How You Have Changed Me

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It has been a year since the Mad In America website launched and I posted my first blog.Ā  On so many levels it has been a remarkable year for me.Ā  I traveled to Finland and began training at the Institute for Dialogic PracticeĀ  I have tracked my experiences with neuroleptic drug taper and presented the first year of data at the Institute for Psychiatric Service meeting.Ā  At my clinic, we have initiated a new program where peers and professionals work as colleagues and we offer support to individuals who are in acute distress. Ā I have joined the board of the Foundation for Excellence in Mental Health Care and have had the great privilege of meeting my fellow board members.

Much of what has been positive this year has come about from my connection to this website and to Robert Whitaker.Ā  I have a deep respect and gratitude for Mr. Whitaker’s work and for the opportunities he has brought my way.Ā  I was told recently that some of my colleagues perceive me to be overly influenced by his message. My initial instinct was to respond defensively as if it is a bad thing for a physician to be influenced by a journalist. But on reflection, I took the comment in a different way. It is a correct observation to say that I have been influenced by Mr. Whitaker’s writings.Ā  I think he is a smart and critical thinker whose contributions are important for psychiatry.Ā  Physicians make a mistake when they do not listen to outsiders. Physicians pride themselves on their belief in the value of the scientific method.Ā  Critical to that method is challenge and debate.Ā  What has troubled me most in psychiatry over the course of my career has been a diminution of debate.Ā  My experience with psychoanalysis was that criticism was often seen as a reflection of a person’s inner conflicts. My experienced with what many of you call “biopsychiatry” is that criticism has been stifled by an overly cozy relationship with the pharmaceutical industry.

I was not sure what to expect of blogging on MIA.Ā  I admit that at times I have struggled with critical comments.Ā  Ā When I had the impulse to be dismissive of angry and negative voices, I tried to hold back and reflect on the message. You are a smart and well informed audience. I know that many of you are eager to change the mental health system; for what it is worth, you have changed one doctor. Ā I have learned that labelsĀ  – even when offered with good intentions – can be hurtful. Ā I have realized the limitations and harm that the medical model can have when applied to emotional distress and suffering.Ā  Rather than respond to criticisms of my work with the beleaguered thought that I am just doing the best I can under the circumstances, I have begun to think more about how we can change those circumstances so that we are more responsive to the people who come to us seeking help.Ā  I understand that individual experience should not be flatly dismissed as meaningless anecdote

I believe your message is reaching a broader audience.

In the winter 2013 addition of “NAMI Advocate”, there was an article by the NAMI Medical Director, Ken Duckworth entitled, “The Sensible Use of Psychiatric Medications”. Ā Ā This was notable to me in its tone of sobriety.Ā  He writes about medications, “They may be a key piece of the recovery puzzle, but they are rarely enough to promote recovery alone.”Ā Ā  He talks about the need to ask if the medications are actually effective for an individual and if the benefits outweigh the risks and side effects.Ā  He addresses at some length his concerns about the over use of antipsychotic medications in children and adolescents.Ā  Although many of you would disagree with the basic premise of this article, for me it signaled a shift in NAMI in that it tacitly accepted that medications have their limitations and that they may not be indicated for everyone.

David Brooks, a conservative commentator for the New YorkĀ  Times recently awarded his Sydney Award for the best essay of 2012 to Tanya Marie Luhrmann who wrote “Beyond the Brain”. In discussing the evolution of ideas about psychosis, Brooks writes, “scientists … concluded that schizophrenia was a brain disease. But the drugs that treated schizophrenia as a biological disorder did not work well.”

The Luhrmann article is a departure from the promotion of the simple brain models that so many of us find lacking and gives credence to the powers of social context in the development of extreme states.

I am heartened by these articles.Ā  However, my day to day work continues to be a challenge and if I ever have a self-congratulatory moment,Ā  I am almost invariably confronted by a situation in which I am not sure how to be of help or where someone points out to me how our system has failed her or a loved family member.Ā  Engaging with someone who is in distress but is not interested in getting any help remains the the biggest conundrum for me.

I guess it is good that a premise of Open Dialogue is the toleration of uncertainty because I admit that I leave 2012 with great uncertainty. For the next year, I will continue to listen to what you have to say.Ā  Thank you for your contributions.Ā  They enrich my life.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussionā€”broadly speakingā€”of psychiatry and its treatments. The opinions expressed are the writers’ own.

70 COMMENTS

  3. Sandra,

    Your comments have helped me grow.
    Because of your sincerity and desire to learn; I’ve come to see that there are some good people in psychiatry.

    Had it not been for your contributions on this site, I would not have read the words of a good person (who happens to be a psychiatrist), who always tries to do the right thing.

    These words of yours have given me hope.

    We may have had our disagreements, but I respect you a great deal.

    Happy New Year.

    Duane

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  5. I became aware of this page only around a month ago, and decided to remain a follower and then a participant in large part as the result of reading your authoritative, scrupulously careful yet open-minded and — given the conventional wisdom — often bold contributions to the space. It has truly been heartening to find that practitioners of your caliber and influence are looking carefully at these issues.

    Evidently (the widely read) David Brooks has taken notice of Whitaker and others’ concerns about the state of psychiatry. In addition to the Sydney award piece, as editor of this year’s edition of Houghton Mifflin’s best selling “The Best American Essays” series, Brooks included among 25 selections Marcia Angell’s review of Whitaker and others in her New York Review of Books essay “The Crazy State of Psychiatry.” See https://www.kirkusreviews.com/book-reviews/david-brooks/best-american-essays-2012/ and http://www.nybooks.com/articles/archives/2011/jun/23/epidemic-mental-illness-why/?page=1

    I am hopeful that others similarly in the mainstream will take notice, and force a wider national dialogue.

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  6. Thank you.
    Marcia Angell’s writings on the influence of the pharmaceutical company on the practice of medicine including her book, “The Truth About the Drug Companies” are extremely important. She wrote from a position of enormous power and influence as the (first woman) editor of The New England Journal of Medicine and a faculty member at Harvard Medical School. She is a hero of American medicine.

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  7. I have gained from you being here, in particular learning that there are psychiatrists that really do care about the people they are assisting and the wider industry in which they work. Thankyou for being so open.

    I do however have to comment on people not wanting help. I do not believe that people truly do not want help. They just fear what is being offered and in most cases that fear would be very grounded. Many of them would already have experienced some of the system in some way, even if just via school counsellors and most of those experiences have not been positive. In most cases the not wanting help, is about the most rational thing about them. It is grounded in very real and justified fears if they have had any contact at all with the system before.

    I also liken it to a a child learning to walk. You cannot make a child walk, and despite all the millions of things we do to try to make them walk earlier they all fail, and they continue to walk at about the same age. We just have to wait and be patient and let them develop at their own rate. It is the same here. People will be ready when they are ready. The most important thing is to be there for them, so that when they are ready to interact with you, you are there. Many have also experienced some form of violence, and for those it takes them much longer to trust someone.

    I will always be eternally grateful to a psychologist I saw some 25 years ago, who saw me, every week, for over 6 months before I would even tell her my full name, let alone give her a phone number, address or the like. Such things would not be allowed today where one has to complete a whole intake form before they would consider even making an appointment. Her response was to see that I needed the service more than most due to my fears. Her ability to be with me, and wait for me, was what enabled me to make the changes that I needed to make. Unfortunately I only saw her for 2.5 years and ended up in the menatl health system not long after that. Now the mental health system is all that exists.

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    • Thanks, Belinda. Yours is an important story.
      I am talking about people who do not indentify the problem as a personal one. The typical scenario is where parents are concerned but the person does not believe he has a problem (and it is almost always a he). He may be using drugs, he may be extremely withdrawn, he may be hostile, he may think that there are outside forces conspiring to harm him, he may bring himself to the attention of the larger community by acting in ways that do not make sense to others.
      I like Open Dialogue because it does not require any “buy in” to a notion of mental illness (on anyone’s part) nor does it require any one to be indeitifed as a patient. I am just sharing my early views that this work is hard (at least for me).
      Many people on this site talk about the benefit of the journey through times of extreme distress. I respect that but it is not the same story that the people I work with tell. Watching someone go through that experience without a road map or assurance of outcome can be daunting.

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      • I really admire your strength for continuing to do as you are doing. I do respect what you are saying, and I also respect that the people you are talking about do not yet see it as a problem. Given all that you have been trained and taught over decades it would be incredibly difficult to do as you are doing, and it would continue to go against everything the community expects of you. I can also imagine that families want a very quick fix, and that would make it even more difficult, as they have been led to believe by the media that a quick fix is possible, that a simple pill can fix these problems.

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        • A simple pill can be effective in the short-term. Especially for family members who find the patient’s behavior annoying and embarrassing. By over-riding natural brain functions the drug can make the patient quiet, submissive, and too tired to do anything but sit in the corner and drool.

          Once my dad was making fun of a guy we knew. He would often quit his downers or “antipsychotics” and then get a psychotic high or “mania.” He would complain that the drugs hurt his creativity.

          I turned to Dad and said, “You know Dave was right. Destroying creativity is how the pills work.” He nodded silently and looked grave.

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      • If such persons do have a problem, then that is their business until they accept the offer of guidance, and without the customary extortionary measures resorted to by institutional psychiatrists. This is not so much aimed at you Miss/Mrs Steingard (although you are implicated in this as someone who, as a heteronomous psychiatrist, sometimes simply has to play the tune you’ve been paid to play, after all you are a captive of a system that moulds your thought and practice, at least to some degree, and not the other way round) as it is at the more fanatical believers in the faith of messianic psychiatry.

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        • I do not disagree but people come to my care when they have made their concerns the business of others. For instance, they may insist that others act on their beliefs (telling the neighbors to stop talking out loud about them or insisting the the police investigate the situation and then getting angry when the police are ot able to confirm their story). I have had a number of patients who talk out loud to the voices they hear. They are not a danger to themselves or others but I am asked to intervene because the loud talking – sometimes through the night – is disturbing to others.

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  8. Sandy, it is great to hear about how much Whitaker’s work and MIA mean to you. I found MIA about 7 months ago and am similarly grateful for all that I have learned and in being encouraged to stretch my thinking beyond my own constraints.

    It is a remarkable thing about the human condition, that regardless of current circumstances of age and stage in life, we all have an inherent capacity for growth and change. Acceptance for uncertainty is part of everyone’s journey (as the American proverb goes, “There’s nothing certain but death and taxes”).

    As heartening as the thoughtful conversation and “big tent” debate is at MIA, I look on with muted horror as I pick up my daily metro newspaper that did a special six part series this year on the urgent need for more mental health “treatment”. It actively promoted skewed and misguided notions about the “severely mentally ill”. Now with Sandy Hook, my local paper seems to care as passionately of little else than it does for decrying more investment in mental health services.

    Will Hall has been active in alternative mental health education for over a decade and his Madness Radio is going on into its 7th year– yet he goes without funding because he is not seen as conventional/mainstream. His Kickstarter campaign will be all for naught if it doesn’t raise another $1000 in the next 16 hours.

    Sandy, if you have personally benefited from your participation here at MIA, would you consider pledging to a fellow blogger, Will Hall, and his important work at Madness Radio? Please visit http://www.kickstarter.com/projects/madnessradio/madness-radio-book-and-new-episodes to learn more.

    Thanks,
    Emily

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  9. Sandra, your article is very encouraging to me. I have an adult daughter who seems trapped in the mental health system due to having been placed on medications that i believe have put her in a terrible double bind: either continue on them and continue to suffer terrible side effects (which will probably worsen and even shorten her life) or attempt to taper and run the risk of withdrawal psychosis and more traumatic hospitalizations. I share your positive sentiments about Whitaker, Open Dialoque and some winds of positive change in NAMI (i would add the election of Keris Myrick as president)–it is so good to hear these words coming from a psychiatrist, who hasn’t given up on therapy! We need many, many more like you.

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    • Thank you Sandy!

      Mother Bear welcomes families seeking wellness-based (not illness model) recovery education support. We also welcome shifts in existing mental health support networks toward a more healing, diverse and safe therapeutic supports and education for families and individuals.

      I am also personally grateful for your thoughtful balanced blogs, your public vulnerability and willingness to question, and your compassionate replies to readers.

      I look forward to another year of reading and sharing your blogs!

      Warmly, Jennifer

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  12. “Engaging with someone who is in distress but is not interested in getting any help remains the the biggest conundrum for me.”

    Sandy, as my son struggles with prescribed drugs, I have the same dilemma. There are many things we wish to control but cannot. Sometimes, believing that we should control is part of the problem. Most of the times, your ability to help will depend more on your human qualities than on your medical formation.

    MIA has been a great help to me this year. Your contributions are appreciated.

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    • Maybe it’s the, “Engaging with someone (who does not want help,” that is the helpful thing?

      Maybe it’s the establishment of some kind of trusting relationship, no matter how small, that is where the help comes from.

      In my experience to be with someone who is very distressed is an act of bravery and it is an act of bravery for the distressed person to heal.

      Sometimes just hanging in there is where that healing starts – painful though that might be.

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        • Indeed, very hard sometimes. When helping a friend of mine who had 8 different diagnosis and had been in the system for about 7 years before I met him I needed to talk about him with two different people every week for months just to keep me engaged.

          He did thing like chucking the TV out of the window at 2am. Wen I went to visit him he would moodily stare at the computer screen for half an hour while I sat there feeling uncomfortably trying to think of something, anything, to say that might conceivably relate to him, his state of mind, his history or anything else about him or how we were getting on but which would, hopefully, not offend him.

          Oh my, it was a struggle.

          But now, on the whole, he is doing fine. He is studying for a degree, has a small business and has some friends. He recently got distressed and, “Odd,” when he wanted to be completely sane and achieve all those things he was planning to do before his original breakdown. As if these things happen all in one fell swoop

          But barring accidents I expect he’ll get there. I hope so.

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  13. Thank you so much for modeling the transformation of idea and practice and thank you for noting some of the more positive media that has been generated over the past year.

    It is is easy to only catch the worst news and to lose sight of the voices that are, slowly but surely, bridging dialogue and generating consideration.

    I actually have a lot of faith in intelligent and compassionate people to recognize the potential of humanistic approaches and reading your reflection reminds me again how vital it is to meet people where they are at and to honor the efforts they make toward a better understanding.

    Thank you for being a kind and informed voice of reason from the ranks of the professionals.

    We are all living and learning.

    I am glad that there has been progress made in the form of acknowledgments that brain-based explanations and medication are not the end all be all. However, as a person who is deeply aware of the fact that millions of people are being harmed and misled by disease-model constructs and treatment, I do not understand why we (those vulnerable to coercive and forced treatment) have to wait for the professionals to figure out a better way to think about what might be best for us or why they even have a right to think anything at all about what might be best for anyone other than themselves.

    People who have earned the right to diagnose and treat and people who have won their way to positions of influence have a responsibility to do no harm. While I’m glad that people are coming around, I wish they’d recognize their responsibility (to people they serve, their society, and the ethical integrity of their profession) to hasten the transformation.

    The disease model is alive and well. Right now, people’s lives are being wrecked by malfeasant psychiatric intervention. It’s lovely to watch the slow unfolding of ideas and realization, but I don’t particularly feel comfortable with the thought of psychiatrists and traditional advocates taking such sweet time in figuring out how to best uphold their oaths and missions while their colleagues continue to participate in practice that has been shown to be harmful.

    The time that is being taken can be measured in the futures of children.

    I am grateful that you have chosen to share your voice, insight an expertise here.

    Here’s to a transformative 2013!

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  15. Hi Sandra, I am new to MIA, not because I wasn’t aware of the site, but because my life circumstances have prevented me from being involved.(And even now my time here is highly limited.) But from what I read, it seems that you are not only personally growing and changing as a result of your experience here, but you are helping others do so as well.

    In reading your post, there is something you said in your original post and then commented on a bit, in response to a comment related to it, that jumped out at me. You said–

    “Engaging with someone who is in distress but is not interested in getting any help remains the the biggest conundrum for me.”

    I would really appreciate, if you are willing, you talking more about why you feel this way? My own experience is really completely the opposite. I have never met any one who is not interested in feeling better, healing, moving forward. My experience is that people in pain, want to be out of pain. Always. But people sometimes think this is not the case because people may not want the specific “help” that is being offered, for one reason, because what is being offered. lso there are likely as many other reasons as there are people.

    I would really appreciate hearing what makes you feel this way, especially because you identified this remains the biggest conundrum for you.

    Kathleen

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  16. Oh goodness, I apologize for my messy comment. Hopefully I have cleaned it up a bit, below!

    Hi Sandra, I am new to MIA, not because I wasnā€™t aware of the site, but because my life circumstances have prevented me from being involved. (And even now my time here is highly limited.) But from what I read, it seems that you are not only personally growing and changing as a result of your experience here, but you are helping others do so as well.

    In reading your post, there is something you said in your original post and then commented on a bit, in response to a comment related to it, that jumped out at me. You saidā€“

    ā€œEngaging with someone who is in distress but is not interested in getting any help remains the the biggest conundrum for me.ā€

    I would really appreciate it, if you are willing, you talking more about why you feel this way? My own experience is really completely the opposite. I have never met any one who is not interested in feeling better, healing, moving forward. My experience is that people in pain, want to be out of pain. Always. But people sometimes think this is not the case because people may not want the specific ā€œhelpā€ that is being offered.

    I would really appreciate hearing what makes you feel this way, especially because you identified this remains the biggest conundrum for you.

    Kathleen

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  17. Hi Sandy, As a Vermonter I feel proud that you are here in my state. I wrote to you awhile back asking for help finding a doctor who would help me detox. Wrote about your response – that there was no such animal – in my blog. Sorry if I hurt your feelings, you are obviously brave and open-minded. Change Happens!

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  18. Thanks for your comments. I have known people who are convinced, for example, that people are talking about them and plotting against them. They see signs of this everywhere and hear people – who no one else can hear – confirming this belief. They are looking for someone else to confirm their experience and when family members can not confirm it (because this is not their reality at the time), they believe thier family members are part of the plot. This can lead to much anger and turmoil in the family.
    I have known others who stop functioning – bathing, working, for example – but do not feel in pain or believe there is a problem. Not infrequently, drug use is involved and the person has no desire to stop using. Their families do not want to leave them in this state but these individuals do not want any help in caring for themselves.
    I am not saying here that there is no way to be of help, I am saying that the path is not always clear and while traveling that path with the family and individual it can be hard and scary. Of course, I would be interested in your and others perspectives on this.

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    • I don’t know anyone currently who is displaying such difficult behaviours but I know someone who often feels suicidal. I later discovered he had moved quite a few steps towards this. He said he was not brave enough to do it, I said that perhaps it was more brave to not do it, luckily he agreed. He used to not want to talk about himself or anything else when he was distressed. Then he was able to do this. But from time to time, no matter what I say, he says, “But I don’t want to get better.” I don’t live in the same town, so I talk to him on the phone. It has been very frustrating and difficult.

      He is getting better and is involved in a self help group and considering therapy. This gives me more hope for him in the long term .

      I have a client (I’m a gardener) who is an agoraphobic hoarder with a very limited diet. His physical health is diminishing. The services provide shopping and other stuff but do not help address his psychological problems. They are mainly patronising and try to push him into tidying up the house or other stuff that he may not really want. I often listen to him moan about the services for about 20 minutes before doing his garden.

      I happen to know he has two estranged brothers and that he lost important family members before the agoraphobia set in. He refuses counselling but perhaps if social services had a more relationship building/open dialogue/psychology approach and did not keep the boundaries between their services so strict he might have been helped before his health deteriorated so badly.

      I’m just a gardener who has a lot of distressed friends but if I was a professional I would be doing what you are doing, “travelling that path with the family and individual.” That seems to be what Open Dialogue practitioners do, but they do it in teams of two to three and they meet for about an hour and a half, every day for up to two weeks in cases as difficult as the ones you have described.

      I’m not surprised you find it hard and scary!

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    • You say you have known people who are convinced people are talking about them and plotting against them. The problem is that no empirical investigation is done to see whether or not the individual really is being persecuted.

      In all paranoia there is a grain of truth. A human being’s view of the world is the end of product of his experiences and the complexion he has given those experiences, a complexion itself informed by experience. In being paranoid, that individual is likely showing fidelity to his experiences of an unjust world.

      Paranoia isn’t neccessarily a bad thing, because it sensitizes us to danger in a dangerous world.

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      • I do not dispute this and I have at times acted in an investigative manner to the extent that I can. Someimes I just tell people that I am not sure what is going on – many things are beyond me. Sometimes it comes down to an issue of plausability and I try to be honest that this is not the same as proving something to be untrue. I agree that there is often some truth and I would add that it is important to try an understand that grain and acknowledge it.

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      • Being bullied, sexually harassed, and gossiped about in high school is a good explanation for the paranoia I had as a college freshman. No psychobabble about bad dopamine levels needed!

        Now I realize I have been lied to and damaged by unnecessary “treatments” for 25 years. And my reputation has been ruined. All by people (either clueless morons or creeps) who claimed to want to help me.

        I feel another attack of paranoia coming on….

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  19. Hi Sandra; I don’t typically comment on blogs here or anywhere else but today wanted to first applaud your efforts to open that dialogue about full informed consent about the drugs. I agree – people should have a choice and in the traditional model there has been no choice because there has not been true informed consent.

    The other point I wanted to address is the one about “blaming” vs being responsible for our today and our life outcome. And yes – shifting from the complaining and blaming that is typical in those who deal with these issues is vital. Yet, those who have been wounded do need to be heard vs dismissed in order to get past self blame and shame that lends to being incapable of owning ones “today” and can be the crux of the real issue. Learning to see ones self as capable today often means being able to have the past, when one was a blameless child, validated. Often in “therapy” that issue is completely dismissed yet it is in not “blaming” family of past traumas and wounds but making them “responsible” for how their behavior affected one and that the client has a right to feel angry at what was done to them by parents/family/society/providers who may have done the best they could but in the end the individual was harmed.

    I’m not talking about “blaming” I am talking about finally validating the wounds caused (even though perhaps unintentional). We each need to be responsible for what we do that results in harm to another that they might heal the resulting wound. Learning to no longer be a perpetual victim is possible but by denying our pain, insisting on that “stiff upper lip”, learning to stuff our anger and swallow our grief is perhaps at the root of much angst and what today is called “mental illness”. We see this in the acting out toward others and the acting in of self harm (anger) or the unresolved grief as we escape through shutting down in one way or another that is carried a lifetime if one is not validated, heard and allowed to express their pain and be heard. Denying and stuffing ones feelings has great consequences, as we know.

    So yes; I agree. It is time for the perpetual victim type blame game to end in the owning of our todays. Yet – for the past to stop influencing today it needs to be made sense of; victims of past abuse, neglect, psychological, emotional and physical abuse need to be allowed to feel their justified anger and grieve the losses of a life not lived in order to start seeing themselves as the creator of the life they deserve and often desire.

    Thanks again for what you are doing to bring awareness to these issues.

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    • Great comment, Susan. This is one of my biggest pet peeves – victims constantly being pressured to “stuff” their hurt, trauma, violation, anger, etc. – it is inappropriate. Pressuring people to forgive & absolve, too soon. The anger & grieving & responsibility being placed where it belongs – this is all a key part of healing. If people truly have been victims then we should allow them to act like it until they are truly ready to move on. We do the same for rape and natural disaster victims; trauma is trauma.

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  20. I, too, just recently found this blog and delight that it is exists to raise the consciousness on mental ‘illness’ in America. I have a radio show, A New View of Life, and invite you to contact me to be on the show. This topic has my devotion in 2013. [email protected]. The Good news is we are moving forward and upward. And as to those who are in distress and who do not want help, eventually they will.

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  21. Sandra, thank you for taking the time to respond. I too have met people experiencing the same kind of things you describe, making the same kind of choices. I have never thought they didn’t want support, though. I think one of the issues is that often people are offered (an that is putting it nicely, sometimes it isn’t only offered but painfully and forcefully given) “support” they don’t want, are afraid of, and/or they feel won’t help. I think engaging people and inspiring people can be a wonderful beginning to healing. This doesn’t require any agreement on the source of the pain, any agreement on what to do about it, any agreement on…. anything. It means setting judgment aside, not assuming people don’t want support based on anything you are observing or because you don’t yet know what to do. I have met thousands of people experiencing/living as you describe. And I have seen thousands of people make meaningful and lasting change, simply as a result of being treated with respect, love, and a belief in their unique potential. Albert Schweitzer talked about activating the healer that resides within. I think we can all do that for each other. Even if we have no idea what to do for someone, what we feel they should do, or how things can possibly work out. If we meet them where they are, treat them with respect, seek to build a relationship with them, and seek to inspire them, truly amazing things happen. And it is, frankly, just so much easier and so much more enjoyable than stressing out about what in the world to do. Inspiring people to solve their own problems, and make their own best choices works best for everyone, in the long run, I believe. I appreciate you openly sharing your journey here, and appreciate there being a site for all kinds of discussions and respectful disagreement. We can all keep disagreeing, agreeing and learning from each other, and changing our minds together, which is really nice.

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  22. Dear Dr. Steingard,

    I am glad that Bob’s work has influenced your perception of mental health care.

    I hope that you will continue to listen closely and evaluate carefuly comments and information Bob shares throughout his work, lectures and online interviews.

    During one interview Bob states that it is an “inside joke” among those who have been diagnosed “mentally ill” that on average our life expectancy is 25 years less than individuals who are not in the mental health care system.

    Personally, I thought this comment was in bad taste as I have been on psychiatric medications in the past and suffered horrific and life-threatening side effects. I have been under the care of psychiatrists who failed to consider underlying medical conditions, failed to review results of tests they ran and ignored physical signs of illness in lieu of labeling symptoms as “mental illness”.

    At one point I was told by 3 different psychiatrist during a 5 month period that I was depressed. My only complaint was that I was so tired I could not get out of bed and I felt like I was dying.

    Finally after telling my mother about my symptoms she immediately assumed that it was probably my thyroid. I looked into the thyroid connection and knew she was right. When I went to my primary care physician and requested a test, she acted like I was a hypochondriac. My TSH level came back at 147. It took two years of adjusting thyroid medications before the primary care physician finally referred me to an endocrinologist for further testing.

    If you get a chance please re-read page 80 of Mad in America which states “scattered reports in the scientific literature, dating back to 1876, of insanity being cured by the removal of infected molars or cuspids. From this initial site of infection, he reasoned, bacteria could spread through the lymph or circulatory systme to the brain, where it ‘finally causes the deeath of the patient or, if not, a condition worse than death – a life of mental darkness”

    Doctors at the National Integrated Health Associates, NIHA, in Washington, DC are having success treating symptoms considered “mental illness” with Integrative Medicine and biological dentistry.

    I posted a video to the ISEPP blog yesterday that demonstrates a mother’s frustration dealing with mental health professionals who failed to recognize adverse reactions to Haldol given to her son who suffers from symptoms considered autism.

    It is very sad to know that our mental health system is so failed because people fail to listen to eachother.

    Thank you for taking the time to listen

    Kind Regards,
    Maria Mangicaro

    http://isepp.wordpress.com/2013/01/04/in-light-of-the-sandy-hook-massacre-support-is-warrented-for-isepps-call-for-a-federal-investigation-into-the-link-between-psychotropic-drugs-and-mass-murder/

    Posted on Mad in America dot com 1/5/2013

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    • Iā€™m not a Whitaker apologist, but I do consider him a friend. You seem to be insinuating heā€™s not consistent or sincere in what heā€™s been saying and we should all watch/listen to him closely for heretical behaviors.

      Iā€™ve had the discussion about shortened life expectancies with Bob and heard him discuss it with others. Heā€™s outraged that mainstream media and systems of so-called care donā€™t take this data seriously. Bob is also tracking studies that show the shortened life spans for those beginning these drugs at younger ages, 4, 5, 6 years old. Heā€™s not happy or making ā€œjokesā€ about that either.

      I think you must have misunderstood the context of his comments because I canā€™t imagine Bob ever making a joke about the ravages of long-term psychiatric drugs.

      Of course Bob is mortal and makes mistakes so someone has to stand behind him and whisper “Memento mori” lest all this acclaim go to his head! I guess thatā€™s you Maria so thanks too.

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      • If you or Dr. Steingard have handy and can post something listing and/or summarizing the data on mortality in psychosis patients I would appreciate it. I’ve read Whitaker’s Anatomy of an Epidemic — is its discussion on mortality comprehensive?

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      • Dear David,

        Before proclaiming myself a “mental health advocate” I obtained a paralegal certificate, a bachelor’s degree in legal studies and a mediation certificate. I carefully selected the courses to supplement my goal of becoming an advocate.

        I take advocating on the behalf of others very seriously.

        I have experienced and witnessed first hand how our broken and flawed mental health care and criminal justice systems contain a tremendous amount of unnecessary suffering for many, and an enourmous amount of profit for others.

        I scrutinize information that has the potential to affect changes in our mental health care system very carefully, to the point of reading between the lines of the fine print.

        In his review of Anatomy of an Epidemic, Dr. Torrey wrote this:

        “In its 396 pages Whitaker got many things right, including criticism of the broad DSM diagnostic criteria for mental illnesses; the reckless prescribing of psychiatric drugs for children; and the prostitution of many psychiatric leaders for the pharmaceutical industry. Indeed, regarding the last, Whitaker may have understated the problem, based on recently released court documents detailing how the pharmaceutical industry secretly controlled the Texas Medication Algorithm Project.”

        Does anyone else on this site see reason to celebrate Dr. Torrey’s review?

        I am not insinuating Bob is not consistent or sincere in what heā€™s been saying and that everyone should all watch/listen to him closely for heretical behaviors, I am stating he is inconsistent and that yes, please pay close attention to his lectures/presentations available on youtube.

        If you have any doubts, I can provide many examples.

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        • Maria,
          Thanks for responding. Dr. Torrey’s review had a lot of information in it, not just the quote you provided. Bob did a lengthy rebuttal on his blog here. Surely you agree that some of what Torrey said was viewed as factually correct while other portions were not correct? I think we all celebrate truth, so to the extent Torrey’s review was truthful, great! It’s not an all or nothing proposition. I’m not sure how to approach your last statement. You assert Bob IS inconsistent and can provider “many examples.” I feel the need to defer to Bob, Kermit or whomever to decide whether this is the proper forum to dialougue about Maria’s assertions. Maybe if you gave just one example of how he is inconsistent, we can start there?

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          • Dear David,

            Thank you for opening this dialogue with me in the Mad in America community.

            This turned out a lot longer than I expected and I hope it makes sense as I put it together in a bit of a hurry.

            The information in “Why Psychiatry Embraced Drugs: An Interview with Author Robert Whitaker” is one example of Bob’s inconsistency and apparent cluelessness.

            Here is the link.

            http://motherboard.vice.com/blog/why-psychiatry-embraced-drugs-an-interview-with-author-robert-whitaker

            In this interview Bob states:

            I made a little joke in the book about psychiatry secretly funding scientology, but really, it couldnā€™t have worked out better for the pharmaceutical companies and biological psychiatry. The reason is that, of course, it delegitimizes criticism. The fact that scientology is so visibly attacking biological psychiatry and attacking psychiatric drugs delegitimizes all criticism. Scientologists clearly do have a cult-like status and they clearly do have an agenda. The fact that theyā€™re so visible makes it very easy for psychiatry and pharmaceutical companies to say, ā€œThis is just criticism coming from that crazy group.ā€

            Some of the stuff, theyā€™ve gone into the data and theyā€™ve brought out some information. Because it was scientology and CCHR that was out front with the criticism and raising questions and raising accusations that these drugs were causing suicide and violence, just made it really easy for pharmaceutical industry and Eli Lily to have it dismissed. If we didnā€™t have Scientology. Imagine it doesnā€™t exist and thereā€™s no such group raising criticism. The questions around whether Prozac can stir violence or could cause someone to become suicidal or homicidal would have had a lot more traction.

            The Citizens Commission on Human Rights is a nonprofit organization that was founded in 1969 by the Chruch of Scientology and Dr. Thomas Szasz to “investigate and expose psychiatric violations of human rights and to clean up the field of mental healing.”

            While CCHR was founded in part by the Church of Scientology, membership is open to all individuals, regardless of religious beliefs.

            Apparently during this interview Bob’s arrogance took over and he apparently forgot about the efforts of MindFreedom, PsychRights, ISEPP (formerly ICSPP) and many other nonprofit organizations and groups who have been speaking out for decades.

            He is apparently clueless to the fact many mental health and medical professionals have risked their reputations and license to practice for the sake of providing safe and effective alternatives to mental health patients.

            Nice of Bob to formally lump us all together as the “crazy group”.

            By the way, that “crazy group” CCHR has helped inform and support a countless number of individuals including Maria Bradshaw and Amy Philo. CCHR gives a voice to those who no one else seems to listen to.

            CCHR’s accomplishments include documenting thousands of individual cases that demonstrate psychiatric drugs and often-brutal psychiatric practices create insanity and cause violence.

            Bob should learn more about CCHR first hand before he criticizes this organization or places blame on the Church of Scientology for the ignorance that delegitimizes all criticism of psychiatry.

            Tom Cruise is the ONLY well-known celebrity that has ever spoken out against the harm of psychiatric medications.

            Personally, I don’t care what church Tom Cruise Mapother belongs to, or how many times he gets married/divorced, or what kind of crappy movies he makes, the day he spoke up on the behalf of people being harmed by the overuse of psychiatric medications and the benefit of safer alternatives, is the day I became his number one fan.

            If anyone wants to criticize members of CCHR as mental health advocates, they better have a list of accomplishments that outshines what CCHR has done.

            Here are several points that I would like to make:

            1. Please know that I am very understanding towards Bob’s position as a journalist doing his job which involves a “shades of gray” balancing act.

            It is important to realize that Bob does not have the same perceptions as an individual who is an advocate seeking change for unjust policies, procedures and practices in our flawed, broken and failed mental health care system.

            Bob has no experience being part of our mental health care system and at this point I doubt he has ever even taken a basic course in abnormal psychology, so I would not expect him to have the same perspectives as those of us who have. His work reflects the fact that he has no knowledge or comprehension of Orthomolecular concepts/Integrative Psychiatry/Disciplines of Psychology and he focuses his criticism on main stream psychiatry.

            In correspondence with Bob, I have always used thoughtful comments as personally I do not think he handles criticism very well and there are many factors involved in the strong critic that I hold towards his efforts in the mental health arena. I explained some of them to him during a phone conversation in October of 2010.

            2. The mass shootings in our country have pushed the topics of “mental illness”, psychosis and violent criminal behavior to the forefront of our national concerns.

            Blame for the problems in our flawed mental health care system lies in the schizophrenic nature of mental health advocacy. Advocates need to find ways of getting on the same page with each other. A divided advocacy agenda is futile and will not succeed.

            It is time for mental health advocates to clean house, straighten out their messages and create a clear, concise, uniform advocacy agenda to present to policy and law makers.

            3. Our contemporary society suffers from “Walter Cronkitis”, we expect journalists to take the lead to sort through and spoon feed us the conclusions of large amounts of important information that we do not take the time to learn about, analyze and evaluate for ourselves.

            Journalists and the media have the ability to easily persuade their audience through their storytelling abilities. Bob is very knowledgeable and has a lot of charm.

            The reason why Dr. Torrey and Bob agree on the following statements is because they are UNDISPUTABLE FACTS that all mental health advocates should agree on:

            “Whitaker got many things right, including criticism of the broad DSM diagnostic criteria for mental illnesses; the reckless prescribing of psychiatric drugs for children; and the prostitution of many psychiatric leaders for the pharmaceutical industry”

            We should not nit-pick any other details, we need to focus on the FACTS and confirmed problems.

            The focus should be on working together to fix these problems.

            THE RECKLESS PRESCRIBING OF PSYCHIATRIC DRUGS FOR CHILDREN.

            LET’S MAKE THIS A PRIORITY!!!!

            There is only one mention of Keā€™onte Cook on this site, there is no mention of Rebecca Riley and no mention of Gabriel Myers. This is a shame!

            4. Bob put a lot of time and effort into learning about the problems in our mental health care system and about the treatment of psychosis.

            So, what are his conclusions for the treatment of psychosis?

            Individuals suffering from psychosis and mania are among our society’s most vulnerable and marginalized population.

            Many are in psych wards, the criminal justice system or homeless.

            They do not have access to the internet and they do not have a voice for advocacy agendas being formulated within internet communities.

            The Mad in America website is a place of public accommodation to discuss the treatment and advocacy agenda for those suffering from symptoms of psychosis, but excludes individuals suffering from those symptoms.

            Bob may not consider himself and a mental health advocate, but if we consider the definition of advocate: “A person who publicly supports or recommends a particular cause or policy.” he is acting in the capacity of an advocate.

            He also was one of the founders of the FEMHC.

            In his C-SPAN lecture Bob makes his concluding statements very clear.

            My interpretation (summarized) of his his beliefs regarding the treatment of psychosis are:

            – the research supports short term efficacy of antipsychotics and long-term chronicity

            – the comparison research from 1945-55 involved treating psychotic episodes with hospitalizations that lasted between 12 months and five years.

            – his book is not a medical advice book and does not encourage patients to go off of medications (although some psychiatric patients have gone off medications after reading Anatomy)

            – he believes psychiatric medications have a place in mental health care

            – Anatomy of an Epidemic does not take an anti-medication position and is in fact a ā€œpro-medā€, best use practice

            – when considering psychotic patients, some will do better off meds, while others do better on meds

            – he believes the psychophramacology paradigm is a failed revolution

            – psychotic episodes have flu-like characteristics of coming and going on their own, treatment with medication is the best approach to quickly stabilize (PERHAPS, MAYBE, ONE COULD CONCLUDE THAT THE FLU-LIKE CHARACTERISTICS OF PSYCHOSIS ARE BECAUSE IN SOME CASES IT IS CAUSED BY A VIRUS, BACTERIA OR TOXIN, and IN SOME CASES THAT TOXIN IS A PSYCHIATRIC MEDICATION)

            – his appeal is to create a national discussion that incorporates the long-term data

            Bob has a much different perspective in this video and he states quite clearly that youth doing marijuana are at increased risk of ending up with bipolar labels when they show up with what looks like psychiatric symptoms.

            http://wellnesswordworks.com/maria-mangicaro-check-for-physical-causes-of-psychiatric-symptoms-first/

            He also states he believes more than 50% of those labeled with mental illness entered the system starting from the use of illegal drugs. He states he did not realize this when he wrote Anatomy of an Epidemic.

            Best Practice assessment of psychotic symptoms is the most ethical standpoint an advocate could take. Why would we want to overlook a medical condition or a substance causing psychosis, especially when that substance could be a psychiatric medication that induced a psychotic episode resulting in a parent killing their own child, like Ryan Ehlis, Dena Schlosser, Otty Sanchez, Julie Schenecker and David Crespi.

            5. Because Mad in America, Inc. is a business that supports a plethora of writers and diverse opinions, journalists seeking information on the topic of “mental illness” will use the Mad in America website as a resource.

            In my opinion, Bob should have a clear-cut statement of what his conclusions are on the Mad in America website from his journalistic perspective.

            As is, the Mad in America website is sending out convoluted messages to the media.

            Without a clearcut commitment to an advocacy agenda, this website and has the potential to contribute to poor outcomes in advocating for the rights of some of our society’s most vulnerable population.

            Mad in America, Inc. needs to remedy a situation that currently has the potential to cause harm to patients in our mental health care system.

            6. Bob did a great job starting up the FEMHC. The Foundation received a $2 million dollar donation right off the bat from a single donor.

            It would be nice if Bob spent some effort trying to raise money for nonprofit organizations that have existed for many years and have successfully helped individuals suffering from mental/behavioral/emotional conditions.

            Some examples that I am particularly fond of are:

            The Delancey Street Foundation

            Quantum Leap Farm

            The Rescue Mission

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          • I had some additional comments to the information below

            – the research supports short term efficacy of antipsychotics and long-term chronicity: PERHAPS, MAYBE, JUST MAYBE THAT IS BECAUSE IN SOME CASES OF PSYCHOSIS THE EFFECT OF SEDATION GIVES THE BODY AND BRAIN A CHANCE TO HEAL FROM AN UNDERLYING MEDICAL CONDITION SUCH AS A VIRUS, BACTERIA OR TOXIN

            – the comparison research from 1945-55 involved treating psychotic episodes with hospitalizations that lasted between 12 months and five years. HELLO???? THAT WOULD BE VERY EXPENSIVE THESE DAYS….LOOK INTO THE COST OF COOPERRIIS I THINK IT IS AROUND $17,000 PER MONTH, A MUCH BETTER APPROACH EXISTS IF MEDICAL PROFESSIONALS UTILIZED BEST PRACTICE ASSESSMENT STANDARDS AS OUTLINED IN THE BRITISH MEDICAL JOURNAL…THAT IS A RELIABLE SOURCE OF INFORMATION FOR MEDICAL PROFESSIONALS, RIGHT?

            – his book is not a medical advice book and does not encourage patients to go off of medications (although some psychiatric patients have gone off medications after reading Anatomy) AND ONE PERSON THAT I KNOW OF ENDED UP HAVING A PSYCHOTIC EPISODE RESUTLING IN A PSYCH HOSPITALIZATION

            – he believes psychiatric medications have a place in mental health care: NICE OF BOB TO GIVE SOME HOPE TO THOSE WHO DEPEND ON THEM FOR PROBLEMS LIKE CHRONIC INSOMNIA….IF A PERSON GOES MORE THAN 8 DAYS WITHOUT SLEEP THEY COULD HAVE A FATAL REACTION, SO YES, PSYCH MEDS WILL ALWAYS HAVE A PLACE

            – when considering psychotic patients, some will do better off meds, while others do better on meds: TREAT THE UNDERLYING PROBLEM AND THEIR CHANCES OF GOING OFF OF PSYCH MEDS WILL INCREASE

            – psychotic episodes have flu-like characteristics of coming and going on their own, treatment with medication is the best approach to quickly stabilize (PERHAPS, MAYBE, ONE COULD CONCLUDE THAT THE FLU-LIKE CHARACTERISTICS OF PSYCHOSIS ARE BECAUSE IN SOME CASES IT IS CAUSED BY A VIRUS, BACTERIA OR TOXIN, and IN SOME CASES THAT TOXIN IS A PSYCHIATRIC MEDICATION)

            I THINK BOB IS A PERSON WITH COMMON SENSE

            NO PERSON IS IMMUNE FROM A PSYCHOTIC/MANIC EPISODE

            IF BOB, OR ONE OF HIS LOVED ONES, EXPERIENCED A PSYCHOTIC EPISODE WHAT TREATMENT, IF ANY DO YOU THINK HE WOULD SEEK?

            OPEN DIALOGUE?

            MEDICATION MANAGEMENT?

            INTEGRATIVE PSYCHIATRY?

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  23. Thank you for your comments. I agree that the differential diagnosis for someone experiencing psychosis or fatigue is broad and should be considered carefully. I am sorry that it took so long for your thyroid condition to be adequately recognized and treated.
    I tried to answer the question you ask in some of my comments above,for instance in response to Belinda and I think also to Kathryn.
    Although I think it is important to look carefully for the cause of the problem, in my own experience at least, we frequently do not find an answer (of course this could be because we re not looking carefully enough so I will look at your links and remind myself to continue to think about broadly.)
    I do not take lightly the statistics about the shortened life expectancy for people who are diagnosed with psychosis. This is a major public health concern.
    Sandy

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  24. Maria,
    I appreciate the time and effort you put into your responses. Unfortunately, youā€™ve said so many things I canā€™t possibly respond adequately to even half of them! I donā€™t know how to proceed without unintentionally giving offense. Most of what you say I agree with. I read the interview you referenced and found no inconsistencies with what Bob has stated elsewhere. I personally agreed with his statements. Scientology is just one very prominent organization that has been demonized by mainstream psychiatry and Pharma. There are many others who speak truth and are minimized, ignored, etc.
    I like the different views on MIA. I donā€™t find it confusing that there are so many different messages and points of view being expressed. I think people are just very individual and our searches for ways to help each other are very individualized. There is no monolithic ā€œWAYā€ to solve the current mess we are in in my opinion.
    I boil down a lot of what Bob espouses to a simple fact: The benefits of psychiatric medications have been grossly exaggerated and the risks greatly minimized. In a nutshell, I think thatā€™s what Bob and many others are saying. What to do next is difficult, exciting and confusing. I hope you keep posting as your point of view is one of many I find helpful as we try to create a caring response to those experiencing distress.

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    • Ok,

      I admit,

      I have a lot bottled up and got pretty long winded.

      To Keep it Short and Simple.

      When it comes to symptoms of psychosis/mania

      First

      Foremost

      and Critically Important

      “Organic causes must be considered and excluded before the psychosis is attributed to a primary psychotic disorder.”

      That is a fact

      There is no arguing this point

      ALL MENTAL HEALTH ADVOCATES SHOULD AGREE THAT OUR MENTAL HEALTH CARE SYSTEM SHOULD NOT ONLY MEET, BUT EXCEED BEST PRACTICE STANDARDS

      WE NEED TO GET ON THE SAME PAGE WITH THIS

      Bob’s conclusions regarding psychosis make a lot of sense

      but they would make more sense if he incorporated the value and importance of testing for and treating underlying causes of psychosis/mania

      Following the BMJ’s guideline is the most ethical, most economical and most humane stragegy available

      It’s not rocket science, it is human anatomy and physiology

      http://psychoticdisorders.wordpress.com/bmj-best-practice-assessment-of-psychosis/

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      • You’re passionate Maria and boy do we all need that in this struggle. Thanks for distilling this down and, I’m not surprised, we agree. The organic causes you mention in addition to substance use, including things like lead poisoning, have to be ruled out before considering other possibilities. Beacuse, as you say, Neurologists, real doctors, know that there are a myriad of organic conditions that mimic so-called psychiatric symptoms. I also agree that I haven’t personally seen/heard Bob spend a lot of time on this aspect. Thanks again for sharing

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  25. I thought Yale and Harvard grads were too proud to admit that their education could be challenged. Thank you for proving me wrong Sandy. Coming out to alternative treatments, especially those that shun the big pharma industry could be a career ending move on your part. Thank you for your continuous support. You are one of Vermont’s most valuable resources and a champion for humanity.

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    • Analogman,
      My Harvard education was over rated although I value some of the life long friends I made while I was there. Mostly, it creates an expectation about me although one of my favorite lines is when someone (who had known for for awhile) said,”You went to Harvard? I didn’t know you were smart!”
      Thank you for your extraordinarily kind and generous comments.
      Sandy

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  26. Sandra Steingard wrote: “Engaging with someone who is in distress but is not interested in getting any help remains the the biggest conundrum for me.”

    The conundrum described could be resulting more from the perceptions formed about someone who appears not to be interested in accepting certain forms of “help” being offered or otherwise foisted upon them and the belief or conclusions made that they are in need of the same as well as, due to those perceptions, beliefs and conclusions, the need one might have to impose control, responsibility and authority over the person than anything else. No matter who might believe they are in the right or why they might believe so, resistance in such scenarios is a normal response or at least one to certainly be expected. If the need to control, take responsibility and impose authority can be completely set aside, along with the use of force and coercion in all its various forms, and true dialogue is put into practice and actual meaningful relationships are formed instead, then — even though it might take a long time and lots of patience to bring about — there will be a solid foundation and basis with which to work with and move forward. What also can help is changing the focus to be based more around a person’s self-expressed needs, interests, dreams, hopes and vision rather than what is perceived as their problems or even them as being a problem in need of being taken care of and fixed or otherwise continually maintained by those who believe they know better or best. This often works better in real world settings than it does in “clinical” or “therapy” type of settings. For example, one former mental health professional within the region I am aware of had worked with people outside the clinical environment and who were invited to participate with them on some backyard project or other activity elsewhere and, in doing so, the rest would evolve from there over time. It can go a long way when one meets a person on terms acceptable to them as well as in an environment either more neutral or safer and more comfortable to them. This can be learned by using either phone calls or face to face meetings with them and other members of the team. In addition and most essential in planting as well as nurturing seeds toward building meaningful relationships along these lines is letting go of the need to control and have authority of the person as well as taking responsibility of them no matter whether or not the law sanctions one to do so on their behalf and, potentially, there exists “the biggest conundrum”. If the person who is perceived of needing one’s help learns and can trust on a consistent enough basis that one is not trying to take anything from them or impose anything upon them, particularly for their own good, then one allows the possibility to build real trust and form true and meaningful relationships. It is the building and maintaining of such relationships and resulting trust as well as potential resulting enlightenment and healing on all sides of the equation that will prove to be key and should never be underestimated concerning the matters one is seeking to address. The rest, including whatever potential answers might exist, lie within the person and could eventually be discovered and employed if and when the supportive and nurturing environment exists to allow them to do so on their terms and according to their own sense of timing.

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    • i.e., … In addition and most essential in planting as well as nurturing seeds toward building meaningful relationships along these lines is letting go of the need to control and have authority of the person as well as taking responsibility *for* them no matter whether or not the law sanctions one to do so on their behalf and, potentially, there exists ā€œthe biggest conundrumā€. …

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      • Let’s try this again …

        i.e., ā€¦ In addition and most essential in planting as well as nurturing seeds toward building meaningful relationships *and gaining trust* along these lines is letting go of the need to control and have authority *over* the person as well as taking responsibility *for* them no matter whether or not the law sanctions one to do so on their behalf and, potentially, there exists ā€œthe biggest conundrumā€. ā€¦

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