When we have DID, it is incredibly easy to get a misdiagnosis because the behaviors that we show based on our trauma history or inner experience get misinterpreted by mental health professionals. Common misdiagnoses are all kinds of personality disorders, bipolar disorder or schizophrenia. In some cases, we might show isolated behaviors that are considered signs of imitated DID but we have very good reasons for them that are logical and make sense. That is why a proper diagnosis needs proper testing by a person who is properly trained to facilitate these tests.
Reasons for behavior
It is impossible to observe a behavior and to know exactly what caused it. A myriad of reasons can lead to the same behavior. I can go to the restroom a lot because I drank too much coffee or because I cannot keep myself from laughing during a meeting so I do it there or because I am obsessed with my face in the mirror and can’t tolerate not seeing it for long, maybe I act out an eating disorder and maybe I am on my period. Who knows? Without asking me, all that people will notice is that I am leaving to go to the restroom a lot. The way they explain that and interpret it is all happening in their minds and will say more about them than it says about the reality of my restroom visits. ‘Behavior is multiply determined’ is what we were trained to repeat when we studied psychology. Many factors have an impact on the behavior that can be observed. It is impossible to observe a behavior and know all these factors simply by observation. It seems like some psychologists are quick to forget that.
Some personal experience [CN: mistreatment in therapy based on misunderstandings]
During a major crisis in my life I ended up in an open psych ward that specialized in personality disorders. They were the only ones who dealt with dissociative symptoms on a regular basis and there was no trauma ward. The situation was incredibly scary for my own system and we started to build little routines and anchors to help the traumatized parts to stay oriented. One of these anchors was having the same thing for dinner every night, something that reminded them of kind people and safety. The more dysregulated other patients got and the more scared the child parts got the harder we relied on our anchors. The team thought we had OCPD and treated us accordingly. When I expressed concern about dangerous impulses coming from other parts it was declared obsessive thinking and nothing to worry about. Whenever I tried to stay among people because I was scared of uncontrolled experiences happening while I was alone, it was interpreted as attention-seeking. Finally, my established DID diagnosis was re-interpreted as trying to be special. I left with a diagnosis of a combined personality disorder. I have never shown rigid routines before or after that clinic stay. It was a product of the unsafe circumstances. People who know me, laugh out loud when they hear that I was considered attention-seeking because I am highly introverted and barely ever seek help at all, let alone random attention. Approaching anyone for anything does not come easy for me.
What went wrong?
The clinic team was used to seeing personality disorders. That was, after all, their specialty. They lost sight of the reality that not everything out there is a personality disorder. They saw behavior that they have seen before and they thought that they knew what that was about. They moved from an observation into their own interpretation, explanation and evaluation/diagnosis without ever talking to me about my own reasons for doing something. They never even asked if this was normal for me or a byproduct of my crisis situation. They never tested for any PD because they were aware that I wouldn’t fit one of them well enough. But I was so very obviously disturbed in the way I behaved and it looked familiar to them. The situation would have needed a whole lot more communication on eye level to figure out what was even happening. The interventions ended up not fitting my problems at all because they didn’t bother trying to find out the real reasons for my behavior. Finally, they put the responsibility for the failed treatment on me instead of reconsidering their own process.
Things people with DID do
People with DID do a whole lot of things that can look like something. We might
- speak loudly with the voices in our head
- interact with a scene that is an inside reality on the outside as if we are hallucinating
- become extremely needy and emotionally unstable all of a sudden due to a switch
- get angry and reject people all of a sudden due to a switch
- confuse inside and outside reality or past and present and act strangely or have stress responses to seemingly trivial things
- show no emotion at all and not be in contact with any feelings, have a blank face
- show no connection or empathy with others because we are too dissociated to notice them properly
- have flashbacks or switches that draw attention to us
- follow strict rules that are based on rules during TraumaTime and that were enforced with terrible punishment back then
- have parts who feel utterly incapable of coping with life and who are very dependent on others
- get overwhelmed with shame and withdraw into our own world
- seem to have no sense of shame whatsoever and happily share all kinds of unexpected thing because we are so dissociated from our feelings and have no boundaries
- have parts who act dramatically and show intense emotion that does not fit the situation
- have very controlling parts who try to dominate others because that has always been how they created a sense of safety during TraumaTime
- intellectualize everything because we are numb to trauma or emotions and that is the only way to function that is available to our ANPs
- strictly follow rules and get overwhelmed with fear when rules were broken because that would have caused severe punishment during TraumaTime, show other inflexible thinking concerning rules
- talk about trauma in such a dissociated way that it does not seem like we can possibly have experienced it ourselves, it does not feel real to the therapist because it doesn’t feel real to ourselves due to derealization
- have no facial expression and no visible stress response when talking about trauma or getting triggered. The reaction happens inside where it stays invisible.
- show weird fluctuations in our sense of self and our identity as if we are trying out being a bunch of different things depending on the situation
- …
It is not rare to show all of these behaviors and similar ones at different points in time.
To make sense of these behaviors it is necessary to talk to us about the experience. Are we narcissistic and have no empathy for others at all or are we so depersonalized that we don’t feel anything, for ourselves or others, and that cuts us off from empathy too? I just listed a whole bunch of behaviors that would be typical for the whole range of personality disorders. But when they are taken together, they are not specific for any one of them. When we get a behavior pattern like that, it is the easy way out to just call it a combined PD and leave it at that. But what if… What if the PD framework simply doesn’t fit because the base problem is dissociation. These kinds of all-and-nothing patients might need a fresh view that returns to initial steps.
‘Who does what and why?’
This is an approach by Nijenhuis that is central to DID therapy. Who is behaving? It is not all the same part of the personality. What exactly are they doing? And what do they think they are doing? What we see can sometimes greatly differ from what they experience. And why do they do that? The Why is of utmost importance to make sense of the behavior at all. There are good reasons. These reasons are usually a lot more complex than having a ‘disordered personality’. They are usually rooted in defensive strategies and realities from TraumaTime. It is possible to identify the elements of integration that are missing. Behavior cannot be evaluated until we know the Why of it. Misunderstandings happen when professionals are so sure of their interpretation of our behavior that they fail to ask about the Why. Suddenly we are supposed to have OCPD when really we were trying to help inside kids to stay oriented during a confusing day at a confusing place. One question would have been enough to figure out that this was an iatrogenic behavior that wasn’t even a real symptom. Patients are always told to check their thinking and not believe everything right away. They are told to test their theories about people and consider that their interpretation might not be a reflection of reality. Patients are supposed to separate the steps of observation, interpretation and evaluation and expect mistakes within these steps. Therapists should remember that as well. There is no reason why they should be any better than normal people and being specialized in something can lead to interpretations and evaluations that are full of misinterpretations. Ask. It is not that hard. And ask with an open mind. If every answer gets interpreted to fit the evaluation that was already decided on, there is no need to ask at all.