Centering Lived Experience

Kenneth Blatt, MD
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My office neighbor at work, a 50 year-old community clinician and gentle soul, originally from Colombia, came into my office with a question recently. I have always found him to be sensitive, caring, and curious about the feelings and experiences he encounters in his work. He asked, “So, the young woman you see who carries a doll with her… what is her diagnosis? What medications is she on?”

“I’m very curious, why these questions?” I replied. He explained, “When I was in training in Columbia, I used to see many women who carried dolls. It was a time of great violence in my country. These women lost their husbands… some saw them killed and lost their babies too.” I asked him, “What did you think then about why the women were carrying dolls?” He gave me a number of beautiful descriptions of possible meanings, given the context he and the women were in, about why women might carry a doll with them.

I asked him then, why should it be different in America? We may not know the context or full story of my young adult woman carrying her doll, but might we inquire? Try to learn her story, try to learn what happened to her? I went back to his story in Columbia and asked him how he approached helping the women who carried dolls. He told me, “Support and listening to all they went through, all the pain they experienced.” I asked again, “So why should it be different in America?

I suggested to him that although he didn’t know the diagnosis and medications she was on, he knew what was more important. He knew that people have their stories. Their stories become a context that frames how people see others and the world. He knew that terrible traumas happened that influenced their lives and contributed to the behaviors he was witnessing. But then he comes to America and receives “training,” and “forgets” what he already knows and has experienced. It is as if he is discounting his own lived experience as not relevant to his everyday work.

A bit more about diagnosis.

Once a month, a consultant comes to visit our team. He is there to offer suggestions regarding questions we have about working with various clients. A clinician tells the consultant about the client, but how? Our center prides itself on being “recovery oriented and trauma informed.” What does this mean? It depends. If you are an administrator, you have spent much money educating the staff on the principles of recovery. But teaching principles versus living a principle in everyday practice are vastly different.

For example, most clinicians continue to “present” to the consultant, “This is a 22-year-old young woman with a diagnosis of bipolar disorder coming to the center for…” The clinician presents the hospitalizations the client has been through and much else regarding their stops along the yellow brick road of the mental health system. Later on, nearing the end of their presentation, there is some information regarding their life story and traumas. But almost always near the end, almost as an afterthought.

People underestimate the effect of “her diagnosis is…” This is a powerful and subliminal message. Most folks have predetermined images of what someone with a given diagnosis looks like. You are already judged. For example, there are images in each person’s mind of one with “schizoaffective” versus “bipolar,” and the scourge of any center: “the borderline!”

In effect, our young people continue to carry their labels. Sometimes on first introduction a young person will say to me, “Hi, I’m John and have schizophrenia.” I’m not kidding; wish I were. The first time this happened I was stunned and not sure how to respond other than, “Might I call you John?”

Lately, after a number of discussions, we have been changing our practices around this issue. No longer do we give a diagnosis at presentations. We place the young person’s story, as told to us, front and center. People listening rarely ask “What is their diagnosis?” now that lived experiences are central. We are providing a sense of their struggles. We are trying.

We can’t be talking about “bizarre delusions,” another dehumanizing term. People hold beliefs that are meaningful to them. That they can’t communicate these beliefs to us in OUR language doesn’t make their beliefs bizarre. How would it feel for any of our staff to go to China knowing no Chinese and attempting to communicate, only to be looked at as if we were “bizarre”?

We can’t maintain the notion that hearing voices is only an experience of those with an “illness.” Voice hearing around the world is as common as left-handedness. Voices need not be eradicated. For some persons with lived experience, I am told that “taking away my voices is like amputating my left arm.”

And we can’t continue to provide case formulations that are simply repetitions of some history. Recovery case formulations use plain language to delineate factors in the person’s life narrative that have contributed to their current struggles and “symptoms.” For example, the person in recovery believing that she had triplets when she was eleven is not seen as having “bizarre delusions” that require medications per se, but might in fact have been gang raped by three men. We have to at least be open to these notions, no matter how painful the dark side of our human nature is. These are but a few of the everyday communications that can be discussed as we move to becoming a truly recovery-oriented, trauma-informed and sensitive team.

Of course, you are thinking of a very basic principle of recovery; as some state, “nothing about us without us.” Developing truly collaborative relationships remains a goal. Having our young person with us presenting their story to the consultant and listening and taking part in our discussions and formulations is still a dream. There are so many hurdles. There are so many fears. There are so many threats.

Back to my neighbor at work.

We are all peers in the cauldron of lived experiences. How sad that we provide training in America – and export training around the world – that in effect dehumanizes lived experiences, throwing it all on the ash heap of irrelevancy. Has the DSM become our pagan God?  What is doll-carrying disorder, or any psychiatric diagnosis? Why do we need 3 out of 5 or 6 out of 8 criteria to make this or that diagnosis? So that we can prescribe medications to treat it? We are drifting further away from our essence. We are in danger of being consumed by our own DSM’s and alphabet soups of “evidence based treatments.” What will be left of our humanity?

35 COMMENTS

  1. As a former high school religion teacher and a hospital chaplain, I know the importance of stories. Over time as a teacher and chaplain I came to realize how important a person’s individual story is and how important it is to hold that story as a precious and unique gift if they choose to share it with you. This is even more important now that I work as a peer on the units of a state “hospital”. Each person’s story gives me a window into their lives in some small way; the stories function as doorways into forming relationships as people invite me in.

    I’ve always wondered how psychiatrists could ever get to know their “patients” when they give so little value to their stories. Four of the five of the ones who dealt wit my case while I was in the system got nervous and impatient when I tried to share my story with them. I’ve come to believe that most of them don’t care to know their “patients” better than they do because they believe that they have all the answers. After all, when all the tools in your tool chest are hammers then everything looks like a nail to you and you don’t need to know anything about that nail to pound it down.

    Thanks for sharing this. It gives me hope that there are places out there that are trying to do good work in the right way, respecting the individuals that they deal with.

  2. One-stop diagnoses and dangerous drugs. That’s what the system knows, understands, and offers. That’s why I kept my young child away from the system(s) whose narrow, ridiculous lexicon for children is comprised of ADD, ADHD, ODD, IED, (and worse); and why I did the work necessary to help his development myself at home. No education degree, social work degree, psych degree, or medical degree necessary to raise a difficult child. You just need love and a few active neurons.

    Liz Sydney

  3. What a great article. I am currently a PhD student and my research dissertation relates to the lived experience of nursing students who care for individuals diagnosed with borderline personality disorder. I believe that it is imperative that student nurses, in their pre-registration education, learn how their attitudes, beliefs and opinions can have a significant negative impact on the lives of the individuals that they serve.

    The power of phenomenology in nursing and medicine is immense, but so little research has been completed versus quantitative studies. I am an advocate for phenomenology and the lived experience, as it provides a unique insight into individual experience that can develop new knowledge and learning.

    Ken, you are correct when you talk about the DSM and its power within psychiatry. In my opinion it is a disgraceful way to label human behavior, however it shows how little psychiatry considers the individuals it serves and how little psychiatry has moved on within the past 100 years.

    Regards, Nick.

  4. Great article, Ken. You are doing a great job to have the culture change at your workplace so that there is more focus on the person’s story and less on the label.

    It is indeed disturbing to see the discourse that is so common in our country about “having bipolar disorder”, “being a borderline”, “living with schizophrenia”, and so on. Recently, it’s kind of perverse of me, but when I see some mainstream news story or NAMI parent say, “this person lives with schizophrenia”, I start laughing and have this image of aperson sitting in a living room with a monstrous demon sitting in the chair next to them, all day long… as if they are literally living alongside this fearsome, inscrutable, chronic, all-negative, monstrous disease-entity which they are fated to live with forever. That’s not that far off the presentation of “schizophrenia” that gets communicated by poorly-educated psychiatrists and NAMI families. But of course, there is no single disease called schizophrenia; schizophrenia is a not a concrete thing… using the defenses of fusion and splitting heavily, and defending against terror, rage, and despair via heavy use of these defenses along with denial/projection/avoidance etc, is not a disease or a “thing.” It is a lived experience, and one that is transformable.

    On my site, I wrote an article titled, “Why BPD Should Be Abolished, and What Should Replace It” that you might be interested in, here:

    https://bpdtransformation.wordpress.com/2015/06/26/26-why-bpd-should-be-abolished-and-what-should-replace-it/

    By the way, if you concretely answered your colleague’s question about what diagnosis this person he didn’t know had, and what drugs she was on, wouldn’t that be an invasion of privacy of the client?

    • Oh and Ken, let me say it again: psychiatric drugs are not “medications”. I hope this will get through to some people eventually. If you think labels have an important potential to influence people – and this article suggests you do – then perhaps you will consider that labeling generalized psychoactive compounds as “medications” (often described in the press as comparable to insulin for diabetes) is misleading and causes many people to mistakenly believe that people on psychiatric drugs have an “illness” or brain disease, which is being treated by said “medications”, when in fact these drugs work no differently or more specifically than various illegal street drugs in influencing mood…

      • Am very much in agreement about the use of the word ‘medication’ in psychiatry/behaviour medicine. It’s a massively powerful signifier. Children learn early that ‘drugs’ are ‘bad’ and/but ‘medications’ are ‘good’ (healing, necessary, and beneficial). It’s really insidious. Even the best-intentioned clinicians clutch onto the word ‘medications’ like a magical totem and can’t let it go.

        Liz Sydney

      • Hi BC, I would invite you to please check out my site, linked above in my reply to Nickfitz. On that site I elaborate on the developmental understanding of borderline states of mind, which I understand through my own experience, as well as from reading authors like Fairbairn, Masterson, Kernberg, Kohut, and other more recent writers. To me understood properly borderline states are not an illness but instead a pattern or way of relating based primarily on neglectful/inadequate/abusive experience with the world and other people.

        Below I will copy an excerpt from one of my longer articles about the Fairbairnian approach to understanding trauma / borderline states. If I wrote this article today, I would write it a little differently and not use language like “borderlines” to describe people…

        ————–

        Object Relations as a Theory

        Most people intuitively understand that our minds are filled with internal “images” or representations of people based on our experience in the outside world. In fact, we have many different images of ourselves and of other people inside our minds, and we often fantasize about these images when we are alone. These images could also be called emotional memories.

        These images or memories have feelings attached to them; they are a combination of cognitive/intellectual knowledge and positive/negative emotions. They are like our minds’ “code” for the knowledge and feelings we have toward ourselves and other people. We use these images as a map to understanding ourselves, others, and what is possible for us as we relate to the outside world. These ideas very roughly explain “object relations theory”, which is used by psychodynamic therapists to understand problems including BPD.

        The Endopsychic Structure of BPD

        Fairbairn created a model for how the abused person managed internal psychic representations of other people. He called this the Endopsychic Structure. This model explained the behavior of individuals who would later be diagnosed with Borderline Personality Disorder.

        In later versions of Fairbairn’s object-relations model, healthy development was promoted by a predominance of good, comforting, loving experience in early childhood relationships. A secure attachment to the parents allowed the child to confidently explore the world and to develop mature relationships as an adult.

        Fairbairn noted that good relationships in early childhood promoted the development of ego functions like tolerance for ambivalence (seeing things as mixtures of good and bad), frustration tolerance (being able to sacrifice short-term discomfort for long-term gain), the ability to comfort oneself, the ability to be alone and not feel abandoned, etc. The reader will recognize that these are exactly the ego functions that modern-day BPD sufferers do not have.

        Fairbairn called the mature adult ego the “central ego”, and noted that it contained a mixture of positive and negative perceptions of self and other, with the positive being stronger or integrated with the negative.

        By contrast, the borderline or abused person had a “split ego.” Fairbairn described how when abusive, neglectful experience predominated in childhood, the child seemed to hold apart the mainly negative experience in one part of his mind, and to keep the occasionally positive, redeeming experience in another. Integration (seeing people as mixtures of good and bad qualities) could not occur since it was too threatening. There was no reason for the abused person to combine the two sets of images and see how weak the good experiences had been and how helpless they really were, until the ratio of good-to-bad experience improved.

        Fairbairn realized that the abused person’s view of themselves and others was completely unrealistic, although they had enough of a hold on reality to avoid permanent psychotic regression (called schizophrenia today). Instead of seeing the outside world in shades of grey, the borderline saw people as all-good or (usually) as all-bad, and related to them as such.

        Everyone has slight distortions or differences in how they see the outside world, which is why we have the truism, “perception is reality.” But in the borderline’s case, these distortions of other people are massive and create serious relationship problems, since people are not nearly as bad or as good as the borderline thinks they are. People do not normally appreciate being the target of projections by borderlines who view them as saints or demons.

        The Attachment to the Bad Object and Rejection of the Good Object

        The borderline’s unrealistic view of the outside world involved the belief that most people were untrustworthy, uncaring, rejecting, “bad”, etc. In other words, the borderline projected the original “bad object” experience with their parents onto new people they met. The “bad object images” – all the memories of abuse and neglect from parents – dominated their expectations of the outside world. They were emotionally blind to the reality that many kind, genuinely helpful new people existed.

        Not only were borderlines relatively unaware of potential help, but they actively rejected it when it appeared. Fairbairn saw that a new, helpful person could easily be mistrusted and seen as someone who would eventually disappoint, abandon, or turn on them. In this way the borderline feared that a new “hoped-for good object” would morph into a “bad object”.

        Fairbairn’s “moral defense” described how borderlines blamed themselves for the poor treatment they received in order to, 1) Protect the truly bad parents from blame and thereby avoid retaliation from that parent, and 2) Prevent awareness of the helplessness of their situation (i.e. “If only I were not so bad, my parents would treat me better.”).

        The moral defense created another massive obstacle, because it made borderlines blame themselves as “bad” and judge themselves as unworthy of help.

        The Inversion of the Normative Developmental Process

        Fairbairn understood how the abused child’s mistreatment early in life resulted in adult borderlines who continued to abuse themselves and form abusive, disappointing relationships with adult partners (or, simply avoid positive relationships and remain alone). It is no coincidence that women who repeatedly return to abusive partners frequently, but not always, have borderline psychopathology.

        This is the ultimate meaning of Fairbairn’s “attachment to the bad object.” It means that the borderline individual continually recreates and maintains bad relationships, whether he means to or not. By distrusting potential good new relationships and clinging to people who disappoint and reject him, the borderline remains attached internally (emotionally, at the mental image level) to “bad objects” and continues to believe that the world is rejecting and “bad” like in childhood.

        A dramatic example of the attachment to the bad object appears in Alfred Hitchcock’s film, Psycho. The leading character, Norman Bates, wants to befriend an attractive young woman who stays at his hotel. However, he later kills her (i.e. rejects the internal good object) and therefore maintains the attachment to the bad object, his possessive mother. Norman fantasizes that his mother, who is actually long dead, would be jealous, and would not want him to relate to this potential new good person. Therefore, Norman’s “internal bad object” (the mother) dominates his mind and makes him reject the good object. Norman Bates was actually psychotic, but the object relations mechanisms involved are similar to borderline object relations.

        The writer Jeffrey Seinfeld (in his book, The Bad Object) described how the borderline’s mental processes involved an “inversion of the normative developmental process.” What this means is that instead of seeking out good experience and rejecting bad experience, the person with BPD seeks out bad experience and rejects good experience. In other words, consciously or unconsciously the borderline individual does the opposite of what healthy people do. Borderlines are “attached to the internal bad object” – they avoid accepting, loving relationships, and stay attached to uncaring, abusive ones.

        What is Needed to Let Go of the Attachment to the Internal Bad Object

        In earlier posts, I wrote about how borderlines need to develop a dependent, trusting long-term relationship with a therapist or friend. This builds self esteem, develops basic trust in others, and helps to develop self-control, tolerance for ambivalence (not splitting), frustration tolerance, etc. A healthy ego, able to manage the challenges of adult living, can only be developed through long-term support and love, in other words, through good object relationships.

        • Okay. I read your e-mail. Although I’m weak on psychodynamic psychology and treatments, I’m getting the idea of the experience and the psychological recovery process. I still think my concept of the DSM version of this is close, but I don’t have any more allegiance to the DSM and perpetually drugged states than you do, though I can see certain helpful nutritional regimens to modify emotional extremes without turning you into a vegetable, a la pharmacotherapy.

  5. Ken,

    Thank you for another insightful article! I agree with you that diagnoses often cause great damage. Labels take away from our curiosity and openness toward each others’ stories. Dialogue and connection are vital for people to move forward through emotional and mental health crises; diagnoses often derail this process.

    Thanks again,

    Cindy

  6. It’s encouraging to read this article, which describes something similar to the widespread practice of team formulation in the UK. In this, a team is facilitated to come to a shared understanding, hypothesis or ‘best guess’ about the psychosocial reasons for someone’s difficulties. I’ve written about the approach in my posts on this site. Some examples of recent practice are described in this edition of Clinical Psychology Forum (the monthly magazine of the UK’s Division of Clinical Psychology, Nov 2015.) I’m not sure if this link will work, but otherwise, visit http://www.bpsshop.org.uk Lucy Johnstone

    https://www.bps.org.uk/system/files/user-files/Division%20of%20Clinical%20Psychology/public/cat-1781_-_team_formulation.pdf

  7. Absolutely, claiming a person has “bizarre delusions,” or in my case my medical records state I had “odd delusions,” is a dehumanizing, disrespectful, and dismissive term. And my “odd delusions” were that I was mistreated by this now FBI convicted, criminal doctor.

    https://www.justice.gov/usao-ndil/pr/oak-brook-doctor-convicted-kickback-scheme-sacred-heart-hospital

    Kuchipudi would have killed a lot less patients if the psychiatrist I dealt with had not just dismissed my concerns as “odd delusions.”

    And being trauma informed is important, especially since the medical evidence does seem to be coming in showing that most so called ‘schizophrenics’ are instead child abuse victims. And, as anyone with a brain should know, but very few mainstream doctors claim to know, drugs don’t cure concerns or symptoms of child abuse. But the antipsychotics can create the negative symptoms of ‘schizophrenia,’ via neuroleptic induced deficit syndrome. And they can also create the positive symptoms of ‘schizophrenia,’ via anticholinergic intoxication syndrome. So when a psychiatrist gives a non-brain diseased, child abuse victim or his mother an antipsychotic, that patient will end up appearing to the doctor to suffer from “the classic symptoms of scizophrenia.” I do so hope the psychological and psychiatric industries will some day soon get out of the business of covering up child abuse, by turning child abuse victims into ‘schizophrenics’ with the neuroleptic drugs. We should be arresting the child molesters, instead of drugging up the victims.

    And absolutely, “evidence based medicine,” when it comes to psychiatry, is based upon fraud and misinformation. It appears to me that the DSM is a classification system of the iatrogenic illnesses created with the psychiatric drugs, rather than as fraudulently claimed, a classification system of genetic “mental illnesses.” I do understand this is embarrassing for the psychiatric industry, and I do see how such blinded ‘professionals’ could make this mistake. But the reality is the DSM system should be scrapped, and all doctors should return to their promise of ‘first and foremost do no harm,’ and humane treatment of their fellow human beings.

    And I agree, the DSM did become the pagen God of the psychiatric practitioners, and I’m quite certain the true God is not impressed with today’s ‘mental health’ system. Since my “irrelevant to reality” lived experience took the form of a spiritual journey, in which Jesus supposedly claimed, “all the doctors are going to hell.” Who knows? After learning about “the dirty little secret of the two original educated professions” the hard way, I’ve lost a tremendous amount of respect for both the mainstream religions and the medical industry. But I did conclude from my spiritual journey that Jesus’ theology is one which would bring about peace, thus is a good theology. And it might be wise for the psychiatric practitioners to rethink the wisdom of treating others as they would like to be treated, rather than just defaming and torturing other human beings for profit, and other nefarious reasons.

  8. It seems noteworthy that the various diagnoses in the DSM are so clearly delineated in that they match up quite well with the approved use of the medications that the pharmaceutical industry is hawking. I was a captive of the mental health system for eight years and was not able to recover until I obtained a good living situation and family support that enabled me to wean myself off all medications. In the past fifteen years, I have experienced a full and joyful life and am a constructive member of society, a loving mother to my four grown children, and an involved grandmother to my grandchildren. How sad that the mental health system now shuns the wise shamans.