Trauma and Schizophrenia:
The Ultimate Political Battle

93
1818

This weekend I attended an international trauma studies conference in Miami, Florida, where some of the leading researchers and clinicians in the field of trauma gathered to share their innovative projects and findings. I was excited to hear about the ongoing work to bring trauma-informed practices to individuals around the world and also, admittedly, to present some of my own work while having an excuse to visit my home state.  Although there were many worthwhile moments (Miami really is quite beautiful at this time of year), overall I left feeling paradoxically hopeful, saddened, inspired, and a bit dumbfounded.

Four days of panels and papers dedicated to the field of trauma, hundreds of individual presentations, and a huge gathering of some of the most compassionate, dedicated, and marginalized professionals in the mental health field provided quite the learning opportunity. Some of the more interesting material presented (in my personal opinion) showed:

  • That 1/3 of women experience childbirth as traumatic (Beck, 2009) with 10-20% reporting a traumatic stress response (Beck et al., 2011; Rojas, 2014)
  • How domestic violence can result in transgenerational changes in DNA in the children of the victimized parent even if the child never witnesses this violence(Schauer, 2014)
  • That childhood adversity (a term that circumvents the argument of defining “trauma”), including stress, poverty, socioeconomic status, education, parental stress, and diet is directly related, in a dose-response relationship with later physical and mental health (Schauer, 2014) and that when enough cumulative adverse events are experienced 100% (yes, 100%) of individuals will develop a “mental illness” (I guess there is finally “evidence” to the common sense notion that we all have our breaking point)
  • The effects of childhood trauma are unique and more complex when compared to single event, adult trauma, including dramatic alterations and difficulties in interpersonal relationships (van der Kolk, Ford, Spinazzola, 2014)
  • How DNA damage in response to traumatic stress (Schauer, 2014) can actually be healed through PSYCHOTHERAPY (Morath, et al., 2014)
  • How prevention of “mental illness” can nearly completely be heeded through interventions at the parental and systemic levels to reduce child abuse, discrimination, and poverty (Schauer, 2014; van der Kolk, Ford,  Spinazzola, 2014)
  • A dominating focus on brain and gene correlates of traumatic responses and the healing effects of trauma-informed therapy (biological difference does NOT mean healing has to be in the form of biology!)
  • How primary care giver attachment disruption is MORE likely to result in a traumatic and psychopathological response than physical and/or sexual abuse (with the combination having the worst results; van der Kolk, Ford, Spinazzola, 2014)
  • How the diagnosis of PTSD is very limited and does not capture the effects of disrupted childhood development and interpersonal trauma and…
  • The necessity of “human/child/woman’s rights [to be] at the core of counseling and therapy” (Schauer & Schauer, 2010).

One study after another was presented on “trauma-related disorders” and their associated treatments, yet there was not a single mention of schizophrenia or its related diagnoses. Four days of trauma discussion and the topic of psychosis was nowhere to be found. That is, of course, until I brought up the subject during a panel discussion on dissociation.

The focus of this particular panel was a broad attempt to integrate different perspectives and findings on dissociation. Very interesting research was presented, for instance: evidence shows that psychological trauma results in alterations of consciousness in the domains of time, thought, body, and emotion (Thompson & Zahavi, 2007; Frewen & Lanius, 2014). According to this research, as the levels of dissociation increase, a person is more likely to experience identity fragmentation and flashbacks/reliving (time), voice-hearing and confusion (thought), depersonalization (body), and numbing/compartmentalization (emotion). Additional research showed how trauma effects the brain and makes one more likely to become addicted to alcohol or benzodiazapines at a neurochemical level (too technical for me to fully understand; Kudler, Lanius, D’Andrea, & Rasmusson, 2014) and the association of specific genes related to PTSD and dissociation. There also was a lengthy discussion about how experiencing multiple traumas (unlike a single trauma) results in a shutting down response rather than hyperarousal and increased physiological activity. This includes: loss of emotion, loss of memory and language, shutting off of cognitive processing, deactivation of the brain, loss of physical sensation, social disengagement, miscommunication, and social withdrawal (McTeague, et al., 2010).

As I was listening, I found even my own ideas being broadened and put into question. More specifically, one of the longest standing agreed-upon ideas is that “negative symptoms” of “schizophrenia” are something separate from trauma and are non-dissociative. I must admit, I too have thought this, though likely for different reasons than many. Personally, I believe that so-called negative symptoms are usually a result of the long-term effects of neuroleptic drugs and hopelessness; they are, most often, iatrogenic. I have not changed my mind on this, but I realize now that just because it may be iatrogenic or drug-induced, that does not mean that it is not also dissociative. What I really was struck by were the findings showing how the higher one scores on measures of “dissociation,” the more the entire psychological and physiological systems shut down. For instance, those with scores indicating high levels of dissociation are far more likely than other traumatized individuals to have a decreased startle response, decreased sweating, decreased heart rate, decreased vision, decreased attention, decreased verbal response, and increased numbness.

This was information that I have read and seen in numerous different academic and clinical contexts, but this particular study showed a dose-response relationship; in other words, the more one endorsed “dissociation,” the more one also experienced these other phenomena. This seems logical to me, so my mind naturally followed the continuum to its end point. At the most extreme, I would think that such experiences, when deeply entrenched and long-standing, would appear catatonic to the outsider (this has also been explored by others, e.g., Moskowitz, 2004). But, step back from this a couple of notches, and these demonstrated phenomena sound an awful lot like lack of motivation, flat affect, monotone speech, blank looks, and lack of interest in the world (i.e., negative symptoms).

So, I got a little excited, thinking perhaps I was wrong and there was going to be some discussion of trauma, dissociation, and at least psychotic symptoms, if not “schizophrenia.” In fact, the word “schizophrenia” came up a couple of times, but only in dismissive passing and without elaboration. Thus, I dared to speak up. Since the topic was on integrating different perspectives on dissociation, I asked the entire panel to define what dissociation is to each of them. I explained that the presentation took for granted that we all know what “dissociation” is, but that I have found in my research and more informal discussions regarding dissociation and so-called schizophrenia, that the definition of dissociation changes and changes again in an apparent effort to make sure it never gets confused with schizophrenia. So, I asked the panel of experts (several of whom I was quite familiar with due to their “expert” status in this area) to define dissociation. Simple, right?

Suddenly and immediately the tension in the room became so palpable that I actually thought I might be physically ill. The panel appeared to be speechless and awkward laughter ensued, as if nobody knew quite what to do with my question. The first response was partially in jest, where one speaker stated: “You have to define it for yourself.” After this initial tension-breaking response, that I believe might have a had a little too much truth behind it, the panel became a bit more serious. The first panelist to respond stated that there is dissension within this very small group of thinkers (dissociation researchers) who are already marginalized, and that there is often argument over “who owns the definition of dissociation.” She was a kind woman and explicitly offered me solidarity (which I quite appreciated in that moment), yet she never attempted to provide a definition of dissociation. The next person responded by describing how important it is to recognize there is a clear distinction between dissociation and schizophrenia.

She went on to explain how “bizarre” delusions are different from dissociation and are unequivocally not related to trauma. So, at least in this case, the answer to “what is dissociation” was quite literally “not schizophrenia.”  The next panel member started talking about something so completely unrelated to my question that I am not entirely sure what she was talking about. Though, in all fairness, I may have been so taken aback by the previous response that I just was incapable of hearing what she was saying. The last person, who originally told me to define dissociation for myself, was the only one who attempted to answer my question. He spoke of the idea of dissociation being a vertical split (unlike suppression or repression where someone “stuffs it down”) in the psyche of emotions, self, and experience, which, on a side note, I happen to agree with. He then quickly added that he saw little difference between psychosis and dissociation as he hastily handed off the microphone to the next question-asker (preventing any argument with his controversial statement). And people wonder why I have given up on using the term “dissociation.”

Interestingly, the next couple of comments indirectly came back to my own, in swift passing, like: “I’d like to ask X, but also want to say that there is evidence that psychosis is related to trauma, and my question is X.” It was so strange, and the way people seemed to be afraid to really discuss this topic kind of blew my mind. To speak of trauma and schizophrenia in this environment felt like what probably happens when a man verbalizes that his wife has gained weight…it is something you just don’t do.

Now, I know that there are many financial interests that make the topic of trauma and psychosis a sure-fired way to drive a stake into the heart of one’s career (I wonder every day when that stake might find mine). But, this was something different. This was emotional, and coming from a group of professionals who have spent their careers fighting “the system” to get trauma-informed care more widely disseminated. These folks really are, for the most part, some pretty amazing people. There were so many stories of those who have spent their careers (with very little pay, I might add) helping refugees to get out of camps, foster children to gain a positive sense of self and attachment, and homeless individuals to get off the streets and find hope and purpose, all through healing trauma and recognizing the tragic consequences of cumulative stress. I do not believe for one moment that money is at the root of this clearly highly charged topic, at least not with this group of professionals. Yet, there definitely is something.

I can’t help but wonder how far we, as a human race, might come if we were to accept diversity in all of its forms, accept that suffering manifests differently for everyone, and stop attaching political weight to what is and is not acceptable ways of being human. One of the most famous trauma researchers in the world said to me several years ago, when I confronted him with this very topic: “Sometimes you have to choose between being honest and being effective.” The sad thing is, I think he was right. And, the experience at this conference seemed to prove that statement. I cannot be an effective clinician if I cannot graduate; I cannot be an effective researcher if I cannot get support or collaboration; I cannot be an effective advocate if people won’t listen; and yet, it is just in my nature to be honest. Even after all of this, and knowing the risks to myself, I still feel the right thing to do is to put the truth out there for others to read. Perhaps this is because I do not view this issue as a simple career-based, intellectual, theoretical issue; this is, fundamentally, a civil rights issue with far-reaching consequences. How am I supposed to be silent on that? And when people tell me I am exaggerating by comparing this subject with civil rights issues from the past, I need only to point to the interactions such as that described here. Talking about trauma, dissociation, and psychosis is akin to talking about race in the Deep South, the Israel-Palestinian conflict with vested parties on either side, or homosexuality with Catholic priests.

Why, though? Why in an environment with deeply compassionate, outside-of-the-box thinkers does a simple question provoke such an emotional and heated reaction? Why does a conference dedicated solely to trauma not have one panel or poster that even mentions psychosis? I am not saying that there isn’t a strong possibility that my theoretical assertions (the inter-relatedness of psychosis and dissociation) are completely false; but why are they so certain that they are right? Why are my questions and ideas consistently, systematically shut down? Why are yours also? Why is it that the words of those with lived-experience are so easily dismissed?**

It’s easy to just say that these people are evil, or they only care about money or their careers, or that they cannot deal with more complex or difficult things. This just isn’t true. “Trauma-related disorders” include extreme levels of hyperarousal, dismissiveness, violence, fear, rage, suicide, and bizarre presentations of trauma-related events that often result in vicarious traumatization of the therapist; the professionals who dedicate their lives to working with trauma victims are rarely in it for the money, fame, or ease of simple work. Certainly there is plenty of evidence to show that supporting the status quo, defending the dominant ideology, and endorsement of stereotypes is the norm for most people so as to maintain a sense of solidarity and belief in a just world (Jost, Banaji, & Nosek, 2004; Lerner, & Miller, 1977). Maybe these trauma researchers, like all of us, are just afraid of the unknown. Or maybe instead, they are afraid of being like all of us.

**Note: If anybody thinks that they might be able to contribute to first-person perspectives on dissociation, contact me ([email protected])! You might be able to participate in my dissertation research on the treatment of severe dissociation.

* * * * *

References:

Beck, C. T. (2009). Birth trauma and its sequelae. Journal of Trauma & Dissociation, 10, 189-203.

Beck, C. T., Gable, R. K., Sakala, C., & Declercq, E. R. (2011). Posttraumatic stress disorder in new mothers: Results from a two-stage U. S. National Survey. Birth: Issues in Perinatal Care, 38(3), 216-227.

Frewen P., & Lanius, R. (2014). Healing the traumatized self. W. W. Norton

Jost, J. T., Banaji, M. R., & Nosek, B. A. (2004). A decade of system justification theory: Accumulated evidence of conscious and unconscious bolstering of the status quo. Political Psychology, 25(6), 881-919.

Kudler, H., Lanius, R., D’Andrea, W., & Rasmusson, A. (2014, November). Towards an integrated theory of dissociation. Panel presented at the 30th Annual Meeting of the International Society for Traumatic Stress Studies , Miami, FL.

Lerner, M. J., & Miller, D. T. (1977). Just world research and the attribution process: Looking back and ahead. Psychological Bulletin, 85, 1030-1051.

McTeague, L. M., Lang, P. J., Laplante, M. C., Cuthbert, B. N., Shumen, J. R., & Bradley, M. M. (2010). Aversive imagery in posttraumatic stress disorder: Trauma recurrence, comorbidity, and physiological reactivity. Biological Psychiatry, 67(4), 346-356.

Morath, J., Moreno-Villanueva, M., Hamuni, G., Kolassa, S., Ruf-Leuschner, M., Schauer, M., …& Kolassa, I. T. (2014). Effects of psychotherapy on DNA strand break accumulation originating from traumatic stress. Psychotherapy and Psychosomatics, 83, 289-297.

Moskowitz, A. (2004). “Scared stiff”: Catatonia as an evolutionary-based fear response. Psychological Review, 111, 984-1002.

Rojas, E. E. (2014). Childbirth as a traumatic event: Understanding risk factors. Poster presented at the 30th Annual Meeting of the International Society for Traumatic Stress Studies , Miami, FL.

Schauer, M. (2014, November). This is my story, I am. Keynote Address presented at the 30th Annual Meeting of the International Society for Traumatic Stress Studies, Miami, FL.

Schauer, M., & Schauer, E. (2010). Trauma-focused public mental health interventions: A paradigm shift in humanitarian assistance and aid work. In E. Martz (ed.), Trauma rehabilitation after war and conflict. New York: Springer.

Thompson, E., & Zahavi, D. (2007). Philosophical issues: Continental phenomenology. In P. D. Zelazo, M. Moscovitch, & E. Thompson (Eds.), The Cambridge handbook of consciousness. Cambridge University Press.

Van der Kolk, B., Ford, J., Spinazzola, J. (2014, November). Developmental Trauma Disorder (DTD) Field Trail Outcomes: III. Differential comorbidity of DTD and PTSD. In J. Ford (Chair), The Developmental Trauma Disorder (DTD) Field Trial: Scientific integrity and clinical utility of a developmentally-informed complex traumatic stress disorder for children. Symposium conducted at the 30th Annual Meeting of the International Society for Traumatic Stress Studies , Miami, FL.

93 COMMENTS

  1. Noel, you always blow me away with your intelligent and honest critiques that get right to the heart of the matter. I’ve seen and experienced this exact same “let’s ignore the pink elephant in the living room” phenomenon. In the clearest example, I was at a committee meeting talking about setting some boundaries for the use of medication on foster youth statewide in Oregon. The topic was when we should trip a “red flag” mechanism for an outside review, based on age and type of prescription. Others were talking about whether the red flag age for kids on antidepressant should be any kid under 5 or under 6. I said, “There is no clinical indication for the use of antidepressants in kids under 6.” I was completely ignored, as if I had not spoken, though there was a brief pause that showed me they’d heard. I restated this louder, and was still ignored. When I later talked to the psychiatrist heading the effort (who really is a good guy and often advocates for less or no medication for kids in foster care), and he really had no justification or explanation for why that happened. It seems that there are “taboo” topics that you don’t find out about until you say something “wrong” and encounter the silence of denial.

    I don’t really know why it happens, but it is amazing that a conference on trauma would not be willing to even talk about this issue. It’s not rare in my experience that “PTSD” sufferers are diagnosed with schizophrenia or “bipolar” based on “hearing voices” that are directly related to their abuse (aka FLASHBACKS). If we broaden to other forms of dissociation, the boundary between trauma reaction and “schizophrenia” seems to become pretty porous.

    I wonder if they are worried about being attacked from the psychiatric profession is at the core of their unwillingness to talk about this connection? Perhaps they are dealing with their own professional traumas?

    Thanks for another great article!

    —- Steve

    Report comment

    • “It seems that there are “taboo” topics that you don’t find out about until you say something “wrong” and encounter the silence of denial.”

      Well, now, isn’t that the truth! It’s just a shame how often that seems to happen. I agree with you that there is a strong possibility that professionals are worried about being attacked themselves. It is a horrible feeling and not one that many are willing to tolerate.

      Report comment

  2. A caveat to my comments: I may be getting up on my own soapbox a little bit and going beyond the scope of the article. I’ll leave that to others to judge.

    My personal opinion is that attitudes toward psychosis and its corresponding biomedical labels (Schizophrenia, Schizoaffective, etc.) are especially bigoted and prejudicial. And we are in a pre-awareness stage when almost no one believes this is true and look at me like I am from Mars when I suggest this. (At least within the system.)

    I feel like people given these labels are frequently written off. I believe that the mental health system treats folks who have been given such labels as “less than” and “other.” It’s a “those people” attitude often full of deeply patronizing or condescending assumptions. “Those people are sick. Those people cannot make good decisions for themselves. Those people will never experiencing meaningful healing.”

    These attitudes lead to “services” that are focused on “managing” people with such labels, so that they are not inconvenient to the rest of us. Symptom suppression through drugging, restrictive “residential” programs, and treating people like they are 5-year olds.

    I believe this is also why people don’t talk about trauma and psychosis. It’s just a “population” that has been written off. I believe that most people in mental health (from psychiatrists to social workers) don’t believe people who have experiences we label as “psychotic” can heal or live rich full lives. Instead they take the “feed and water” attitude that is so dehumanizing.

    Attitudes in psychiatry and the mental health system more broadly may be pervasively problematic – but they are the worst of the worst when it comes to so-called “SPMI”

    Report comment

  3. Noel:

    My daughter has been labeled with schizophrenia, bi polar, and schizoaffective and she is locked up in a hospital that feels more like a county jail. I believe she will get better but it will be a long hard journey home.

    I believe that her main problem is disassociation. My daughter and I are starting to talk about the various traumas in her life, but the most obvious trauma she is dealing with today, is being a prisoner in a jail that sells itself as a place of healing. With so few comforts from home, very little in the way of challenging and appealing activities to pass the time (My daughter studied art in France and she is coerced into engaging in daily ‘art therapy’ which consists of little more than being given crayons and coloring books). In this environment where upside down is right side up, she is forced to be a prisoner in her mind.

    Make no mistake, the place where my daughter is forced to reside is safe only by the meanest definition of safe. It is not a place of healing. It is a cold, institution with no pillows, tapestries, artwork, plants, etc. The residents do not help make their own meals or do chores. Their loved ones cannot bring in home cooked meals, not even out of respect for their cultural differences or on days of religious significance.

    At a state hospital a year ago, wept along with a fellow mother, an Ethiopian woman in a burka, as the security guard threw out the precious bottle of olive oil, the flatbread, the lentils etc. that she had lovingly prepared for her beloved son who was involuntarily committed on the same ward as my daughter. Pizza Hut and McDonald’s are favored in ‘secure’ psychiatric facilities while home cooked food and food with micronutrients are considered at risk because of the possibility that we parents are lacing our children’s food. And they talk of ‘culturally informed care’ Hah! Clearly, these hospitals were not designed with the input of people with lived experiences.

    At the latest place, the acoustics are horrible and the locks, clanking doors, and buzzers that one encounters along each locked wending hallway to the next locked door until one comes to the pexiglass nurses station, including the occasional scream, the sound of soft crying, and the intercom telling patients what to do, echo throughout the sterile cement walls and floorways as if one is in a nightmarish underwater echo chamber.

    This kind of environment perpetuates disassociation. If I were in prison or a psychiatric facility that parades itself as a safe place of healing where people experiencing a horrific range of traumas are warehoused, I would be disassociated too. And this is supposedly a state of the art facility that bills our insurance at the rate of about $1,000/day

    Involuntary commitment is very traumatic. No paid worker at this hellish place, to my knowledge has ever acknowledged to my daughter the traumatic nature of her ‘treatment’ and how to deal with it.

    The only way for her to earn her freedom is to admit that everything in her medical records is accurate and accept her diagnosis and treatment model which is medication for life. This is the essence of medical coercion. Replace ‘Gain insight into your illness’ with ‘recanting the Devil” and it is not a stretch of the imagination to regard some modern psychiatrists who decide who gets discharged and who stays for more forced treatment as an updated version of the Inquisition.

    This environment reinforces all of the unhealthy coping mechanisms that some individuals acquired during their childhood when they first experienced abuse, loss, or grief, bullying, or disassociation. Some of the hospital workers are smart enough to admit this privately, but rarely will one put his/her job on the line to do right by a patient to protect his/her rights. Just one worker can do so much good for a patient by showing through words or actions just a tiny bit of empathy or solidarity, let alone openly to an authority figure in the medical hierarchy, but such words and actions are far and few between.

    Anyway, thanks for letting me vent and thank you most of all for being so brave by attending these conferences that can be very hostile and speaking your truth. I believe that your truth is very relevant to our family’s situation.

    Report comment

      • People talk a lot about recovery in this community but some of us just hope for survival from day to day. The irony is that some parents act as if the children who receive lots and lots of psychiatric care have just won the lottery. The parents who get the most air time in the media are those parents who can’t get their kids admitted to these places of horror! I think the parents whose children are institutionalized who really know the full extent of the horrors that go on in the name of ‘treatment’ need to organize. First, how many of us are out there?

        Report comment

        • Madmom,

          You (and Noel) have got me wondering – how many of us ARE out there ?

          By ‘us’ I mean parents (of adolescents or young adults troubled by known or unknown trauma), who through well-intentioned ignorance allowed or even encouraged (god forgive us) our offspring to become embroiled in a mental health system that we now consider to be responsible for their current (much) worsened mental state. Where the initial trauma, whatever that may be, has become overshadowed by the trauma of the subsequent ‘treatment’. Where the current symptoms of our ‘patient’ bear no relation to their original symptoms. Where the system that welcomed us with open arms now attempts to brush us aside. Where the people who listened intently and knowingly to everything we had to say, scribbling comprehensive notes as we spoke, treat what we now have to say with ridicule and contempt. And where, when we admit it’s all been a terrible mistake and try to retrieve our loved one to a place of safety, all of hell breaks loose.

          Anyone ?

          Report comment

    • Dear Madmom,

      I’m so sorry to hear about your struggles with your daughter. You say that: “Just one worker can do so much good for a patient by showing through words or actions just a tiny bit of empathy or solidarity” and I would agree that this is extremely powerful. I would also suggest that just one mother can do the same. Your caring and support and willingness to discuss her traumatic experiences and validate the difficulties she is experiencing now should not be considered small. I’m sure that you are making a huge difference in her overall ability to possibly heal, even if you never know it directly.

      All the best…

      Report comment

  4. Noel,

    From the perspective of my experience, observation, and current situation, this is one of the most interesting pieces I have read on MIA and possibly the most personally relevant.

    Please do not stop using the term dissociation, and please, please, keep on with your trauma-psychosis research despite the stake you mention. I am aware of it – a UK psychiatrist I have met several times who believes, as I do, and as you appear to, that the roots of psychosis lie in trauma, tells me of the appalling reception his views receive from mainstream psychiatry.

    Tellingly though, whereas my son’s NHS consultant could only hold his attention for maybe 2 minutes before he either clammed up and looked at the floor, or dissociated to another place, on each of the three occasions Dr Crazy-Trauma-Ideas has met my son, he has had an hour-long conversation with him.

    On ‘diagnosis’, my son has been labelled psychotic, then schizophrenic, then schizo-affective, then schizophrenic again. Whereas his ‘symptoms’ are clearly those of dissociative PTSD – to the letter. And no, the irony and contradiction of dismissing one bullshit DSM 5 diagnosis but accepting another is not lost on me.

    Report comment

  5. Thanks Noel, for the interesting piece. I think there are problems with the use of the terms dissociation, psychosis and schizophrenia. Dissociation from one’s surroundings is common when the surroundings are boring or unpleasant, and one can likewise dissociate from traumatic memories. Periods of dissociation are common and ‘normal’ – daydreaming, for example.

    The term ‘psychosis’, often defined as being ‘out of touch with reality’ blurs into dissociation, though the medical profession pretends there is a clear-cut distinction between them. I believe that trauma can cause psychosis, and people labelled with ‘schizophrenia’ experience severe trauma just from the label and the accepted treatment for it. It is very traumatic to be convinced that you have an incurable, progressive brain disease that makes your mind ‘sick’. Refusal to accept this grim judgement of your thinking and behaviour is routinely called ‘lack of insight’ and a justification for forced drugging with chemicals that are known to cause dulling of emotional reactions and ‘flattening of affect’ as well as feelings of dissociation and disconnection from ones surroundings.

    I think the cruel system of hospital-based treatment increases the distress of those who are forced to be in what are essentially prisons where you are routinely drugged with toxic and often addictive chemicals. This, combined with the loss of self-esteem and motivation that comes from believing you are incurably mentally defective, explains much of the phenomenology of ‘chronic schizophrenia’.

    Report comment

  6. Dear Noel, I have an interesting case (Complex Regional Pain Syndrome) and believe that I have also been erroneously diagnosed with conversion disorder. Is it possible to have a mental disorder while exhibiting physiological signs . Please help me to understand.

    Report comment

    • I don’t wish to comment specifically to your situation, as I am not able to work in depth with you one-on-one to understand the complexity of your particular dilemma. Having said that, “conversion disorder” refers to experiences where individuals suffer very real, very frightening, and often very disabling physical problems that are entirely psychologically based. The most common of these might be when when someone experiences a seizure that is not due to an actual neurological problem, but rather is a result of psychological conflict. It doesn’t make it any less real, it’s just that the basis of it is different. Similarly, one may experience chronic, excruciating pain that is very debilitating yet nonetheless has a psychological basis to it. Many “real” physical problems, like heart disease, chronic pain, and digestive issues have a very large psychological component that interacts with the physiological. It’s one reason that mediation and yoga are so effective with these problems….

      Report comment

  7. One way of trying to protect people from oppression is to say that they don’t really belong in the category of those being oppressed “Why this person is not a witch, the real witches are over there!”

    For a long while, many of the trauma and dissociation professionals have been protecting their clients diagnosed with dissociative disorders in this way, “they aren’t insane or psychotic, they are having understandable reactions to what happened to them, the real insane people are over there – those with schizophrenia!” They have used this same defense to protect their line of work, which is offering psychological help to people with dissociative disorders.

    To then say that there often is little difference in what happened and what is happening between those diagnosed with dissociative disorders and those diagnosed with schizophrenia seems to undermine this whole line of defense and justification. So confusion about how to handle all this may account for some of the strange silences…..

    I think it’s also worth pointing out that many important people in the trauma and dissociation field are becoming very willing to talk about dissociation within the experiences of those diagnosed with “schizophrenia.” I think it’s a field in some flux, where getting discussions going is quite important…….

    Report comment

    • Ron, as usual I agree….mostly. The only part I might digress is where you say “many” people in the trauma field are “very” willing to discuss this. I would definitely say “some”, and you and I are very familiar with at least “one” (who is also on my dissertation committee), but I think “many” is a stretch. Getting discussions going is EXTREMELY important. I guess that’s why I want to come up with as many reasons as possible for why I see reactions like what I describe here. The more understanding we have, the more we can figure out how to create a more open dialogue without this fear.

      Report comment

      • Hi Noel, I guess I should have said where my sense of “many” was coming from – thing’s like a number of people on the Dissociative Disorders Listserv who have expressed a lot of interest in the Hearing Voices Network and its approach, and the interest I’m getting here in Eugene OR among trauma therapists who have signed up to attend a seminar I’m doing on “Trauma, Dissociation and Psychosis” this Friday. And Jennifer Freyd at the UO (also editor of the Journal of Trauma & Dissociation) has been inviting me in to speak in her classes every year for a long time on that topic and she has been very supportive.

        I’m not saying I don’t also run into the other kind of trauma professional, those who are adamant that the emperor of schizophrenia is fully clothed and any competent professional can see the clothing, and on such a basis distinguish it from dissociative disorders……

        Report comment

        • Jennifer Freyd is one of the most amazing women I have come across! I’m so happy to hear that she has been supportive. Yes, many, in fact most, dissociative disorder specialists are interested in HVN and accept that hearing voices are dissociative. This can be credited to the brave and pioneering work of Andrew Moskowitz. But, nonetheless, voices are considered “pseudo-hallucinations” and still completely unrelated to “schizophrenia”.

          I would really love to hear about how your seminar goes this Friday….

          Report comment

    • This is a very good point and I don’t think it’s just limited to those who treat dissociative disorders…for whatever reason schizophrenia is the bogeyman of the whole DSM sometimes it seems (along with BPD maybe)…it’s also the diagnosis which people always seem to bring up in the context of a psychiatric disorder which is “clearly” biological in nature (as if)…

      Report comment

      • I would agree with you, Truth, except that those who treat so-called dissociative disorders are working with individuals known to enter into altered states deemed “psychotic”, have anomalous experiences deemed “psychotic”, and who accrue numerous psychotic diagnoses. Yet, these particular researchers/clinicians spend a great deal of effort saying well, these folks are just “psychotic-like” (a whole section in the DSM-5 is dedicated to this logic) without anything beyond ideology to back up such claims. And, they also fight for folks with that epithet of a label BPD to be included (a noble effort few other professionals are willing to engage in), while specifically excluding the “real psychotics” of “schizophrenia”…

        Report comment

        • Noel,

          Wiki states, “The major characteristic of all dissociative phenomena involves a detachment from reality, rather than a loss of reality as in psychosis.” Given this definition, I guess what I experienced was more like dissociative phenomena rather than psychosis.

          I was dealing with a cover up of a “bad fix” on a broken bone, at which my PCP’s husband had been the “attending physician” (although this was unbeknownst to me at the time). The cover up took the form of putting me on a “safe smoking cessation med,” Wellbutrin, then being abruptly taken off it, resulting in the common symptoms of anti depression withdrawal syndrome. Worsened by the common ADRs of a NSAI, and major drug interaction warnings with an occasional “pain pill,” a synthetic opioid. I was then subsequently bullied, to a cover up of the sexual abuse of my small child, but I was still in denial of the abuse at the time, so didn’t understand why I was being bullied.

          I ended up going outside my insurance for a second opinion, since my PCP was claiming her drugs had not caused the flu-like symptoms (which she further drugged), brain zaps, odd dreams, increased libido (Wellbutrin was marketed as the “happy, horny, skinny drug) and unusual thoughts I’d developed. This occurred right around 9.11.2001, so that added societal trauma, didn’t likely help matters.

          Unfortunately, the psychologist I went to, unbeknownst to me at the time, was friends with the child molesters. I ended up having the above mentioned withdrawal and ADR symptoms claimed to be “depression caused by self,” “paranoid schizophrenia,” and “bipolar” within two weeks by three different doctors. And I was immediately put on .5 mg of Risperdal.

          This child’s dose of Risperdal caused me to suffer from a terrifying psychosis within two weeks. My theory, based upon many years of research, as to why this happened is because the antipsychotics can indeed cause psychosis. From drugs.com, “neuroleptics … may result in … anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

          It strikes me, that since the antipsychotics do cause psychosis, it’s possible most schizophrenia, bipolar, and / or dissociative phenomena could actually be a result of doctors misdiagnosing the central symptoms of neuroleptic induced anticholinergic intoxication syndrome as these other illnesses. The only difference between the symptoms of schizophrenia and the central symptoms of neuroleptic induced anticholinergic intoxication syndrome are “inactivity” vs “hyperactivity.” I, of course, was claimed to be “hyper” about finding the etiology of my illness, since I had no personal or family history of mental illnesses.

          Are you familiar with any discussions on this topic within the mainstream medical community? I will say the psychosis caused by this neuroleptic induced syndrome does result in one being distracted, since having voices pumped into one’s head is distracting, but it does not result in a loss of reality.

          To the contrary, the voices (inadvertently) actually helped me to mentally come to grips with the fact my child had indeed been abused, and that my doctor was an unethical doctor. And once some decent nurses handed over, and I picked up the rest of, my family’s medical records I did find the medical evidence of the abuse of my child, and eventually found the medical evidence of how doctors create psychosis to cover up their easily recognized medical mistakes.

          I know all my prior doctors (except an oral surgeon) were completely unaware of the fact that “antipsychotics don’t cure concerns of child abuse,” and they all acted like they’d never in their life heard of a person who was allergic to the neuroleptics (my grandmother was too).

          Is the psychiatric industry actually unaware of the fact that the central symptoms of neuroleptic induced anticholinergic intoxication syndrome are basically the same as the symptoms of schizophrenia? My subsequent pastor confessed that the “dirty little secret of the two original educated professions” is that the psychiatrists and mainstream doctors have been covering up child abuse for the religions and easily recognized iatrogenesis in this manner for decades.

          Report comment

  8. Thank you Noel for making this experience of yours public in this way. You ask why bringing up the possible link between trauma and psychosis should cause such panic, but isn’t that the standard reaction to uncomfortable truths? The question is, why is it so uncomfortable? What is so threatening about the idea that psychosis might be caused by trauma?
    In part it is indeed possible that it is a question of “dissociation experts” not wanting to tread on the tail of the dragon of mainstream psychiatry. “Schizophrenia” is psychiatry’s turf and nobody wants to start a turf war with the meanest, baddest gang around. Not a lot of people are willing to put their careers, however humble they might be, on the line for the sake of defending a hypothesis – the fact that you seem to be one of them says great things about you.

    But I think there is something more to it, because where there’s a trauma there must be an agent of trauma, mustn’t there? The link between trauma and psychosis is an accusatory finger that could potentially point to a lot of nice, normal, loving and well-respected families and, in a wider sense, to society as a whole. This might be particularly true if you refine the trauma-psychosis hypothesis a bit: could it possibly be that psychosis is particularly likely to develop when in addition to trauma the victim must keep the trauma secret, must deny the trauma, because the revelation would implicate those on whom the victim is emotionally dependent? (i.e. close family members) It is Bateson’s “double bind”, which I think should be revisited, adding “trauma” to “double bind”. This is of course a gross oversimplification but still, food for thought.

    And of course it isn’t just schizophrenia, is it? Bipolar, Depression, Eating Disorders, Substance Abuse, perhaps even, dare I say it, Homosexuality? (go and actually ask a Catholic priest, you might learn something).

    So maybe it’s all about secrets, Noel; and bringing dark secrets out into the open will always make people uncomfortable and look the other way. You might be rocking a bigger boat than you realize.

    Report comment

  9. Noel and madmom. Thank you for both of your writing and commentary. Madmom your daughter is so very very lucky to have you. And kudos to Angry dad as well. It helps so much to have a family member not only empathsize but understand the awful experience and trauma that inpatient life is.
    I never had a family member who was able to see the truth and allow themselves to be outraged and not live in denial and minimization.
    Noel, I think you are right on target. I think you are dealing with the fear that the psychatiric professioanl world would crumble if folks really acknowledge the extant of trauama to all.
    I had a relative who actively disociated in front of my eyes while we were in an ER waiting room while another relative was being seen by the medical team. She saw blood on her hands and there was none. If I knew what I know now that would have been a red flag for me to know that a close family relative dissociated during a time of trauma and it was yucky. I would have planned my life differently and not be so sure I could withstand any stress. Not!!!!!!!!!!! Decades later it happened to me though in a different context and expression.

    Report comment

  10. Hi, Noel. Thoughtful and provocative article. Appreciated your locating this issue in its political context. rarely done by folks involved in “mental health”. After all, power is the crux of what you’re addressing — who has the power to affix a usually pejorative label to individuals regarded as damaged and inferior? The phenomenon you described — professionals dissociating themselves from a label that might taint them and their work — is certainly not a new one. Those of us who have spent our professional lives working with poor, beaten up folks slapped with pejorative mental illness diagnoses, know that we and our work have been demeaned and ignored. In line with those we’re seeking to help. Simply, one’s professional status is determined by those whom you help … which is why the public mental health system is corrupt, overseen by leaders who have adopted a corporatist model that posits the objectives of its funders as paramount and to hell with the workers and their clients.

    I was surprised — and disappointed – to learn that renowned trauma clinicians and researchers were so leary of making a connection that’s self apparent to those of us who’ve worked with individuals labelled schizophrenic. Virtually every one of the thousands of case management clients we worked with over the years had lived lives of horror — just imagine any form of abuse and they had experienced it; and it became a sad, running joke that any black man who had admitted to any “psychotic” experience — usually “hearing voices” — invariably came to us with a label of schizophrenia, while any woman of color with a similar history was labelled “schizoaffective.” And here, the obverse of your article, no mention of trauma/abuse ever appeared in their referral packets.

    And so we’re back to square one — who does the labeling and who gets labeled? Equally important, what role do professionals play in this ugly game … aid and abet it with silence, by not speaking the truth we know, or opposing it and, as Hamlet would have it, end it? The risks are great, as your trauma professionals appear to know — Hamlet’s end was rather dire. But it begs the political question — to label or not to label: who gets to decide?

    Report comment

  11. Thanks Noel for this post – it raises a confusing range of questions.
    On the science of it, I look no further than the Related Post link – “Questions about Childhood Trauma & Schizophrenia Settled”. I also offer this link – https://childtrauma.org/wp-content/uploads/2014/04/Read_Fosse_-Moskowitz_-Perry_2014.pdf The evidence is compelling that a clear link is present.
    But you aptly point to a Political Battle – I assume that BioPsychiatrists see this research as encroaching on their turf and undermining the dominant chemcial imbalance narrative. And I agree w/ Ron, that Trauma providers and survivors don’t wan’t to be associated w/ this intensely stigmatized group of people .
    For me, a great deal of this battle is about definitons and labels. The label of psychosis is worse than meaningless – it is not descriptive, prescriptive or predictive. It only manages to stigmatize and make people feel hopeless/helpless. A “symptom-based” approach offers some clarity where we seek only to address what barriers, distress, concerns a person presents – i.e. I feel scared that people are trying to hurt me, I’m confused about who I am” seems a much more straightforward, collaborative starting point. Our insistence on diagnoses and defining dissociative can obscure this. Lucy Johnstone & others recommend “psychological formulations” – simple problems-in- living statements in help-seekers own words without the need for the psychojargon.
    Will get to hear from John Read, a leading reseracher on this topic, tomorrow at ISEPP conference in CA. Keep the dialogue going.

    Report comment

    • Thanks Wayne, I agree with everything you say here. If you see my previous posts you will see I’ve argued these very same points using the very same resources. Clearly we are on the same wavelength….
      How I wish I could be at ISEPP tomorrow! I look forward to hearing how it goes!

      Report comment

  12. “The necessity of “human/child/woman’s rights [to be] at the core of counseling and therapy”

    Marvellous – it’s the abuse of power that drives some of us mad and it’s being treated with dignity and kindness that is the prerequisite for healing.

    I helped someone who had a diagnosis of schizophrenia, and about 8 other things, who was extremely dissociated. He used to go for long walks and not remember how he got to his destination. Now he remembers most of how to gets to places and does not have that perticular problem. Other’s yes, such as hearing voices, though not nearly as nasty as they used to be, but that one, no longer.

    Report comment

  13. Noel,

    Thank you for sharing this confusing experience with us. It has been clear to me that most if not all extreme experiences (‘psychiatric symptoms’) are related to one’s life. For some reason psychosis is left out of the conversation when it comes to environmental stress, especially severe stress and trauma. I wonder if the extreme nature of some of these ‘symptoms’ are hard for people to understand and are held out by psychiatry as examples of ‘real’ ‘illness’ and thus a justification for the field and all of its biological treatments. Your work and voice are helping to break this silence…glad you shared with them…and with us.

    Maybe we could plan a conference on this topic…trauma as a cause for psychosis…

    Report comment

    • A conference dedicated to trauma and psychosis sounds awesome! Until that happens, however, ISPS in New York (March 2015) will have a good amount of focus on the subject. I know that there is upset regarding some of the speakers, but I think overall it will be a good balance. And, it is the only organization that I know of that really does justice to the subject, even if it is not always a central focus….

      Report comment

  14. Noel, I noticed Ron Unger suggested that the 1,200 member Dissociative-disorders listserv might perhaps be a community worthwhile for you to join. If interested, see their registration page:
    http://www.lsoft.com/scripts/wl.exe?SL1=DISSOCIATIVE-DISORDERS&H=LISTSERV.ICORS.ORG

    ISTSS, which if I am not mistaken is the conference you attended in Miami is, organizationally, very slow on the dissociation uptake, and many of its members do tend to regard a dissociation-based diagnosis as a political football. The DSM5 changes to explicitly add a dissociative subtype to PTSD was an effort to move the trauma field forward in considering the impact of dissociative experiences in trauma sufferers, and to perhaps lead to more effective treatments.

    Regarding a definition of dysfunctional or distressing dissociation, how about the diagnostic definition: “a disruption of and/or discontinuity in the normal integration of consciousness, memory, identity, emotion, perception, body representation, motor control, and behavior”. If it strikes you that many with a “psychosis” diagnosis would fall under this definition, your thinking would be in accord with even the earliest studies of dissociation within the putatively psychotic population: http://ge.tt/5iG7Z0s1/v/0?c

    Moreover, those within the putatively psychotic population whose subjective experiences, as related by them, deemed to be dissociative in quality are very likely those who can benefit from dissociation-treatment principles, including those like Hearing Voices, plus those additional dissociation-treatment principles not addressed by Hearing Voices, but which are used successfully by those treating suffers diagnosed as having a dissociative disorder.

    Report comment

  15. Another way to research trauma and psychosis that hasn’t been done in awhile.

    Zinn Education Project with Bríonain Ní Bheacháin
    2 hrs · Edited ·

    ‪#‎tdih‬ On November 14, 1889, pioneering journalist Nellie Bly (aka Elizabeth Cochrane) began a successful attempt to travel around the world in less than 80 days. As a reporter, Bly sided with the poor and the disenfranchised, as when she went to Chicago in 1894 to cover the Pullman Strike from the perspective of the strikers. She also had herself committed to a mental institution so that she could do undercover reporting and expose the cruel conditions. Here are resources for teaching outside the textbook about the media: http://bit.ly/1xyN5oO Photo: The Library of Congress, c1890.
    #tdih On November 14, 1889, pioneering journalist Nellie Bly (aka Elizabeth Cochrane) began a successful attempt to travel around the world in less than 80 days. As a reporter, Bly sided with the poor and the disenfranchised, as when she went to Chicago in 1894 to cover the Pullman Strike from the perspective of the strikers. She also had herself committed to a mental institution so that she could do undercover reporting and expose the cruel conditions. Here are resources for teaching outside the textbook about the media: http://bit.ly/1xyN5oO Photo: The Library of Congress, c18

    Report comment

  16. Hi Noel,

    Very thoughtful and detailed post. The anecdote about the dissociation panel struggling to define it’s topic alone is quite interesting, if not surprising. There’s a lot else here that’s thought provoking. I appreciated the engagement with psychosocial as well as genetic and neurobiological research.

    Thanks for writing.

    I certainly agree trauma-individual, interpersonal and cultural- plays a role in a wicked lot of distress.
    There’s quite a lot of research on this even when focusing only on psychosis.

    On the other hand, if your claim is psychosis is always a result of trauma, that it’s best reframed as dissociation, I don’t agree. I do think this is one crucial avenue and I’m glad you are exploring it. But I think we need to attend to the many ways in which these states arise, are experienced, addressed and in many cases resolved: The heterogeneity of etiology, phenomenology, effective care and course.

    Report comment

    • Hi Timothy,

      Thanks for your comment. I would agree that it is important to attend to the numerous ways in which one might become overwhelmed and distressed. My problem with the term “dissociation” is precisely because it leads to the sort of assumptions as you appear to make here. Dissociation is a term that is used in every field of study to mean, quite simply, a sort of disintegration or separation. Mental health professionals use this term politically to mean “trauma”. The problem with this is that the term “trauma” is an entirely subjective, human term that has no objective reality to it. What is traumatic to one person is not the same as it is to another, and what is traumatic to a baby is not what is traumatic to an adult. For instance, I sited above research showing that attachment disruption (which may not have any relation to “trauma” as we define it) is far more “traumatic” than is physical or sexual abuse by a non-caregiver. To define what is and is not traumatic, and what is and is not “bad enough” to have an extreme reaction to is where the civil rights issue comes in to play.

      Having said all of that, I do not believe there is any one “cause” for the distress that humans experience. But, I do believe that all forms of extreme distress, including, and probably most especially, that which we call “psychosis” is always a meaningful response to overwhelming circumstances in life and is a natural human attempt to adapt and grow. Whether or not an outsider considers these overwhelming adverse life experiences to be legitimately traumatic or not is not really the point. How the person who is experiencing the distress frames his or her experience and makes meaning out of it is the point. Most often, the meaning is couched in experiences of trauma.

      Report comment

      • I actually wanted to add something because I realize that my response might give the impression that I disagree with you, and I do not. Sorry for the long comment, in advance.

        You state: “But I think we need to attend to the many ways in which these states arise, are experienced, addressed and in many cases resolved: The heterogeneity of etiology, phenomenology, effective care and course.”

        I agree completely. My problem with all of these terms (which I ranted on a bit in a previous blog) is precisely because these experiences are so unique to each individual. I wish that we would just talk about specific experiences and not syndromes or medically-sounding processes that we have no actual proof exist or even any agreement on what they mean. We need to accept humanity for its uniqueness, and treat every individual as an individual (and I mean this regarding everyday life as well as in professional work). It is human nature to try and group people together and categorize them based on some superficial similarity. This same argument can be made (and has been) about race; one similarity does not make anything else similar, necessarily, beyond that one similarity. Because you hear voices and I hear voices does not mean that our experiences are the same, came from the same place, or will be worked through in the same way. It takes effort to move beyond boxes and treat people as individuals.

        My point is that, with all of this in mind, I also think it is imperative that we assume first that there is meaning in said experiences. The meaning is individual, and is usually associated with trauma, but healing can be found through so many different ways. Even if we couch it in trauma, this is still true. It’s about going on a journey together.

        Report comment

    • Hi Timothy, Probably it would be nice if academics and clinicians would get honest with themselves and join in admitting that affected people themselves have first crack at noticing or suspecting that they’re faced with problems in living. About the 99% of the time the very first concern added is for what a screwed up time it could be to have to start relying on the going programs for help or information. So, what Noel is obviously most clear about is that people who perceive their need for some attention to a problem basic to their experiencing will soon try obtaining attention that serves as feedback to help themselves figure out where they stand with their impairment or all the clinical guesswork that caregivers demand them to accept as objective fact or near enough not to doubt it’s out of the subject in question’s own hands. Next, this step of taking on varying roles and mimicing less natural attitudes in order to present something needed, ackowledged, or believed possibly helpful for eventually getting some real help for themselves, all gets called shady names. Those names ramify the diagnostic logic, and the disease appears irrevocably as the patient’s last mission in life. Learn all about it for good. Always think and say what it’s like. Subscribe to MIA and we’ll see your posts there. Be understandable and see how much people like you letting us help you. Stay near some tests.

      Report comment

  17. I have a rather lengthy experience with dissasociation both first hand, and I watched as my mother was hospitalized for months with disassociative seizures. I will say that dissassociation is a pretty broad diagnosis because it is so closely related to trauma, and being that trauma is purely individual I assume it must be completely unique to each person who experiences it, and it’s sneaky the way the brain attempts to save you when you can’t save yourself. “We fool ourselves so much we could do it for a living.”

    Report comment

    • Acidpop- You suggest a very cool way in to thinking this idea over of reactions to and reactions from, that makes for trauma research. In a similar vein, I see the omission of a discussion of actual reaction times themselves to reflect the most obvious of insufficiencies of the current working theories for PTSD. If you are waiting to get killed behind the wheel unless you think fast, or made an object of revenge or further hatred by an abuser, not just any old lazy decision made as if routine fits the bill. Why will neuro-research not aim at this phenomena for psychosocial interests? If trauma victims aren’t particularly concerned with saving themselves or others in dangerous emergencies before getting impaired from some recognizable event, they definitely are later. They should be rewarded for their wise vigilance and not diagnosed for it, too, the. And how could you deny not getting concerned about how decisive and willing you must have to stay for instant reactions? The statements of theory I’ve seen come up short in revealing the certain recognition by researchers generally of patients as responsible actors in their own lives who are fully coscious of the fact. Elitism is another diagnosis aimed by behavioral science only away from itself and its coveted allies.

      Report comment

  18. I have been diagnosed as schizophrenic. I have suffered childhood trauma. I try to suggest that perhaps I am suffering ptsd. It is dismissed immediately. The circumstances surrounding my trauma are complicated.

    While riding our bikes one day in 1980, when I was 11 and my cousin was 12, my cousin asked me to push him. I did and he was hit by a car as soon as he got onto the bitumen. It wasn’t long before all memory of that accident was lost and if people asked what happened I shrugged and either said nothing or that he was hit by a car. I grew up mostly normal, I guess. Took a long time to get the hang of girls, if I ever did. Alcohol was latched onto. I think I might have remained 11 in a growing man’s body. Made a fool of myself habitually. Naturally I took to drugs and alcohol, prostitutes and masturbation a little more than most people.

    So I was already an outsider by the time I had the abrupt experience of recall of the trauma from my childhood about 20 years later which was like the second wham of a double whammy. In an instant I relived the moment that brought everything back to me. At first I felt elated that I had been able to remember and therefore give my uncle some description of what I had just remembered (he wasn’t so thrilled) but as time went on it dawned on me how possible it was that people could think that I had deliberately tried to kill my cousin. Two Traumas in one. The experience as an 11 year old and the realizing of the validity of being accused as a killer or even someone who would attempt such a thing. So stress and post traumatism both.

    Take into account that at about age 22 I took up a New Age practice of tuning in to my *guides and both hearing and seeing (out of body experiences) and you might be able to see how when affected by that kind of stress I began to have unpleasant voices in my head. I also perceived a lot of anger around me, tacit anger. I began to realize how unwelcome my presence was. Still unable to articulate this unease I went to the emergency dept. to seek help, I was referred to CAT team and was put in care. That was about 2004. It has taken a good 10 years to come around to the conclusion, at least for myself, that my disorder is a result of the childhood trauma. But when I mention that I might have ptsd they say “No.”

    Report comment

  19. As a sufferer myself, I can assure you that negative symptoms of schizophrenia are not acquired through (over)use of neuroleptics. Instead, they are an intrinsic feature of the disease itself. I had my first and only psychotic break last summer; and negative, as well as cognitive impairment ensued, those symptoms were already there when they put me on medication and they’ve gotten somewhat worse over the course of a couple months, after which they remained at a constant level (which, I might add, is a high enough level to prevent me from living a normal active life. I feel like a vegetable these days … )

    Report comment

    • Hi Audrey,

      I think the bigger picture is that for some people like you the drugs don’t seem related to the “negative symptoms” which for others the drugs definitely cause them to get worse, while for others they may even get better on the drugs – with an “average” effect that the drugs don’t seem to make “negative symptoms” worse or better. I think it does make sense for everyone to pay attention to the actual effect of the drugs for themselves.

      One thing I suggest people experiment with is instead of thinking of the “negative symptoms” as being part of an illness, is to think about them as possibly related to things like confusion and demoralization. If people start noticing when things seem just a bit more clear, when some inspiration, hope and other affect emerge even a bit, and support that in a good way, then the “symptoms” can fade.

      By the way, if “one thinks of negative symptoms” as related to confusion and demoralization, it becomes easier to explain why the drug effects on them could be so variable. For some, the drugs will suppress the things that have been confusing and demoralizing them, and the “negative symptoms” will decrease. Others will find the drug effects themselves to be confusing and demoralizing, and will have “negative symptoms” increase. For others, the two effects will cancel each other out, there won’t be any noticeable change one way or the other.

      For more on a psychological approach to these problems, you might start with https://bbrfoundation.org/discoveries/aaron-beck-reducing-schizophrenia%E2%80%99s-negative-symptoms

      Report comment

      • Ron – Really excellent comment to interject…re: “possibly related to things like confusion and demoralization. If people start noticing when things seem just a bit more clear…” And for sure if therapists start telling people what you’re telling Audrey it will help.

        I see the reference in your statement to include the essence of my own process of adjustment over time to something a little better. And, of course, with a label for the bad, dangerous bipolar, and symptoms and history for DPAFU and PTSD, I met with nothing but catastrophizing, overgeneralization, and black and white thinking when I tried to bring up how exactly I felt versus the label identification of me. In fact, I could take the moments of clarity had during the use of medication (like for short-term or even PRNs) and apply the confidence it gave me when I took vacation from drugs. You need to connect with your deepest feelings to get the handle on how you are there at that level and it means you and your body are one.

        The further point that intersects with Noel’s intentions is the relatedness of all disorders, in that none of them are just sitting inside you in some knowable form and causing you to be unable to change–in the final analysis. If they were you’d be able to seek help from the neurologist. So if you tackle emotional pain, it isn’t that some similarity between disorders is what can let that work happen for everything from dissociation to panic to psychosis, it’s in the nature of the difficulty of how the whole person is involved in the production of symptoms, in managing them, and in learning who to secure relief from what they make you believe about yourself and how they impair you. No matter the psychiatric category or label.

        Report comment

    • Hi Andrey,
      Thank you for your thoughts. I agree with much of what Ron has said. Though it may not be clear from my article, when I claim that much (not all) of what we consider to be “negative symptoms” are iatrogenic, I’m not necessarily referring to neuroleptics. I’m referring to the profound hopelessness, helplessness, and confusion that gets instilled the second one enters “treatment”. Having said that, I also tried to explain how apathy, lack of motivation, confusion, the mental fog, feeling like a “vegetable”, etc., can be explained through depressive and dissociative processes…thereby giving support for my assertion that perhaps psychosis can be understood through a trauma framework rather than a medical illness.

      However, I also understand that many do view their experiences as a disease. I respect your (and anyone else’s) right to view things that way. My goal is simply to suggest that there might be other ways of looking at such experiences.

      Thanks again for your thoughts and comment…

      Report comment

      • I sat down and tried to remember any such traumatic experiences which might have played a part in the onset of my schizophrenia. Unfortunately, nothing noteworthy came to mind. I’ve had a pretty lean childhood, my parents were both healthy and dedicated, I was well nurtured and performed well during my 12 first years of school. It’s true that once I entered college I went through a depression because I had left my hometown, and the quality of my mental processes has dropped a notch ever since. But I firmly believe that it’s our response to stressful situations that puts us at risk, and this response is embedded in our very dna, we are programmed to react in a certain manner therefore a possible approach to tackle this predisposition would be for one to pussyfoot through life, avoid all complications and dangers which doesn’t seem like a viable option for most people.

        Report comment

        • I agree with you that we all have different temperaments and sensitivities to life that “predispose” us to certain reactions. In this particular article, I am trying to make the point that psychosis is a very understandable and common response to trauma (as it is defined by society) yet is almost always ignored to the detriment of many. On the other hand, some people may have different sensitivities to life and need not experience some overt traumatic event to breakdown under the pressure of our society. In my opinion, and it is only that, society is what is crazy and people who are sensitive souls are prone to break down when overwhelmed by the sickness of our modern world. While I agree that some may be more predisposed to react in particular ways or have greater difficulty with the world as it is, personally I do not view this as an illness or weakness. I find that an illness perspective lends itself to helplessness and hopelessness. I might ask how can a person like yourself find use in your sensitivities? How can you honor the unique qualities that set you apart from our sick and traumatizing world? Even if one accepts that an illness is in fact at the root of such difficulties, there are places and environments where a more subdued and sensitive character is valued. In any case, I really appreciate your comments and wish you all the best on your personal journey.

          Report comment

  20. “There also was a lengthy discussion about how experiencing multiple traumas (unlike a single trauma) results in a shutting down response rather than hyperarousal and increased physiological activity. This includes: loss of emotion, loss of memory and language, shutting off of cognitive processing, deactivation of the brain, loss of physical sensation, social disengagement, miscommunication, and social withdrawal (McTeague, et al., 2010).”

    Is there any way you are able to write a blog that elaborates on thi s paragraph? .I would love to know how people look as they progress through this state, if they can be shut down cognitively for years and still recover. I wonder if people can be in this state without having undergone big traumas that are obvious to the outside world. It seems that this condition is very similar to what people refer to as severe psychosis with all the negative symptoms.

    Report comment

    • Sa, your assertion that this passage sounds like “negative symptoms” was precisely my point! This is an area that I am very interested in exploring further, but have not yet done so. Your suggestion to elaborate on it in another post is well-received…I should have time in a couple months to sink my teeth into that challenge and I hope when done it might elucidate something interesting. Thanks for the comment!

      Report comment

  21. Noel, Your concerns expressed here were sort of central for me the first time I read your article last year. I had looked at this longer ago

    http://www.psychiatrictimes.com/articles/reexperiencinghyperaroused-and-dissociative-states-posttraumatic-stress-disorder

    and used it to try to get my psychiatrist to talk to me about anything relevant to what my experience is like. My daily life involves waking up and not being manic or delusional and seeing this is the second worst thing, since I am still messed up with stress and the challenges presented by the mediocrity and artificiality of the allied mental health industries. Bringing up the ways that clinicians have failed to appreciate what they are doing as opposed to what would work better or at least help better to explain what might be remedial has kept me from finding any comfort zone with service providers in my area. I believe there just is not excellence to be had widely in any of the fields. Nor is anything on track to assure that there will be. The default position among clinicians is to comfort each other, in a sense, about how bad these mental illnesses are, and how hard it is to do anything about them for people. I see your panel here as not innocent of that.

    Report comment

    • I’m sorry to hear of your struggle, and even sorrier that it seems to be the norm and not the exception. Interestingly, the author of the link you provided is the same person who frustrated me to the point of writing this article in the first place. I do have hope that things are slowly changing (there will be a new post to this effect soon), but I don’t think that most of us in this generation will benefit much from it. The only solace is finding peers and like-minded professionals who can support you, even if they can only be found online. And meditation. Learning to honor yourself and your experiences even when no one else will. I wish you all the best…

      Report comment

  22. Dear travailler-vous,

    I also am so sorry and surprised to hear of your ongoing struggle. The reason why I say surprised is because I have found that you move through the comment sections of posts ‘peppering’ the comments with encouragement and kindness, providing lots of references and information, and also making respectful but strong statements about things you don’t believe in. I think it takes a lot of mental strength to be able to do this, particularly admist the struggles you experience on a daily basis. I wish you continued strength and perseverence.

    Report comment

    • Sa – I want to underline that I feel real gratitude for your kind acknowlegement here and felt encouraged initially the first time of getting to read it through. I wish that everyone who gets caught in the act of trying to learn something for themselves, like you caught me, could experience the disclosure of cleverness and discernment, perspicaciousness, and sensitivity that your words expressed for me and that your taking the time and interest showed. Between Noel’s steadfast committedness and your encouragement here, and many other things about the MIA forum for dialogue and information, I was able to proceed directly from finding my feelings validated on to identify and work through definite recovery steps immediately after settling on what self-help methods to employ. When you clear the bar for some positive shift in your attitude or understanding, at long last, or manage to detect welcome change in your behavioral disposition, you notice yourself more comfortably attuned to the here and now, and feeling like making an outpouring of gratitude is just perfectly natural, then. Your comment to me here came before these things became actual for me, while I was still busy getting familiar with Noel’s working theories and views and her authentic manner for framing her explanations, so I had to limit my response to the show of gratitude implied in my first reply to you above. My feelings are more available for me to make reference to them now and words are coming to more easily to me, too. As usual, the big surprise in all of this, attaches to the fact that recognizing myself in my previous form happens with more clarity than it did while stuck like that. I hope that we can trade between the two of us in future exchanges what seem like the more dynamic objective measures and intervention techniques that seem worth putting faith in. For now, I’d say that the most important factor in approaching others’ who are emotionally in need is an expert grasp of the fact that communication is itself a dialectical process. My notice of this has happened strikingly a number of times while trying to disambiguate my thoughts and intentions, having just experienced a flasback triggered by passing traffic, with me in the middle of events mental and worldly, simply trying to comment coherently, and at less meandering length. Noel herself seems to have the complete practical understanding of what this ineluctable process of disambiguation means down to her marrow. In addition, although not pretending to speak for her at all, in my view she exemplifies rigor in her awareness of the fact that in attempting to express ourselves, indeed in trying to relate or function at all, due to our reliance on linguistic competence, we are each bound to find ourselves immersed in, and variously struggling for some level of success at disentangling our needs from our understandings of how best to pursue them. Her articles have proved to bring out for me the problem with the often distracting appeal of taking refuge in some sort of rationalistically isolated inner life. I feel like they’ve also led me to see that every kind of conscious experience implicates us in this very process of disambiguating our thoughts, perceptions, and feelings, in regard both to meanings as well as intentions and beliefs all the time.That’s a mouthful, but it amounts to saying we are not that different from each other, and indicates a big part of why everyone, no matter their history or condition, is a moral equal.

      Best of luck to you–Sa.

      Report comment

      • 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!

        Report comment

  23. Dear Sa, I look to gain appreciation of your family’s situation as best I can in reading your comments. You are reaching out to help yourselves, but you matter to me for reaching out on my behalf and for how that shows Team MIA what’s up outside of all they have tried to imagine on our behalf. I am sorry sometimes to have to get busy and reveal that my knowledge and understanding limits my interest to one of concern for the feelings of the authors, you know. But they are doing their work, and I’m not doing any, so we have to live with this separation between us–i. e., with them saying what to think about for ourselves, while urging us that what they think is true is worth trying to believe; with us giving it a try.

    Report comment

  24. Hello Noel,

    I know this is 3 years too late, and I’ve already read your thesis which I enjoyed and reviewed on my blog. But someone mentioned this blog and I wanted to check it out for myself.

    We all know the standard answer in the d.i.d. world of the difference between d.i.d. and schizophrenia which is: with d.i.d. the voices are internal whereas they are external with schizophrenia. I say, “Says who?” I wonder if their reticence to really answer your question is because IF they did, then they would be taking on the entire biological model whereas at this point, they have carved a little niche out for themselves in the DSM for dissociative spectrum disorders based on trauma despite the prevailing model.

    When my wife and I first began the healing journey she called her voices ‘aliens’. It was I who gently and repeatedly told her, “No, Honey” and slowly with time and my continued insistence, she began to embrace those voices as other parts of her larger, initial self.

    I realize your desire for first-person experiences probably doesn’t include SO’s, but it should because we are the ones who see the big picture. My wife is still caught in the middle of the dissociation and though I have 7 of the girls connected to varying degrees, girl #8 still is ‘mostly’ disconnected/dissociated.

    So what would I say dissociation is after having shepherded the 8 girls in my wife’s system to varying degrees of connection? I think it’s more than just ‘vertical’ if I understand what your colleague is saying. There is the conscious dissociation between girl #8 and the other 7 girls. Consciously they have ZERO ‘consciousness’ that they are interacting at all, in any way.

    But this is where it gets messy, because they ALL claim to not know what the other group is doing although they do many, many activities concurrently and will give me identical descriptions of what they have done during a day, often even using the same words. They will also relay information to me that comes from the other ‘group’ (girls 1-7 being in the main group as they can all communicate to various degrees and girl #8 in her own group). I am regularly told by girl #8 various decrees and dictates by my wife’s host or others even though they supposedly have no ability to communicate with each other. And the main group will similarly tell me things that girl #8 feels or wants.

    Moreover, girl #8 has varying degrees of connection to the main group. Sometimes she will pull information from my wife’s ‘main frame’, what I call general knowledge information. She quoted StarTrek’s 5-year mission to me while we were biking last week, but other times she will be completely clueless about general knowledge information and I will literally have to teach her basic skills, or more often than not, being 3-years old in her perspective, she wants me to care for her, even though she can drive the car on her own, surf the internet and she, like most of the other girls, always scores in the genius levels when they take those silly little tests on the internet.

    Now I will explain that I have been working with girl #8 for the last 2 1/2 years to help her bridge the conscious dissociation between her and the other 7. She’s been the slowest of all the girls to break the conscious barrier, but all the while the subconscious dissociation between her and the other 7 is more quickly dissolving especially between her and the girl whose voice she co-opted to speak to me (neither girl #7 or #8 had their own voices, but each of them has co-opted the other littlest of the litttles) as these two are beginning to act more and more like each other, even using the characteristic mannerisms that I have always used to differentiate between the two.

    So, anyway, dissociation…I think I view it as multi-faceted, and multi-directional. I could share so many stories with you how the 8 act together as a group, subconsciously, while the conscious barrier continues and yet they consciously can pass information between the 2 groups which they will then share with me if I ask. But I will keep working with all of them until I can tear down the residual dissociation. I/they still have work to do between my wife’s host and girl#7, but I won’t be surprised if, when, I get girl #8 consciously connected that the residual dissociation between the other 2 girls comes crashing down as well.

    Take care,
    Sam

    Report comment

    • Well, having now read thru the majority of the comments here, and realizing that I am probably speaking to myself, I would like to add a few brief comments. First, my wife rarely had what would likely be termed ‘psychotic’ episodes or delusions. However, from my intimate observations of how the 8 girls in her d.i.d. system function individually, when separated from the group, I could see psychosis as a natural outworking from dissociation because of the convergence of 3 different things going on.

      The first is the ‘arrested development’ that occurs when the various ‘alters’ begin to dissociate from the core personality. This means the alter who holds the specific trauma never matures nor the mental abilities which she controls. So her perspective AND ability to deal with the trauma is essentially frozen in stasis until healing begins which prevents healing from beginning…a perfect vicious circle.

      The second issue is that when we call alters ‘parts’ it does have practical significance which is never acknowledged in the literature. The problem being each alter, each part, only controls ‘part’ of the mind’s abilities and traits which allow for the trauma to be processed. Moreover, the designation of ANP (apparently normal part) and EP (emotional part) by the ‘experts’ is meaningless and irrelevant to anything. These designations only go to show the superficiality of their understanding of how d.i.d. actually works because there are NO normal functioning parts nor are there ANY, only emotional parts!!! They all are just part of the person and they are ALL dysfunctional on their own! (Rant over) Anyway, this is the most frustrating aspect because one alter may control a trait that would aid in the processing of the trauma that a different alter ‘holds’ but until the dissociation between the 2 is breached, those abilities are unavailable to the first.

      I think the last issue would be the various attachment issues that go so much with trauma sufferers. There are a myriad of things that the primary attachment figure can provide a trauma sufferer (affect regulation, safe haven, proximity maintenance, etc) and these are still very much needed in adulthood for the trauma victim BECAUSE OF the first 2 issues I mentioned. When my wife called the other girls aliens, I gently refuted her and continued to exert my pull upon her and the other girls as their primary attachment figure. They had ZERO affection for each other in the beginning, but they were attached to me (because I made the effort to attach them to myself), and that attachment to me is what eventually drew them toward each other and tore down the dissociation between themselves.

      It’s kind of a cruel reality, but having seen what I have and what our son and I provided my wife, I just don’t know how childhood trauma victims who suffer dissociation can heal on their own without those strong attachment figures to help repair the dissolution of the personality.

      Enough talking to myself…

      Report comment

      • Well…I was done talking to myself…but I guess a part of my brain won’t shut off and instead woke me at 2:38…so here I am…continuing to talk to myself when no one else cares. But here goes.

        The ‘state’ of dissociation is a reflection of one’s internal working model (attachment theory) but is known as one’s ‘inner world’ in the d.i.d world of sufferers. Thus it is highly important that the inner world be slowly reshaped to reflect less dissociation. Practically for my wife, this is what I had to do.

        From the start 5 girls had limited internal contact. As I began working with them for their healing [which included 1) securely attaching to me 2) dealing with the lies associated with the past trauma and 3) daily activities to strengthen the neural pathways between the girls that had been atrophied by decades of the dissociation (neural plasticity)] we also began to purposely reshape their inner world. Now I used their belief in a higher power (Jesus) and we ‘prayed’ these changes into their inner world. And so we added features into that inner world which they found conducive to a higher level of internal communication and thus less dissociation.

        But girl #7 started with ZERO internal connection to the others. But somehow the other little, I’ll call her girl #6 even though she was outside with me from the start, began internally to ‘speak’ to her. Well internal ‘speaking’ is not as high a level as internally ‘seeing’ and so over the course of a year or so, I began to reshape girl #7’s visible world until she and girl #6 not only could ‘see’ each other, but I moved her inner room beside girl #6 and eventually they tore down one wall between their two rooms…and eventually they ‘adopted’ each other. At this point they have partially ‘fused’ but unlike ISSTD we always make fusion optional, something in and out of which the girls move according to their interest in what is happening in real life outside.

        Now for girl #7 I was working to connect her ‘visibly’ to girls #4 and 5 as well but that process got interrupted by girl #8 and is on hold. Thus girl #7 continues to communicate internally THRU girl #6 to the other 5 girls. It’s frustrating because I know she has the neural pathways sufficiently strengthen at this point to communicate freely with the others, but it’s the latent fear inherent to the d.i.d. structure, and so she continues to function like a ‘ghost’ to the other girls on the inside and girl #6 is her ‘medium’ to the others for now.

        My wife’s host (girl #1), however, continues to ONLY be able to internally ‘speak’ with the main 5 girls. She is still too scared to allow us to open a visible connection to them from her inner room and so foundationally she remains dissociated from them. What that means is her ‘default’ is to act separately from them because she views herself internally as if she IS separated from them, but she can and does interact with them constantly on the inner ‘verbal’ level.

        The last girl, #8, is still internally disconnected both ‘audibly’ and ‘visually’. I have done things with her to slowly change her inner room to make it more pleasant and hospitable because she started out with, literally, a dark and isolate corner. I have also given her internal ‘clothing’ and a new ‘hairdo’ which is important so that she feels ‘pretty enough’ to visibly meet the other girls at some point. But she continues to fear meeting the others…and it is that inherent, structural fear that was built into the system during the trauma which continues to perpetuate the internal separation. And until I can address that fear with something desirable enough for each girl to overcome their fears and internally connect, they choose to remain internally separated even though I have done the neural plasticity work with them to revitalize the pathways between them. As I said in my previous comment, there is conscious and subconscious communication going on between all of them, even girl #8, but until they can consciously recognize it…they view themselves, internally, as disconnected/dissociated.
        Sam

        Report comment

        • Hi Sam –

          Even 3 years later, I do still read every comment that is put on my articles. I thought it better to respond here than to the email you sent.

          It is wonderful that you have been able to find meaning and a framework that works for both you and your wife. I know you put much energy into trying to understand and help her in her struggle, which is admirable. At the same time, this frame is not necessarily the same for everyone who has similar experiences. In fact, the idea of multiple selves appears to be, from a neurological standpoint, one that is universal – so, the idea of “fusion” or “integration” is one that, personally, does not resonate. I have found that using parts work is extraordinarily helpful for most of my clients, whether considered as “dissociative” or not. I only say this to make the point that your perspective is, of course, entirely valid and important…and also, it is one among many. Your story is important, and you should not shy away from making it heard in ways that help others feel connected to you.

          I do think SOs have a perspective that is most important and does offer an alternative to that of the professional. The perspective of the family member, more generally, actually is quite celebrated and heard often. There is definitely a place for it.

          And also, it is not the same as a first-person perspective, which happens to be my interest and is actually quite rarely heard or valued in its own right. What we see from the outside is not the same as from the inside, and is often clouded by one’s own internal experiences and needs.

          So, while I do not dismiss your perspective and find it to be incredibly important, it also is not something I, personally, want to write about or research. The first-person perspective deserves a spotlight of its own and my focus on it is not meant to invalidate the perspective of others.

          There are many researchers out there who are more interested in a family member or SO perspective, and those are the folks you need to seek out if looking to have your voice heard in a more formal manner. Otherwise, trust that your voice is heard and appreciated by so many both here and on your blog. The 2 commenters who responded so quickly to you are evidence of how your voice gets heard and has great meaning to similar others who need guidance and/or support.

          Report comment

          • Noel,

            just so you understand, we are NOT seeking fusion or integration as ISSTD pushes. Quite the opposite, we are seeking a ‘group integration’ where the dissociation is gone so that all 8 girls can learn to work together and yet each one’s unique abilities and perspectives are maintained…

            If there are ‘experts’ out there seeking the input of the SO’s I’ve never run across them in the 9 years I’ve run my blog and reached out all over the internet trying to connect with others, but maybe some day I will.
            Thanks for taking the time to respond.
            Sam

            Report comment

          • Hi Noel,

            I also believe the first -person perspective is quite rarely heard or valued in its own right. We have found this in our never -ending search for first person accounts to aid us in our understanding. And to clarify, the comments that I added about the importance of SO insights, were not meant to imply that it should be YOU who collects data from SO’s as well.:))

            And also I have not found, as you say, that “the perspective of the family member, more generally, actually is quite celebrated and heard often”; at least not for the SOs (of people described to be in ‘extreme states’) who reject the narrow narrative of mainstream psychiatry. My experience has been that there are very few places (MIA is one of the few exceptions) that welcomes those voices. (If you know of some good researchers who have studied this type of SO experience, – I would so appreciate getting their names!!!!)

            Report comment

          • Ah, yes, if we are talking about hearing a from or about people who reject mainstream psychiatry…well, that’s pretty rare no matter what population we are talking about! Thank goodness for this site. I was thinking more about NAMI, for one, and also the fact that clinicians and researchers are often family members (though this is not widely known in any official way, but there have been a few studies). There are also numerous books and blogs out there along the lines of “How to live with a partner who has X” (try searching for specific things, not diagnoses, for instance,unless it’s narcissism or BPD which seem to be quite popular). And, I do know that several people have done doctoral dissertations on such a topic (and that’s just in my area during my time in school!). If I come across something specific, I will remember and I’ll post it here.

            Report comment

          • Noel,
            I’ve thought about your reply for days. I’m disappointed, to say the least, by your lack of curiosity. You and your fellow experts are only looking at the tip of the iceberg in an artificial, clinical setting. My fellow SO’s and I experience the outworkings of dissociation 24/7 in every kind of real-life setting, and yet, respectfully, you like every other expert I have tried to engage don’t realize how little you know. My wife’s counselor has access to 3 out of the 8 girls in her system for an hour and a half each week. I have complete access 24/7. On top of that the experiences you seek from the ‘1st-person’ point of view are DISSOCIATED(!), but you must not understand what that means. It means you will NEVER get the entire picture no matter how hard your clients try to give it to you, because I doubt you have 100% access like I do.

            Kathy Steele used to brag about her vast experience with d.i.d. patients on her website…40,000 hours. I passed her a long time ago.

            Good luck. I really do hope you find what you are seeking. I am sorry that you feel I have nothing to offer you.
            Sam

            Report comment

          • I’m sorry you are so frustrated, Sam. I will not get into an argument with you about who is more knowledgeable or who has the more privileged perspective and what I do or do not value. You have no clue what my experience is or is not or what I do or do not understand and I’m not going to defend myself to you. I listen to everything that is written here and have been open to all that you and others write – this does not mean I have to write about it myself or do research on it. Nobody is without bias and nobody can ever understand another person 100%. We don’t even understand ourselves 100%. And your idea that an individual cannot allow themselves to be known unless someone else does the telling for them is a curious one. I do hope that you find someone to validate and hear your words better than I seem able to here. With respect – Noel

            Report comment

          • “And your idea that an individual cannot allow themselves to be known unless someone else does the telling for them is a curious one.”

            When you twist my words thru your biases and lack of experience, there truly is no place in which to have an intelligent conversation.

            Peter Barach called d.i.d., at its foundation, an attachment disorder. Hence. we who are the primary attachment figures WILL have the primary roles in healing those attachment issues. I have 7 out of 8 girls in my wife’s system securely attached to myself and the 8th girl almost there. That is something no ‘expert’ can possibly do, and it wouldn’t be ethical if they tried. And until the ‘experts’ learn where they can best function in the healing journey and how to help those of us who MUST do the heavy lifting in the trenches, those who are dissociated will continue to suffer.

            Sam

            Report comment

  25. You’re not talking to yourself Sam – as the parent and carer of a dissociative voice-hearing son I am reading your views and insight with great interest, and making the odd cry of ‘yes, exactly’ as I do so.
    The value of ‘SO’ / second person knowledge for example – although not as insightful as yours I did offer mine to Noël at the time of her search for first person experience. Maybe she will broaden the criteria for a future study ?

    Report comment

    • I agree…we each have so much to share about helping 24/7 ‘in the trenches’…but I have yet to find experts who understand this. I’ve written dozens of ‘big wigs’ from ISSTD and they all blew me off. I finally gave up.

      Report comment

      • …and in particular we can provide information about the time periods when our loved ones are suffering so severely that there is no way they are communicating to others (e.g. through discussions or writings) about what is happening for them. So without the input of S0s who do not see nor accept the narrow narrative provided by ‘ biological psychiatry’ , a lot of information that is provided about people during these time periods are the observations of people within the mainstream system (observing people who are contained in hospitals wards etc.) I don’t know , for example, what we would have done if we had not come across Dante’s Inferno, which told Katherine Penney’s story from the perspective of her psychiatrist, Daniel Dorman. We also, of course. listened very carefully to Katherine Penney’s first hand account and learned so much from that about how our loved one MIGHT be feeling inside, but Dr. Dorman’s book also helped us in a different way showing what Katherine’s distress ‘looked like’ to others which allowed us to recognize patterns of similarity, and which gave us hope and insight about how to support.

        Report comment

        • When you are ready, if you would like, we could brainstorm. The non-verbal ways of connecting with a loved one are endless…as varied as there are people, and even though each of the 8 girls in my wife’s system are only ‘part’ of my wife as a whole, the desire/desperation to connect to each one taught me just how many different ways each of us have of connecting to our loved ones. Sometimes it takes a little time, effort and thinking about ‘what makes my loved one ‘tick”, but I have yet to meet a girl in her system that I couldn’t connect with in some way that was also unique from the other girls as well as general ways which most or all the girls enjoy…

          Report comment

          • Break through in communication!!! I am so very, very thrilled about what happened in our world today and I wanted to let you know as it happened after I used some of the ideas your wife taught you to use to help her with some of her difficulties (the idea of counter balance that you described in the comment you made to Julie about eating issues on The mad pride perspective …..article). Please also thank your wife for me and thank her for allowing you to describe your journey together in the hopes it might help others – it has very certainly helped us!!

            I wanted to post this on “A Mad Pride Perspective on Borderline Personality Disorder” where the discussion was, but the comments there have been turned off so this was the other place where I thought I could find you’anonymously (as I am hoping you still have the notify me button on)

            Noel I hope it is okay that I comment about this here. It is not completely off topic, as our break through in communication was helped along by this article, as well as by the first hand comments of violenttransempire’s comments in the Mad Pride article thread. (as well as more generally by all the info I have collected over the years from this site).

            Although I won’t go into too much detail (much as I am dying to do!!), this article of yours first confirmed what I had been feeling, that extreme states and dissociation really couldn’t be divided into distinct different entitites…particularly not by the foolish ‘symptom descriptive’ method of the DSM. So although I had already spoken a lot to my loved one about the heros and heroines of the extreme state world (Eleonar Longdon, Katherine Penney etc) and provided them with lots of opportunities to see videos like Stuart and his voices, I started to realize that their ‘framework’ might be different, and although I may have been helping them feel less afraid in terms of voice hearing, that wouldn’t completely help if they had feelings of being multiples (I do not know the right terms to use so please forgive any wrong use of vocabulary). Then reading yesterday the comments made by violenttransempire, I realized that the rare times that my loved one spoke they also used ‘we’. [I used to think that it was because they were including us in their comments (e.g. Can WE go there)], but now started wondering if it could have something to do with being multiple. For years my loved one has been what some have described as catatonic (not only rarely talking or communicating, but also not ‘doing’ anything either). Well yesterday I ‘wondered’ with them about the framework of multiples, and described how I had been reading comments from someone who felt that way (violenttransempire), and who was very articulate, and who seemed very interesting and fair-minded etc. etc. (I always think role models can be so important to reduce fear). Later in the day when they felt unable to do a simple daily living thing, I asked them if there was ‘anyone there’ who could do the thing I was asking them to do, and what happened after that was truly transformational!! Without going into detail, there was first a nod in agreement (that there was someone there who could do it ) and then a whole scenario and ‘conversation’ followed ( mostly non verbal with the occasional written and verbal word included), After this, more daily tasks were completed in the same way.

            I have no idea what tomorrow will look like, or how long and complicated a journey we are on. But what happened yesterday denied my worst fears that severe cognitive damage could be underlying the catatonia. (as is often said in the mainstream literature) Yesterday I saw a whole active mind and world at play.

            Samruck2, I hope that you do write articles for MIA one day. I feel you and your wife have so much to offer to the world and I don’t see why it should matter if she decides she would rather work in the background, guiding your contributions. In the meantime I suddenly realized that we could communicate anonymously by opening a forum to discuss these issues further. (Not that I am suggesting SO contributions should always be sidelined to ONLY comments and forums:)) ) Although I thought the name of the group ‘anti NAMI’ pretty funny when Julia suggested it, I personally would prefer a forum name that was more inclusive of all the groups who comment here. I feel that our breakthrough came as a result of all the groups (survivors, SOs and professionals,) discussing these issues together.

            **just as a footnote…I think an exciting topic (at least to me although it made be common knowledge to those in the did world) would be the parallels to the “hearing voices movement’. ‘Multiples’ in themselves are not necessarily problematic in the same way that ‘hearing voices’ is not problematic in itself. It seems multiples can be an expression of trauma and it is thus the trauma that needs to be addressed (as I know you know). Likewise trauma can result from the fear of being multiple (just like those who hear voices can be traumatized by peoples reaction to them hearing voices, the media presentation of symptoms etc, etc.)

            Happy Holidays everyone…I cannot remember the last time I felt so happy!!!

            Report comment

        • Sadly the time elapse in the midst of me editing my comment above…so I guess I will do a ‘redo’ here in the interest of clarity.
          Emily, if possible, please delete my first response.
          So again with edits:

          …and in particular we can provide information about the time periods when our loved ones are suffering so severely that they are not communicating to others (e.g. through discussions or writings) about what is happening for them, at least not at the time it is happening to them. (Retrospectively, they may or may not feel they remember all that was going on during these times.) So the input of S0s who do not see nor accept the narrow narrative often provided by ‘ mainstream’ psychiatry, could provide a valuable counter balance to the observations made about people on hospital wards etc. who are all following very similar (often forced) treatment paths.

          I don’t know , for example, what we would have done if we had not come across Dante’s Inferno, which told Katherine Penney’s story from the perspective of her psychiatrist, Daniel Dorman. We also, of course, listened very carefully to Katherine Penney’s first hand account and learned so much from that about how our loved one might be feeling inside. However, Dr. Dorman’s book also helped us by showing what Katherine’s distress ‘looked like’ to others, showed us what her ‘progression’ looked like from the outside. This allowed us to recognize patterns of similarity, and gave us hope and insight about how to support, and what to expect. I believe Katherine Penney found his book very validating about her experience.

          Report comment

  26. Sorry ..duplicate.

    I somehow posted the above reply (about our breakthrough) twice and have deleted the second one here but now cant edit the first:(( I noticed I wrote ‘your article here’ when I should have wrote .Noel’s article here…

    Report comment

LEAVE A REPLY