name.

    His blogs and his comments helped me enormously as I struggled to understand and support my loved one. I felt in awe of how he had overcome so much adversity, and felt so grateful that my loved one would one day see that her peers included people like Matt. What an amazing, intelligent and compassionate man: This is such a loss to our community.
    If anyone knows how I could pass on condolences to his family please let me know.

  • Dr. Breggin,

    Thank you so much for telling Michelle’s story.

    I hope that one day Michelle will be able to use these articles as a way to help herself find peace, and to find the strength necessary to believe in herself, rather than to believe the public’ s perception of herself. I think many people who have had exposure to the psychiatric system feel their intentions and actions are grossly manipulated to the extent they lose faith in themselves and who they are. It seems the legal system -with its emphasis on winning arguments rather than searching for the truth – can do the same thing to people.

  • so what about those who no longer seem to be able to access their ‘human’ consciousness and seem lost in an altered or ‘psychotic’ state. Is God as cruel as that? I am always so surprised when people talk about “severe mental illness’ and yet seem to be able to read and write and have conversations etc. You say you were very psychotic a couple of years ago but look at the articles you wrote at that time. I am not trying to be argumentative – just desperately trying to understand and learn how to reach and support someone in this state.

  • Thank you so much for this article.

    It reminds me so much of how Robert Whitaker writes -clearly presenting the arguments of the opposition, and then logically and fairly addressing each point. I wish Torrey would respond to your piece even if he does it on his own site. (I do not expect that that will actually happen but one can hope!)

    I am so glad you are back writing for MIA.

  • I think I get what you are saying, but I feel that most people out there in the world who are now calling Trump ‘crazy’ are not thinking that everyone is crazy in either a positive or negative way. They are pushing Trump into the more typical description of ‘crazy’, into the world of people who have been given psychiatric diagnoses. Thus all this talk about Trump being crazy is resulting in even more discrimination.

    The person I know who suffers from extreme distress is truly suffering on a daily basis, and I believe does so because of being so sensitive to the injustices and cruelty of the world, because they no longer believe that they can be safe in the world. This person is so far from being ‘morally ill’ that it is upsetting to me to see them being described with the same blanket term of ‘crazy’ that is being used to describe Trump. Whatever ‘morally ill or morally distressed’ might mean…it needs to be treated separately from a blanket ‘crazy’ term. Otherwise the stereotype that mad people are dangerous, violent, unfit for jobs etc. will continue to escalate.

    Don’t get me wrong, I love your articles and admire and appreciate all you have done for the mad movement…I just think the common occurrence that seems to be happening now – of people (who are not so enlightened as you), – calling Trump crazy….I think this phenomenon is really perpetuating stereotypes. (Also I know this article was about so much more than the Trump issue…and I really believe that speaking up about environmental issues is definitely crucial to any human rights cause)

  • Sera,

    I can’t begin to tell you how much I appreciate this article. Calling Trump ‘crazy’ is so completely discriminatory against people who have experienced madness or identify with madness. Calling Trump mad and therefore unfit for office sends the message that people with psychiatric diagnoses are not fit for positions of trust or authority. When I think about my family member and how sensitive they were to the injustices, cruelty etc. that exists in the world, it breaks my heart that anyone would describe Trump in any way that was similar to how they have been described.

  • I think the 4 components is a very good way to look at things.

    – To Samruck2, I agree that there is a a lot of untapped resources from family members and SOs. I think SOs have been made very frightened by the ‘narrative’ and what might happen to their loved one if they don’t listen to the professionals.
    I also think that because it is so hard and sometimes impossible to support a loved one at home given the lack of community support and the coercive nature of treatment – (I just finished reading the latest ‘Abduction’ story which tells the all too common story of how reaching for support can turn into terror) – cognitive dissonance kicks in and then family members and SOs feel the need to believe that the system is working and is the best route to go with their loved one.

    I guess though I heartily agree that so much more support for the MIA movement could come from a larger representation of caring SOs, I don’t think that the main reason why they are not here is because survivors are making people feeling unwelcome. I have never yet felt unwelcome here when I post as a family member. When I have asked questions about our situation I have found many survivors have been extremely helpful and have chimed in to offer advice based on their own experiences. (I also have read so many of your comments and found them very helpful in that they acknowledge how difficult it is to try and provide 24/7 support at home. My impression has been that your comments have been very well received by the community although of course I have only see bits and pieces of conversations.) Perhaps I am misinterpreting that you are blaming survivors for others feeling unwelcome, but I have noticed a theme lately on MIA that survivor responses are being cited as the main reason why MIA isn’t growing as quickly as it should (e.g. as the reason why some professionals don’t want to post here) and I do sometime feel that the few extremely negative comments made by a few people (and not necessarily survivors) overshadow the many supportive, or justly critical comments, and many thoughtful conversations that occur here on MIA.

  • Madmom Thanks for clarifying…I couldn’t agree with you more about that.

    I guess I am very sensitive about how having to ‘stay under the radar’ interferes with a healing environment and often prevents people and families from moving forward….another lovely gift from the current coercive system of ‘care’.

  • Thank you for this very important article. I could not agree more.

    To me it is the power accorded to professionals, in this case psychiatrists and psychologists, which make things so dangerous in our society: the power to treat without informed consent, the power to assert theories of ‘causation’ of mental illness as if their theoretical constructs were fact, even the power to ‘control’ use of drugs through prescriptions when so little is actual known about the real effects of psychiatric drugs in the aggregate. What is so scary to me is that I have heard good, nonconformist type people talking about how it would be good for psychologists to be able to diagnose Trump as it could control who became a political figure…..imagine a world where you would need to pass a psychiatric test to go into politics!!!!!! Then they would really have us even more than now.

  • By the way I forgot to say thank you so much for your story – I found it very helpful and informative.

    My questions to you about dosages are not just a response to your story –
    I have done so much reading and thinking about different ideas and approaches and like to hear some of the specifics. What kinds of things does your doctor check for? (e.g. blood tests or hair analysis to see if their are deficiencies?) …or rather does he/she monitor reactions and responses. What kinds of things has your doctor helped you avoid etc…..

  • samruck2,
    What you have written is so informative for anyone trying to support someone going through extreme distress. When one receives, as you call it, the ‘un-earned stuff’ in great intensity, it can be so easy to slip into thinking that all negative responses are un-earned, and thus start to provide the type of patronizing help that mirrors the type of help one often finds in the ‘system’. It can be so difficult to tease out the unhealthy patterns in one’s own relationship ( that may have existed prior to the distress, or that may have developed as a result of the distress); from the unearned stuff for which one is simple acting as a safe and trusted sounding board.

  • Hi uprising ,
    I just wanted to say that I think I really hear your point about how turning the comments off limits the abilities of readers to discuss the issues brought up by a blog, and to challenge the ‘opinions, ideologies and world views’ of bloggers. I know for me, my thinking about all these issues has certainly changed as a result of all the comments I have read over the years. However, what I am hearing from the MIA people is that they do not know how to deal with the negative ad hominem responses that also appear in the comment section and that sometimes attack the blogger’s character. It sounds like moderating these type of comments is not working both in terms of the expense, and because of how it is so difficult to draw the ‘right’ line. So I think it is not just that some bloggers don’t want to engage with comments, (like you say there is no requirement to respond), but they also don’t want to hear comments that are slurs to their character etc. Thus having comments might make some people unwilling to blog at all. ( …..My apologies if I am stating the obvious:))

  • one other thought….maybe bloggers would be more willing to engage with comments if there was a option to turn off the comments after a certain time period…(a week or so) …so they wouldn’t feel that they would have to keep explaining themselves over and over….this could be done by just adding the line of ‘the comment section is closed’ or the ‘comment section is closed at this time’ at the end of the article or after comments depending on whether it was always closed or closed after a time period.

  • I have been thinking about the issue of ‘turning off the comment button’ and just thought of a suggestion that again comes from the ‘oneboringoldman’ site, and Dr. Nardo’s solutions to dealing with very contentious comments. Prior to his comment section Dr. Nardo had a long paragraph explaining how things discussed were often very emotional for people (including himself) and then described the type of comments he would moderate, and when /why he would close down comment threads. One could see that paragraph and read it every time you were about to comment. (I can’t ‘see’ it now so it must have come up after you logged in or they have removed it now). I wonder if MIA could have a paragraph that is included at the end of each blog expressing MIA’s position. Something that would include the ideas that MIA was a site for all ‘voices’, and what MIA values and prefers is open discussion, and comments from all the community, but that MIA understands that conversations get contentious and very emotional for people and for the reason of wanting to hear from a diverse group of bloggers, allows the bloggers a choice of posting a blog without a comment thread. It could also include the suggestion that if a reader wanted to discuss any of the concepts raised in a blog, they were invited to start a conversation in the forum section. (Of course this paragraph would be worded much better than how I have worded it here.) This type of paragraph would ‘remind’ readers that even though MIA may value aspects of all blogs posted, MIA is not implicitly implying that they agree with everything said in the blog, and that there are very many different opinions about these sensitive issues. Another thing I thought about is that being able to turn off the comment button could be very important to some people with lived experience, and I think anything that MIA can do to make people with lived experience feel comfortable and safe on this site is very commendable. It makes me think of all the wonderful contributions that Monica Cassani (spelling?) has made with her website and posts, and I believe she does not (always? sometimes?) have a place for people to comment on her website.

  • HI Brett,

    I want to thank you for your latest response here and also for the work you have done over the years to promote MIA’s mission. I am glad that you described all that you have done over the years in your previous post, I found it very helpful to know about your contributions. It will make me sad if after this comment thread you won’t feel comfortable to post here. I hope you will reconsider.

    In my previous comment I expressed my deep concern about creating a MIA site for professionals and this continues to be something very, very important to me. I think my worry over this suggestion overrode everything else that people were discussing. I personally feel okay about people posting and choosing to turn the comment button off. (Although I would prefer to hear the blogs with comments, I would rather read the blogs with no comments than not have the blogs at all.)

    My deep concern over a ‘professional only’ site mirrors something that has recently happened in my community which may in part be why I found your comment so difficult to read. Although for privacy reasons I won’t go into too much detail, my 24/7 experience supporting a loved one in extreme distress for years , did not ‘qualify’ me to work with people trying to promote change in the system. Although this in itself might have been understandable, (perhaps there were things about me personally that did not seem conducive to the group’s mission); however, at the same time, a ‘professional’ whom we recently hired and who was not known to the group (and who had no other experience or training in the area of extreme distress then what we provided), WAS considered to be an appropriate candidate. (If this professional had joined, they would have had to draw from our family’s situation as their contribution to the group!)

    I believe this kind of devaluing of experience happens very frequently to both people with lived experience and their families even from the most well meaning, thoughtful people. I believe it is very common to have professionals ‘speak for’ people with lived experience and their families and I think MIA is one place where that does not happen. I think division into ‘groups’ of professional from non professional people in the area of human distress is very, very problematic and can lead to all sorts of wrong directions as has happened so frequently in the past. “Nothing about us, without us” seems to me to be a very important motto for people to keep in the back of their minds when they strive to support those who suffer in this way.

  • I just wanted to say that the suggestion to have a “MIA” site for professionals is a suggestion that feels extremely worrisome to me.

    When I glance over the comment section (I did not read it thoroughly) I see both supportive and non-supportive comments coming from both professionals as well as from people with lived experienced. This has also been my experience with other comment sections, and indeed posts. (Posts from professionals who disagree strongly with current mainstream practices often make comments that make other professionals want to distance themselves from MIA). So I wonder and worry deeply why removing the non professional or ‘personal experience’ voice would seem to some professionals to be a solution to this issue.

    I want to add in two comments from professionals I respect deeply that seem to have different solutions then from what Brett Deacon seems to be suggesting about having a `professional only`place on MIA. One is from the late Dr Mickey Nardo who often expressed his irritation with the things that some PROFESSIONALS posting on the MIA site were saying. I once got what I thought was an irritated response from him when I was bringing up how important I think it is for mental health professionals to stand up for ‘informed consent’ for treatment, even if they are not personally involved with any ‘lack of consent’ issues in their own practices. In an email exchange he let me know that he wasn’t annoyed with me and that he seldom got annoyed with service users, his irritation was with some of the anti-psychiatry broad sweeping statements that some professionals express. So although I believe he did distance himself from MIA, my impression was that is was not because of service users, but rather because of how some of the professionals posted here. On his blog both professionals and non-professionals alike were welcome, although he certainly moderated comments that he felt were attacking etc., and closed down the comment section when tempers began to flare in the comment section.

    The second professional is indeed Sandra Steingard, and I agree so much with what Richard has expressed about how Sandra deals with comments in such an amazing way. I myself made many very emotional (hopefully not rude) comments to her (again over the issue of informed consent), and I appreciated so much how she was willing to engage with me over those comments. I once asked if the reason she was able to handle anger expressed in many of the comments was because she could see the `pain behind the anger` and she agreed with that. I find her to be a very compassionate person who understands the deep suffering of those who consider themselves `survivors`.

  • “what if we took individuals who are experiencing emotional crises…..and offered them safe spaces of respite? What if, the therapist was more of a guide and support, allowing the person to go through their experience and helping them to make meaning of it in the process? What if interventions….. focused on ensuring that the person feels safe, supported, heard, and understood? What if people who had gone through the experience themselves were to teach others……….What if???”

    My answer: If only!!! This is what we have tried to do to support our loved one….and we always think ‘If only, if only, if only’ our society and systems were set up to support this type of approach.

  • I am at a point of our journey where I am stepping away from commenting for various reasons, although still eagerly reading all these blogs and comments.

    I did, however, want to make a brief comment here about how grateful I am, Sandra, that you are willing to bring up and discuss involuntary care.

    Our own experience, is that involuntary care (both ‘lack of informed consent’ as well as situations of ‘force when there was ‘no consent’); completely changed things so that we ended up on a much more severe path.

    The worry and threat of possible involuntary care kept us living in a state of hyper – vigilance. and made it unbelievably MORE difficult to access services and to provide the healing environment we needed to provide to promote recovery.

  • Thank you for your informative and respectful response here; in spite of having some critical reactions to your post.

    I have not heard of ‘avatar therapy’ and wonder if more about that will be posted on MIA.

    I really like your final comment about the importance of being able to change our minds in the face of new information, and I echo Sandra Steingard’s point that Whitaker should have been treated with great respect for being able to discover and bring such important new information to light; rather than be vilified, as he has, by so many psychiatrists.

  • Shook

    This is my response to your response way above. The burden of proof of whether a treatment WORKS should fall on the doctors who force treatment. (We shouldn’t have to ‘prove’ it doesn’t work in order to not be forced medicated. ) Doctors should not be able to force treatment on people if it MIGHT make the recovery worse. (That is what informed consent is about.) Where is your proof that the use of antipsychotic medications shortens the length of psychosis as compared to say sleep medication, and being in a safe supportive environment? (eg. Similar to the ‘Soteria approach’ rather than the ‘locking them in a room’ scenario which seemed to be what you thought to be the only alternative to prescribing antipsychotic medication) Some people report good responses to antipsychotic medication in the short term, while others seem to have worsening symptoms and terrible side effects even in the short term (within the first few months for sure and maybe much sooner too). For a person who does not respond well to a low dose of antipsychotic medication, their fate seems to be to be given increasing dosages. There are many people who are not recovered, many who are severely ill who are left on antipsychotics. I wonder how many ‘brief’ psychotic attacks have been changed into chronic illness due to bad reactions or poor tolerance to antipsychotic medication. I noticed you did not address my point that you find the severely affected in state hospitals as well as on the street.

  • Shook,
    Your comments remind me of the “good, modern” treatment that I witnessed at a very respected hospital. The biggest problem I have with your comments (and the treatment at that hospital) is the lack of humility and uncertainty that leads to justification for forced medication. You cite extreme examples of horrific behaviours which also could have been prevented by providing other kinds of support or ‘forced safety’ (eg. humane confinement). Prescribing antipsychotics without informed consent, when it is not known whether or not it will worsen someone’s condition, is negligent.
    We heard this kind of faulty reasoning repeatedly. (e.g. medication is not proven to work, but if the patient gets worse than we have to use the medication (that is not proven to work). We was similar faulty reasoning that worked to always protect the idea that’current best practice’ is best. (e.g. “people get sicker in the hospital after being medicated because the disease is progressing” etc.
    You also say “I’ve met people who never took medications and the disease process was so severe that they were constantly preoccupied with voices and paranoia. They didn’t talk or interact with anyone, including their own family. Do you know what happens to those people? Look to the streets.” What about also “looking to” state hospitals where people like that,drugged with neuroleptics, sit and ‘don’t talk or interact with anyone, including their own families”?” Dr. Torrey talks of these patients in his books. I think the medical community refer to these people as ‘treatment resistant’, yet they keep them on neuroleptics anyways, probably killing any chance they have of getting better in the future.

    Some people who are in a severe state do seem to get better after a number of years and finding the key to how to improve the chances for more and more severely distressed people, is going to require the humility and openness that most psychiatrists seem to lack. In 25 years from now, what parts of ‘current best practice’ will the more thoughtful psychiatrists be apologizing for? Given all the uncertainty of treatment, the best ‘good’ psychiatrists can do at this time is to provide information about the uncertainty of treatment, provide full consent for treatment, fight against the current coersive aspects of ‘treatment’ that exists in the system and work with the wider helping community to ensure safe, humane spaces for people in extreme distress to be until they can move forward.

  • I am grateful that you can both see and admit to mistakes about how you understood schizophrenia, and the damage caused by antipsychotics.

    To me the next obvious obligation would be for you to try and ‘undo’ some of the damage caused by the misguided beliefs of your profession by speaking out against forced treatment, and by speaking for ‘informed consent. ….Will you? People in acute states can be kept safe without forcing them to take antipsychotics. No person should be forced to take drugs that have such terrible side effects and have not been proven to be more effective in the long run.

  • Thank you for this article. I also believe hope and humility are the key ingredients to providing support to people in extreme states. Passion and caring are important too, which made me very annoyed with the statement that professional said to you that you were “too passionate to be able to critically analyze [your] ideas”. This statement seems to me just another way to undermine a narrative different than the dominant narrative; even if it is phrased in a more ‘positive’ way ( probably because the person also likes and respects you). I personally have never seem any professional critically analyze their ideas more than you have over the course of your journey. I , for one, hope you keep blogging even after you stop working.

  • Dr. Gold,
    In case you are aware of this article and are reading these responses to try and better understand why people have the reactions to psychiatry that you describe, I thought I would add this comment. You seem like a well- meaning person, but you do not seem to understand the ‘humility’ and ‘uncertainty’ that is so necessary that would enable you to approach your patients in a truly helpful and respectful way, in a way that would ensure that you did not add any harm to very vulnerable people

    I will just use one example (from the many I saw) from your article, that demonstrated this lack of humility and uncertainty in regards to what is ‘best treatment’ for your patients. You write “And, without understanding the therapeutic benefit of engaging in connections with others on the unit, it can feel restrictive to have visiting hours and not be able to have a significant other or family member spend the night.” It is such an arrogant position that you take here, particularly given the very limited training in counselling that many psychiatrists seem to have. I think it is pretty established by now, that stress and fear (and lack of sleep) exasperate the situation of a person who is in extreme distress. You assume, from this statement, that the surface connections that a person might develop and engage in during the limited time of an inpatient stay, are more effective than the patient’s deep trusting relationships, to help him/her through such a terrifying, fearful time of troubling thoughts and strange feelings. I think you should let the patient let YOU know how he/she feels the most safe and what would be most helpful. I know when my loved one was experiencing very confused thinking, a terrifying night spent alone in an inpatient unit resulted in staying awake all night and a much worsened condition. The response from staff? “It is very common for people to get worse once they come to hospital”. (My thoughts about that response: “No Wonder”).

    I hope I have been able to clearly express to you, why, as a family member, I don’t think you ‘completely get it’. If you are serious about wanting to be an ally to patients, why not read the blogs on MIA of psychiatrist Sandra Steingard , who has worked for decades in this area and who advocates ‘slow psychiatry’. She is always responsive to emails from all, so I am sure you could get a lot of guidance from her.

    If anyone from MIA is posting directly to Dr. Gold’s article, could you let her know there are responses to her article over here on MIA?

  • Wonderful! Such a hopeful new direction. Thanks for all involved in creating this program.

    On another note…. I wanted to draw people’s attention to the petition that is going around for Reid Bertino (who recently wrote the blog ‘I am insane’. ). Details can be found in the ‘Support for Reid’ post in the organizing forum. It would be great if he got a bunch of signatures on his petition


  • Hi travailler-vous,

    I only have just now (a year and a half later) seen this wonderful, heartfelt response you wrote! (I guess I saw the first comment and still I don’t use the ‘notify me’ button that is available on this site very efficiently.) I am not sure if you will ever see this reply, but I realized that I haven’t seen you commenting much anymore and just wanted you to know that I hope all is going well, and I too wish you the very best!

  • I appreciate the above discussion about the importance of compassion and of avoiding simplistic judgements.

    For me, however, the main problem with ‘blame’ is when ‘outsiders’ (in particular those outsiders who are in a position of power such as therapists and psychiatrists), generalize their experience or observations to assign ‘inaccurate blame’ based on theoretical constructs (even theoretical constructs that have a lot of value). This is why I appreciate so much the following paragraph in this article:

    “A better approach is for professionals to be uncertain about what happened to cause the psychosis and what is going on now, and to support everyone in exploring possible viewpoints or understandings, in a way that supports taking personal responsibility for mistakes but also seeks to avoid inaccurate or excess attributions of blame or responsibility.”

    For me – this point cannot be emphasized enough given the wide variability that exists with people who extreme states -and given the terrible things that have happened in the past (and that continue to happen) both to the people who experience extreme states, and also to their families. The answers need to come from within the person’s particular story: ‘what happened to you’, NOT what others tell you has happened to you. Another quote of Ron’s that I have alway appreciated is when he says something like – ‘people can break their ankle from a big accident, but also from stepping off the curb’. We must not make people feel that their ‘reasons’ aren’t ‘significant enough’ or ‘bad enough’ to warrant such an extreme reaction.

    That being said, it makes complete sense (and there is lots of research to support the position), that the more adversity you face, the bigger the chance you have of a extreme reaction; so I know it is also important to not lose sight of that, nor to lose sight of the importance of creating environments that allow a person to freely talk/explore ‘what happened to them’.

  • What a great, practical initiative. If there is any positive response from ‘Navigate’ to ‘updating’ the Family Education manual, I wonder if they would consider using “The British Psychological Society Report on Psychosis” as a resource manual – I am not hearing very much about that report any more.

    This is so discouraging – all the new information that I think must be slowly getting ‘out there’, and then hearing about such a backward manual.

  • Extremely well written and important critique. I find that the ‘changing face’ of psychiatry (e.g. the anti-stigma campaigns, the inclusion of personal stories such as in this documentary, the introduction of ‘open dialogue’ type interviews in some inpatient units); masks the more fundamental problems of mainstream psychiatry that are ongoing (lack of informed consent for treatment, simplification of complex issues, the psychiatrist as ‘director’ rather than `consultant’, lack of information about other routes to recovery).

  • I had wanted to also say that having a huge wealth of data like this from families (which could include recording drug use, resulting behaviours etc. ) could also help with finding answers to questions such as which people in extreme distress (and when) might benefit from the short term use of neuroleptics, and which people in extreme distress are further harmed by using these drugs, EVEN in the SHORT term.

  • I also love this post and love the initiatives. I too think a “family” bucket is so important for the reasons rossaforbes describes. In addition, I think that there is such a wealth of information that the families of people going through extreme states carry, that is not being tapped and which could go a long way towards providing information about the different ways, different people go through extreme states, and what recovery can look like (with and without drugs). If there was some kind of anonymous, online way for families to provide detailed information about, say, the progression of the participation in simple daily life activities, and different things tried, etc., etc, it could (after years) eventually provide great help, hope and information for future families. Of course this kind of information is most powerful coming from the survivors themselves, in their personal narratives; but I am talking about something a little bit different than that. I am talking about recording things that could be compiled to provide objective data, for all sorts of things. I am also talking about recording things during the times when people are so out of contact they are not yet speaking for themselves. This could provide quite a different narrative that is currently provided by the mainstream psychiatric community.(You know all those gloomy predictions about what it means if ‘the state of ‘psychosis’ lasts for 6 months’ etc.) To give just one example: If one knew about other people who had remained lying down in bed pretty motionless for about 21 hours each day, and that this went on for months, and yet the person then recovered from that state without being forced to take the drugs (which seemed to have preceded so many of the problems in the first place), one would be able to function with much less stress when supporting a loved one in extreme distress.)

  • HI Ron,

    Thanks so much for including the video on the application of the compassion for voices approach. The 5 minute video of compassion for voices is something we have watched a lot, and this lecture from Dr. Charile Heriot -Maitland was very helpful to me as a support person. I like how he talked about developing one’s ‘soothing system’ and how important it is -it may me feel so hopeful about how the environment we are trying to maintain in our home may be allowing our loved one to eventually work through things. I liked his humbleness, and how much he believes in the brain’s ability to heal itself. There was even some very simple practical suggestions (a breathing app which has a visual to help someone slow down their breathing) that we thought might be useful to show our loved one.

    I wonder if there is any way that Dr. Heriot-Maitland and Robert Whitaker could add this (the 5 minute video and the lecture) to the ‘education’section of MIA so more people would realize it was out there?

  • Hi Oldhead,

    I do know what you mean about ‘psychosis’ being the word for the most extreme form of “mental illness” and have experienced first hand how that word changes everything in the eyes of both the mental health system and society. This reminds me of Noel Hunter’s articles about when she has tried to press psychologists who ‘treat’ dissociative disorders to describe how ‘dissociation’ is different from ‘psychosis’, and how the professionals’ responses indicated how uncomfortable they felt about there being any connection between dissociation and psychosis. I think I am going to be more careful in the future to talk about ‘extreme distress’ or extreme states so as not to push my loved one further into that ‘box’. Perhaps not having a ‘word’ can help us look at ‘individual situations’ as per the open dialogue approach.

  • Hi Truth In Psychiatry,
    Your comment highlights exactly my own concerns about this discussion, and I think it is a crucial ‘addendum’ to have with the article! I do think it is important to consider all the risks and factors that may play a role in an emotional breakdown, but unless professionals or other helping people approach any specific situation with a great deal of humility, and without preconceived ideas about what has happened, they run the risk of doing great harm. This is so especially true for something like psychosis that seems to have so many different causes both physical and emotional. (Like Paris says things such as heavy metal posioning, but there could also be other physical reasons that we haven’t yet figured out) That is why I also believe that the open dialogue approach is such an important approach to take.

    I also think that it is so important to so careful when writing about theories, and to always be careful not to overstate theories, I actually feel more concerned about the lack of ‘accuracy’ than about whether something sounds ‘parent blaming’ or not. For example a statement such as “so much of the trauma that shows up in psychosis is actually preverbal experience contained in the body”, is overstated, in my opinion. It might be or it might not be, and though there can be great value in working through plausible theories, one must be always aware that they are theoretical, and treat ideas related to theory with the necessary humility. Likewise although I found this idea interesting and think it could have some truth “….if some terrible trauma happens later in life they’re less likely to develop psychosis due to having a stronger foundation (they might develop PTSD or mood problems instead)”, I don’t think it is NECESSARILY true, It could be that people’s bodies react in different ways to trauma.
    If writers could be really careful about how they state theories and how they talk about ’causes’, then maybe we could avoid these kind of back and forth comments, and discuss the content of the article more freely.

    Otherwise I really appreciate this article and commend both Paris and Matt for their work!
    ps I have tried to send a comment about this 3 times and I never see it so hopefully multiple comments wont be posted!

  • Truth in Psychiatry,
    You have described perfectly my own concerns about this discussion . I too appreciate very much the work of both Paris and Matt, but I feel your comment here is a very necessary addendum to this article.

    Paris and Matt , Thank you so much for this article. I am so sorry to hear about the New Zealand health care system. I hope, Paris, you will be able to continue your good work in some capacity that will lead to more positive changes there.
    About the ‘names’. I really agree with what someone said on this comment thread that saying someone is ‘going through psychosis’, sounds much different and better to me then describing someone as ‘psychotic’. Saying someone is psychotic sounds more like a ‘character trait’ rather than a hopefully temporary state they are going through. It also lends itself (in popular culture) to being used interchangably with other terms such as ‘psycho’ or ‘psychopath’.

  • I also could not believe the effects I witnessed in my loved one when Olanzapine was introduced. I always wonder how much of the terrible time they had afterwards was due to drug withdrawal vs symptoms of distress (for lack of a better word). I often think in our case if it was both-that the drug use and withdrawal fueled the distressed responses into something unmanagable. I was curious if you experienced all these horrible symptoms after ‘tapering slowly’, or if you were forced to stop more suddenly, and how long your symptoms went on for.

  • “The anti psychotics certainly work short term during crisis periods”…I was reading over my response and just wanted to add that although anti psychotics are reported to to help some people in the short term, in our case I truly believe that is what set things off on a much more serious course for our loved one. I can’t stress enough how important I think it is to ‘WAIT” (for at least 6 months if not a year) after a first episode before even considering drugs because of this possibility, and in order to try and figure out ‘what’s what’ in terms of the ‘2 continuums’ model. I think Sandra Steingard’s ‘slow psychiatry’ speaks to this by saying ‘hold off for as long as possible with drugs.

  • Knowledgeispower, as a family member, I want to thank you so much, for your comment; and I completely agree with what both you and Matt say.

    I think the open dialogue model is so powerful as it doesn’t presuppose any particular cause. Instead, as least how I understand it, issues and factors come forth through the discussion of the person with their community. If the decision making power is in the hands of the individual, then hopefully his/her community could also exclude any relationships that the person felt were too abusive to include. If the way forward with healing comes from the indivudual circumstances of the person, like in Open Dialogue, then the community is protected from ‘theory driven’ therapies (e.g. the schizophrenic mother as you describe above) that can so severely damage the individual and his community.

    I often think of going into psychosis ( from my simple ‘family member’ perspective) as being a result of two continuums. One is ‘vulnerability’ to psychosis (which would include all the possible medical, genetic , hormonal, diet, physical environmental toxins, a person’s individual body ‘response’ to stress, etc., etc, which may or may not be turn out to be things that can contribute to psychosis). The other continuum would be all the adverse ‘psychological’ events that a person may experience (jtrauma, abuse, social issues, bullying, things happening at critical developmental times etc.) If you have enough of ‘one’ continuum (eg. drug toxicity as described in Katinka’s article about the `drugs that steal`), you don`t necessarily need anything from the other continuum to make you go into psychosis. If you are a person who suffered severe abuse or trauma, it is amazing if you don`t go into psychosis.

    As a family member I look back at the pre-psychosis time, and think that there were certainly ways I could have been different (if I had understood more ) to better support the extremely sensitive, ethical and creative soul I had been entrusted with. However, more heart breaking for me, is how I reacted during the time of the break down. The way my loved one was being, was so exactly similar to the adolescent angst that èveryone`talks about. I had no idea that the depths of the suffering might have been much greater. Then, extreme anxiety set in as I did not want my love one to have the symptoms that could be so hurtful to them, and that are so full of stigma in our society (..spoiler alert …if you try to ignore or suppress them – they don`t go away). (Just as an aside – I was anxious about how the stigma would affect my loved one’s life- not about any concern about stigma for me as a family member.) Finally Rossa Forbes has spoken so eloquently about how a family`s treatment of a loved one can change as a result of the way a person in psychosis starts to act and be towards others. Those early days when I tried to ‘criticize or cry`in order to reach my loved one, and to bring them back to be the person I thought I knew so well, will also be always burned into my memory.

    Imagine if I had instead being enveloped into a supportive, accepting community which could have guided me through my reactions to my loved one`s extreme distress. Imagine what a better support I could have been and what a difference that might have made to my loved one.

  • Hi Circuscats,
    Thanks for your comment. I am so happy this article is reaching such a wide audience. it is so important to be having this discussion with people who have different opinions about the value of psychiatric medication rather than “preaching to the choir”, so to speak.

    Katrina’s response to Kate below seems to speak to some of your concerns. I just wanted to add that I have been reading MIA for a few years now, and I find that people here do not argue against an individual’s experience, or individual choices with drugs. Some people who post here take psychiatric medications. However, what a great many people, including myself, have a problem with, is when people have not given ‘informed consent’ before taking these drugs. `Informed’ consent means knowing all the possible risks of taking these drugs, and also being given an honest ‘evaluation of the literature in terms of any drug’s effectiveness. When you suggest that Katrina should not publicize her experience because other people might not take medications, you are, in my humble opinion, supporting that people should not be given informed consent. This is what the psychiatric community has been doing for decades, and I think is one of the major reasons why we can’t get to the truth of what helps and what does not help. Also I think it is important to realize that Katrina’s story is not just about a ‘drug company’ cover up , it is about psychiatrists not believing and not being able to see that drugs were causing her symptoms. This is very serious indeed and povides very strong support as to why Katrina’s story should be spread widely and loudly.

  • Thank you so much for this article which is sure to bring a lot of attention to the dangers of psychiatric drugs. What will be so convincing to people about your story is how quickly you returned to health after stopping the drugs. Your symptoms seem to be entirely related to psych drug use.

    There are also many other people who suffer from psychosis, severe apathy (unable to dress), etc. independent of psych drug use. However, I believe there could be many of these people whose condition is made worse by psych drug use. If symptoms can be ‘created’ by drug use as in your case, it only makes sense that these same symptoms could also be ‘made worse’ in vulnerable people. I get so irritated when I hear psychiatrists argue about when, or whether ‘relapses’ are due to ‘illness’ rather than ‘medication’ , as if it is necessarily an either/or situation. So called ‘treatment resistant’ people are often left for years on drugs, never getting the chance to see what would happen if they had years to slowly recover without the psych drugs, drugs that could very likely be hindering their recovery. In the pre- drug area, there are stories of people recovering after years of languishing in mental institutions. I wonder if one ever hears these kind of stories now about people who have spent years on psych drugs in mental institutions.

  • Hi Selena,

    I just came back to this post and saw this request you have made for ongoing support from a group of people in terms of an online forum. I just went to the forum and saw that there were no responses to your posts and that you have stopped posting. I wonder if it is because, like me, people commented on Reid’s post and then moved on so never saw your request. The other thing I wondered about is whether those of us who do not feel it is safe to post publicly, feel leery of signing up to another site that requires your name and email.

    I for one would love to enter into discussions with you and hear your updates about Reid. I know exactly what you mean when you say that your world becomes very small in terms of who is willing to listen on an ongoing basis to your situation. And just so you know, reading your comments and hearing about how Reid is so concerned about your well being , makes me think that you are exactly the type of person I would like to discuss these things with.
    Do you think that you could open a forum for Reid on the MIA site ? I would certainly be there very regularly and believe it would support me as much as it would support you.

  • I didn’t see in this article anywhere whether they followed the Open Dialogue practice of holding back from using antipsychotic drugs until much, much later. (and then in low doses for a much smaller percentage of people). To me this is a very crucial part of the Open Dialogue format. I hope ‘collaberation with patients’ means an absence of ‘forced treatment’ and truly ‘informed’ consent when medication is used.

  • I have really appreciated your article and your comments here, particularly in this paragraph: “… it is not necessarily trauma and abuse that causes psychotic experiences/withdrawal. It can be stress of any kind, isolation, fear for any number of reasons. The potential causes are many and they all interact with each other. But I think there is always a set of reasons and a story behind why people are withdrawn and psychotic at a given time. Such experiences are not a meaningless brain disease.” Our family has been working very hard to try and provide the type of environment at home that will best support our loved one. It has been a few years now, but what I realize is that our loved one is at least no longer experiencing the type of ‘terror’ I used to see. I still see distress, and I worry very much about the limited communication and interaction with the world. Hearing stories like yours are vital for giving me the hope and the confidence I need. I believe as more people bravely come forward to tell their stories, the hope these stories provide will snowball and more and more families will feel empowered to stand up to the mental health system when their loved one needs them to stand with them.

  • Just wanted to let you know that I am with you Liz in both your response above to Harper West above, and this response here. What is happening in terms of the dx and medication of children with ADHD is truly horrifying. However I find that Dr. Berezin’s posts that explaind what he believes to be the causes of different conditions that get labelled as psychosis, scizophrenia, ADHD etc., (while containing a lot of good stuff), are full of simplifications and over generalizations. Why his posts are disturbing to me is that he is a professional – a psychiatrist- who presents his theories as if they are ‘facts’. Our community has suffered enough from the `over confidence’ (to put it politely) of psychiatrists who claim to know things to be true that they can not possibly know. I think it is sad as I think he could have so much to offer if he approach these topics with more humility and openness. I actually think MIA should put disclaimers or do something on posts (from professionals in positions of power) when they present theories as facts. In my opinion posts like these (and responses like Harper West’s response) can really undermine the credibility of MIA.

    Mr. Berezin could

  • Hi Truth in Psychiatry,
    Whenever I read your wonderful story, I worry that psychiatrists like Pies will dismiss your input by saying that your son had a “brief psychotic disorder” and that people with brief psychotic disorder do recover quickly, and that psychiatrists see this happening frequently after standard ‘best practice’ in the hospital.
    Indeed when my loved one was in the hospital and put on antipsychotics, we were told that being on antipsychotics would ‘hopefully just be for a couple of months’. The problem was that for our loved one, milder symptoms morphed into much more serious symptoms first after forced commitment, (what kind of logic is behind separating people from the people they know and trust at the time when they are experiencing troubling thoughts and confusion over reality!), and then again after drugs were introduced , withdrawn and changed. Of course the ‘narrative’ of psychiatry insist that all worsening symptoms are always due to ‘illness’ not ‘drugs’.
    I wish so much we had been able to give our loved one the type of support that you gave your son –and wonder if our story would be more similar to your story if we had.
    This is one of those many areas that psychiatry refuses to consider – does their “treatment’ (immediate use of antipsychotics, lack of ‘wrap around’ support from loved and trusted people etc.) change the trajectory of some people from having ‘a brief psychotic disorder’ (to use psychiatric terms) to something more severe and chronic. If psychiatrists believe in brief psychotic disorder (and they do) why on earth does their ‘best practice’ not, AT THE LEAST, include a ‘wait and see’ period of at least 6 months, before subjecting people to drugs which they know have such huge effects, when they themselves know many may recover quickly without them,
    This would all be figured out if ‘ethical’ studies for first episode psychosis, such as the one Robert Whitaker describes in his response below, (and similar to your son’s experience) were undertaken.

  • Alex – I found reading about your story and then your questions about why some people heal and others get trapped very interesting. This is the question most prominent on my mind as I try to support my loved one on the journey back to wellness.

  • “It rises to a level of groupthink that I have never before encountered in any societal institution.”

    Such a chilling comment and so accurate – this was our experience too. I join others who give you a big thank you for writing such a powerful post. Best wishes for your further recovery.

  • Eric,
    I don’t want to side track the conversation on this post, but it sounds from your comment that you are ‘out’ of the ward now. I sure hope that it is true and I wish you all the best.

  • Hi Selena and Reid,
    What a heart-breaking story and so terrifying and so mind numbing to try to live through such an unjust system.I can certainly support all you say about the crazy -making responses that come from ‘the psychiatric team’. From our experience with our loved one, everything you say resounds with truth.

    Two comments Reid made particularly resonate with me: “Be open. Be honest. Be transparent.” I’ve come to understand that this motto only applies to the patients, not to the hospital. The hospital is rarely held accountable for anything, and legally doesn’t have to be held accountable. “……We found this to be so very true and so very scary.

    The second quote really underlines what a caring and thoughtful person Reid seems to be:
    ” I’m not just writing for myself. Most of the patients here can’t speak up for themselves like I can, and therefore are utterly helpless to defend themselves against the lack of accountability.” It is so true that so many people that suffer are unable to write such a compelling post (or any post) Thank you, Reid, for thinking of them even as you are in the middle of your own terrifying experience. And Serena, as a mother, my heart goes out to you – it is obvious from this post what a great support you have been to your son.

  • My thanks to all who organized and participated in this Vigil, and my thanks to you Sera for your articles and your perseverance in keeping this issue in the spotlight. I believe this is exactly the type of tangible action that will eventually lead to change (even if it feels that noone is listening). Let’s hope for at least some small positive change on Sunday. At least the Globe reporters I am sure are now reading all of your articles .

  • As always – thanks so much for your caring and persistence. It has really helped as we try to support and help navigate the best course for our loved one.

    I think the reason why you feel like a ‘dog with a bone’ is because your critics either can’t or won’t really listen, consider and give the proper weight to your arguments.

  • Thank you Bonnie for a very insightful article.

    You say ” oppressed groups, harbour an inherent distrust of the establishment, have a standpoint which, while hardly foolproof, uniquely positions us to see through the official line”. This helps me realize how difficult and in some cases impossible it can be for people for whom ‘institutions’ have always provided a sense of safety and security, to really `see’ what is going on, and to understand what is the best way to go forward.

    Now that the ‘security blanket’ of ‘institutions we traditionally depended on have been ripped out from beneath us, our way forward to help our loved one, has been fraught with so much self doubt and continual reanalysis about what is the best way to promote recovery, and we have felt such a lack of support from our ‘traditional’ community (despite the best of intentions in some cases). Luckily we have been able to slowly forge a new community helped by people who have a much better understanding of how inadequate systems are for oppressed groups.

  • Thanks so much for this analysis and update.

    It make me so relieved to think that Garth is now at home with his family and being treated with empathy and compassion. However, it frightens me so much to think that if this could happen to someone who did not have the symptoms of ‘schizophrenia’, what chance would a person who did have more symptoms of ‘schizophrenia’ have had to escape from that type of torture. It is truly horrifying how fragile human rights are once someone is diagnosed with mental illness.

  • I also would love to have this very difficult discussion discussed more, and I would if both Dr. Breggin wrote more about their opinions and feelings on this issue. I often talk about differentiating between ‘forced safety’ and ‘forced treatment’ but I understand there are so many ways people can feel traumatized, and I am sure ‘forced safety’ would look very different depending on how much respect/understanding someone had towards the person.

    Based on our family’s situation, I would argue that forced treatment by antipsychotics should never happen even in the short term due to the lack of science behind the long term effects of even short term use; because of the potentially very severe side effects, but mostly because it is our belief that the introduction of antipsychotic medication set our family member on a much more severe course of illness.

  • Thank you Dr. Breggin,
    This particularly resonates with me:
    “Going to a psychiatrist, or to other healthcare providers, exposes the already distressed individual to the risk of incarceration and forced treatment with little or no due process…… People often avoid seeking help for fear of being locked up and/or forced to take drugs, when voluntary psychotherapeutic interventions can be lifesaving”.

    As a family member trying to provide a healing environment outside of the traditional mental health system we found the ‘threat of involuntary treatment’ seriously impeded our efforts. We needed to be constantly vigilant that “helpful citizens” did not call for ambulance etc. that could put our loved one at risk of being forcibly medicated. The stress of this was enormous, not to mention that it seriously limited our ability to hire/find other people to help us in our efforts. Luckily we survived the ‘intense period’ and our loved one has moved away from that stage. Even now, though, his recovery process is limited by this ‘threat’ as we can’t encourage or support his independence as much as we would like to (going for walks alone, allowing him to express himself loudly and in whatever way he needs to at home for fear of others overhearing etc.etc.).

    In my responses I often make the distinction between ‘forced safety’ and ‘forced treatment’. I wonder what you think about having ‘Forced safety’ as an option for those very difficult situations? (to be used very carefully in situations such as helping someone avoid jail, or hurting themselves, or as a way to help more people support the end of involuntary treatment)

  • I am so glad you will try to get this piece into places like Huffington Post and Psychology today. I think it would be so valuable for the average citizen to be able to compare the pieces back and forth.
    I followed the blogs of Pies and Frances and tried to argue points and at times they seemed to be genuinely trying to listen to what responders were saying and trying to use logical arguments to back up their points. But as time passed it became too mind numbing to participate – I could clearly see what could only be described as this ‘cognitive dissonance’ you speak of, in action. Frances present studies that supported their position, and then Pies responded to points that had been made by critical studies only when they came up from commenters. A series of papers were written, each becoming more ‘sleek’ then the previous one in terms of presenting their case. Seeing that the whole discussion was initially prompted, I think, by an ‘overview of studies’ that had recently been published and that did NOT show that psychotic medications improved outcome, it was mind boggling to see the final article by Pie (in The Psychiatric Times) be given the title “Long Term use of antipsychotic treatment: Effective and often necessary with caveats” . How does “effective and often necessary “come from a review of studies that does not prove antipsychotic medication improves outcome?

    Frances and Pie have both spoken about how forced treatment is either a ‘paper tiger’ that rarely happens, or that ‘consent’ is important. Yet our experience with a very trusted and prestigious hospital showed us that forced treatment happens regularly, and very quickly, and neither of these men seem to either acknowledge or speak to this issue.

    The most compelling point for me is described when Whitaker writes the following:
    “At the same time, what does it mean to be on the drug and to not have relapsed? If 70% of the drug-maintained patients failed to improve or worsened, with only 5% of the hospitalized patients who stayed on medications discharged, what is the state of a “non-relapsed” patient? Is a patient who sits quietly on a ward in a subdued state judged to have been “non-relapsed”? If someone is still too dysfunctional to be released, how does that qualify as a “good outcome,” e.g., non-relapsed?”
    I feel like I have figuratively jumped up and down screaming about this issue, saying “what about ‘do no harm’ ” ; only to have ‘good’ psychiatrists reply “well that is how it works in medicine…you do your best judgement with what you know at the time”…..How can it possibly be in anyone’s best interest to be given medications (often without informed consent) that leaves them in such a subdued and dysfunctional state….for years!!!!!

    I remember Sandra Steingard’s describing how she felt after she read Anatomy of an Epidemic, and how it caused her to rethink Psychiatry. I wonder why more psychiatrists did not have responses like that. Perhaps they have, but perhaps many of them are afraid to voice their opinions as Sandra Steingard, just like Robert Whitaker, have been viciously criticized by prominent psychiatrists in the field, when they have tried to present alternatives to the current ‘narrative’ surrounding the use of antipsychotic medications.

  • Another article that is extremely helpful in a practical way for our family.

    You say:
    “Instead, we may find ourselves at war with ourselves, even long after the trauma is over. One part of ourselves may want to remember and focus on the trauma and being hypervigilant and distrusting, to avoid chances of the same thing happening again, while another part wants to forget the trauma, and to relax and start trusting again so we can go on with everyday life.”

    I wonder if this is exactly what we are hearing when we listen to our loved one have arguments with himself about whether or not he is allowed to “be okay”. (I would love to write more details but can’t for privacy reasons as it is not my story to tell……)

    It is funny how long it takes (at least for me) to really understand new ideas that are different to my set way of thinking. I don’t know how many times I have watched Eleanor Longden’s video about “Stuart and his Voices” and how much I have thought about compassionate based therapy and yet still didn’t put it together that the ‘arguments’ we are hearing might be related to feelings of lack of self compassion rather than anger towards others or situations, (regardless of how/where the difficulties arose in the first place), and how further developing a compassionate self seems to be so crucial to ultimately solving difficulties.

    I try to not say too much in response to my loved one, just make assurances that I am listening and trying to understand, but sometimes when I have made comments back along the lines of recognizing the need for self compassion (…about not blaming oneself etc.), the resulting calmness has been amazing.

  • I couldn’t agree more about the ridiculous nature of the term’ ‘treatment resistant’ depression. It joins a long list of comments made to us by psychiatrists in the hospital that involved some form of circular reasoning.

    Thank you for your article Christopher. What impressed me the most is how carefully you write about your experience, acknowledging the uncertainty of what caused what etc. Thank you