“You treat a disease, you win, you lose.
You treat a person, I guarantee you, you’ll win,
No matter what the outcome.”
– Robin Williams in Patch Adams
Recently I wrote an article on MIA entitled Trauma, Psychosis, and Dissociation. Several people responded privately with some very thought-provoking questions that I would like to explore and possibly answer to some extent here. Most of these questions regarded the relationship of diagnoses and treatment, which was a subject that I superficially critiqued but did not explicitly analyze. Dedicated readers of the MIA website are all too familiar with the myriad problems that exist with diagnoses in general, the stereotypical (and often untrue) assumptions associated with these various categories, and their lack of scientific validity or reliability. For those who are not as familiar with this research, there are many on this site who have tackled this issue (see: Harm Reduction, Do Diagnoses Injure, Does DSM-5 Matter, How Reliable is DSM-5, Psychiatry-Based Valid Science). I do not wish to echo what has already been exquisitely written elsewhere, but I do want to address some specifics with regard to dissociation and psychosis.
First, though, I want to state that my area of experience and research is with trauma, psychosis, and dissociation. Surely, the following assertions and arguments could be said about any comparative diagnostic categories or phenomena; however, I do not have the knowledge, experience, or research to back up discussions on phenomena related to categories such as bipolar, depression, borderline personality disorder, etc. That is the only reason that I focus on the categories of Dissociative Identity Disorder (DID) and schizophrenia (and their related labels) – NOT because I believe that some other standard holds true for other categories. As a broad statement to begin with, I want to assert that above and beyond anything else, when an individual is suffering some type of distress (whether understood to an outsider or not) it should be assumed that there is a logical reason that such distress developed.
If this is the first assumption made, then there is no need to search for “what is wrong” with the person; I will repeat until the end of time that the Hearing Voices Network put it perfectly by stating we must seek to understand “what happened” to the person. Until such a time that the person is able or willing to acknowledge/remember/process/understand the complicated interpersonal, familial, and societal dynamics that may have led to the distressing experiences in the present, it should always be assumed (once real medical and nutritional factors are ruled out) that there is meaning in said experience. Placing a priority on diagnosing and categorizing prevents meaning from being made.
“But why?” many will ask; if a diagnosis is “correct” and thereby will inform targeted “treatment” then is it not best practice to proceed in such a manner? Although I recognize that we live in a society that demands immediate results, immediate answers, and immediate eradication of pain and suffering, that does not mean that science must follow suit. The following is my reasoning behind why I unequivocally answer the previous question with an emphatic “No.”
Breaking down the experience
Within the domain of the dissociative and psychotic disorder categories, the following are the most common phenomena that people subjectively and internally experience:
- Extreme fear
- Overwhelming emotions
- Lack of emotions/numbness
- Lack of motivation or interest in anything
- Feeling unreal
- Feeling the world is unreal
- Hearing voices or other auditory stimuli others cannot hear
- Seeing/feeling/smelling stimuli that others cannot see/feel/smell
- Identity confusion
- Identity alteration with amnesia
- (Note: “Dissociation” is not included here for reasons outlined in my previous post; the definition is so confused and biased at this point that there is no need to use this word to describe anything)
Now, of course, there are many other experiences that could be added to this list when looking at any individual; and that is also kind of to the point: Individual experiences are very individual. Additionally, any individual may experience any combination of the above, to different severities, at different times, and interpret these experiences in different ways. If one interprets such experiences in a manner that goes against consensus belief, then others may claim it is a “delusion,” but a “delusion” is not the internal process or experience . . . it is just an explanation like anything else. In this sense, even the term “psychosis” ceases to have meaning.
Seeing as how a “delusion” can be seen as a logical explanation for an incomprehensible experience, or an attempt to bring structure to a chaotic internal or external world, then it makes no sense to me that “delusion” becomes a separate “symptom” that defines a specific “disease” that is distinct from all others. How is a person helped by being told that their internal experience is irrelevant, as is their past, because they are “delusional,” and therefore have an illness that must immediately be “treated”? I genuinely look forward to anybody responding with a constructive answer to this question.
Putting the idea of “delusion” aside (because an entire separate article could be written about that), how does diagnosis then fit in to the picture? DID is an interesting diagnosis because it is actually one of the few that has a high degree of validity and reliability when structured interviewing is utilized. Additionally, many individuals who receive this diagnosis may experience some level of relief that: 1) they are officially not “crazy” (i.e., “schizophrenic”); and 2) their trauma has been recognized. Further, trauma-informed treatments designed for DID experiences can be highly effective, validating, and rewarding . . . though, like any other treatment can also be incredibly harmful as well.
I might surmise, though no direct studies have been done to evaluate this, that the large portion of the harm done in this type of treatment occurs when an overzealous practitioner insists on his or her framework, pushes too hard for recognition and processing of trauma, focuses on the anomalous experiences at the expense of doing the difficult work, and the more general problems that come with relying on hospitalizations and psychotropic drugs for long periods of time. My point in stating this is to say that I come from a position wherein I believe that the dissociative disorder field has a lot to offer, but errs tremendously in its steadfast reliance on the biomedical categorical system.
On the other hand, the diagnosis piece is another story. The diagnosis of DID is based on one experience: identity alteration with amnesia. It is not surprising, then, that this category would have validity and some degree of reliability. If we took, instead, the experience of hearing voices and turned it into “Hearing Voices Disorder” it would also likely have a high degree of validity. This is because it is referring to one experience that the person has presented with: It is entirely tautological. I do not dispute that people experience identity alteration with amnesia, but this does not equate with having a disease or anything else above the experience itself.
Schizophrenia, however, is quite the opposite; this category is an amalgamation of broad and varied phenomena that may or may not have anything in common at all. As I stated in my previous blog, and certainly what has been articulated numerous times elsewhere, the problems inherent in the assumptions and associations made with this diagnosis are, quite frankly, a travesty.
Even so, there are plenty of individuals who also find reassurance and comfort in formulating their experiences from a disease model and find value in this label. We learn how to explain our experiences through group-mind or society’s authoritarian dictate of accepted knowledge; even those who are deemed “schizophrenic” learn to explain their experiences through the mind of the doctor. Just as the idea that doctors’ insistence that a “delusional” patient must accept consensus reality can be incredibly harmful and completely ineffective, so too is the insistence that all people with lived experience accept the same explanation for their experiences. I do not wish to invalidate their way of making sense of things. But, that does not negate that the travesty exists, nor does it make the diagnosis a valid one.
Any two individuals who experience distress that gets labeled as schizophrenia may have nothing at all in common. One may present with hearing voices, fear, rage, and overwhelming emotions, while the other has a lack of motivation, feels unreal, has a lack of emotions, and physically feels profound anxiety. The first person might have experienced significant sexual abuse, and the voices are the person’s way of making sense of this abuse while the resulting fear and extreme emotions are perfectly understandable responses to such a violation. The second individual may have experienced severe invalidation, a lack of mastery in life, and bullying. Both meet criteria for schizophrenia, and, for argument’s sake, let’s say there is no debate that this is an “accurate” diagnosis. How, then, does this diagnosis help in any way with “treatment”?
It just doesn’t.
Similarly, a person who experiences identity alteration with amnesia, thereby leading to a diagnosis of DID, may also experience hearing voices, fear, rage, and overwhelming emotions due to significant sexual abuse. Her experience is not entirely different from person #1’s experience in the preceding paragraph except for the added experience of identity alteration and amnesia. Do these two people then logically have entirely different diseases? Does “treatment” really logically flow from the diagnosis of either individual? Do these two people really need some drastically different kind of “treatment” at all?
More common within the DID realm is the person who experiences identity alteration with amnesia, fear, lack of emotion, lack of motivation, overwhelming emotion, profound anxiety, hearing voices, seeing/feeling/smelling things that others do not, feeling unreal, feeling the world is unreal, extreme fear, anxiety, hopelessness, sadness, and suicidality. This person now meets criteria for about 10 different diagnoses, DID being only one of them. When the individual does not agree with the clinician about how to explain these ever-changing symptoms, then more diagnoses may be added. Usually this will include several personality disorder diagnoses and, if the explanations sound bizarre to the clinician, then the person is said to also have schizophrenia. Again I ask; how does this help in any way with “treatment”?
It just doesn’t.
At the end of the day, any “diagnosis” or technical, medical term serves to distance everybody involved from the experience itself. It most often leads to internalization of stigma, otherness, inferiority, hopelessness, dependency, and shame. For many, it reinforces the very beliefs that contributed to the development of the distress in the first place: the person is broken and defective and deserved the mistreatment that he or she might have been victim to. It leads clinicians to fall into the trap of believing that any annoying or disturbing behaviors are indicative of disease or personality rather than an understandable response to internal or external events.
If one were to break down the seemingly incomprehensible presentation of distress into the individual experiences that may or may not include any or all of the above, then suddenly things begin to make sense. The clinician or family member might be able to relate, and the experiencer might also be able to relate to others and to his or her self in a more compassionate and humane way. There is no “othering” of the individual; rather, the experience is couched in a way that can be viewed as a very human, very understandable reaction to a very un-understandable world. Additionally, there is no disease or symptom to “cure” or “treat”; instead there is a journey to go on that includes relationship, meaning-making, healing deep wounds, coming to know one’s self, forgiveness, compassion, growth, and spirituality.
The British Psychological Society published guidelines in 2011 for the use of “psychological formulation” that, in theory, could replace diagnoses in mental health treatment (Division of Clinical Psychology, 2011). Basically, and I am really simplifying this here, they recommend that psychologists take an approach that focuses on personal meaning within familial, societal, and systemic contexts that honors collaboration and the role of trauma and chronic stress. Lucy Johnstone, MIA author and the lead author of these guidelines, has discussed this in more detail here. Using the previously listed phenomena, it might work something like this:
A 20-something-year-old woman presented to the emergency room after family members believed that she might hurt herself or someone else. She reported having large gaps in memory, was accused of being a liar, does not trust anybody, believes the staff of the hospital is going to attack her, hears voices, sees visions, and has a history of suicide attempts.
This is not an uncommon situation, but instead of saying she is “manipulative, attention-seeking, hallucinating, paranoid, delusional, and threatens suicide” the report is just a factual recount of her actual subjective experience. The formulation might go on to say that this individual denies any trauma or abuse, she has a lot of friends, is intelligent, aims to pursue X career, and does not believe that she has anything wrong with her. The psychologist could validate this and say “you’re right, you are clearly experiencing a great deal of confusion and distress and let’s work together to try and understand what might be going on.” The psychologist assumes that some external dynamic or event slowly over time led to the extreme experience in the present and does not insist that this dynamic or event be known right away. Each behavior, statement, or outburst can be seen as an attempt to express the very confusing internal world instead of being viewed as a disease or personality problem. Everything is a clue to finding meaning and reaching the goals of pursuing X career through a focus on strengths and understanding. The person in distress and the clinician can work together to understand what areas may need to be addressed first, how to more effectively cope with overwhelming emotions and pain, and building trust. Eventually, the meaning will come and any trauma or other painful experiences can slowly be processed. Specific techniques or activities can be planned around specific complaints of the experiencer: if she has identity alteration or hears voices . . . you can, together, get to know them and what they have to say. If she experiences feelings of being unreal or her surroundings being unreal, you can use grounding exercises. If she complains of heart palpitations and difficulty breathing, use relaxation exercises, if she has beliefs that the clinician does not understand or agree with, try to figure out how these beliefs are serving the individual, etc.
Nowhere in this formulation is there a need for diagnosis, “cure,” or an explanatory model beyond the context in which such phenomena developed. Some find comfort in diagnoses because they find comradery or normalization in knowing other people have experienced something similar. The Hearing Voices Network has shown how this same comfort can be found without diagnoses. A person who experiences mania, anxiety, depression (not in the DSM sense), identity alteration with amnesia, extreme fear and distrust of others, etc., can find that same comradery by seeking out others with that same experience; a diagnosis does NOT mean any commonality at all. Two people with the same diagnosis can have COMPLETELY different experiences and have NOTHING in common!
Alternatively, some find comfort in the diagnostic and medical explanations because they validate the lack of will or intention that the suffering individual may experience. This is a serious concern and must be addressed more sufficiently than has been thus far. Just because something is not medical, this does not insinuate the intention of one’s behavior. These experiences are very, very real. They have very real biological correlations. For instance, when one goes into a trance state (or dissociative state in some circles), every part of the brain shuts down relative to the verbal and animalistic/limbic portions of the brain. This is real, but; this is not a disease.
Lastly, using the formulation approach requires a bit more work for the professional engaging in such a practice. There is no automatic categorization, prediction, prescription, and rigid, manualized “treatment” plan, although there could be a place for all of these things based on the collaborative assessment of specific complaints. Instead, there is a need to practice an art of relating, collaborating, engaging, and dealing with really frightening, overwhelming, and uncomfortable emotions on BOTH parts. Diagnoses and medical/symptom-based approaches help the practitioner, and sometimes even the experiencer, maintain a comfortable distance from the traumatic, death-anxiety-provoking reality of life. But, we must move past this. We must do better. Again, back to the Hearing Voices movement: “Nothing about us without us.”
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Division of Clinical Psychology. (December, 2011). Good practice guidelines on the use of psychological formulation. Leicester, United Kingdom: British Psychological Society.