Podcast: Reducing the Impact of Dissociative Identity Disorder
Jenn talks to Dr. Milissa Kaufman about dissociative identity disorder and its misconceptions. They also talk about how it can be misinterpreted as other mental health conditions and discuss trauma’s impact on the condition, as well as ways to get loved ones help for the disorder.
Milissa Kaufman, MD, PhD, is the medical director at McLean Hospital’s Hill Center, a clinical program specializing in the treatment of PTSD. She is also the director of McLean’s Dissociative Disorders and Trauma Research Program, which focuses on women with experiences of childhood trauma. Dr. Kaufman’s group aims to identify and understand the brain mechanisms, cognitions, and genes contributing to PTSD and DID and how they relate to both dysfunction and resilience in these disorders.
Jenn: Welcome to Mindful Things.
The Mindful Things podcast is brought to you by the Deconstructing Stigma team at McLean Hospital. You can help us change attitudes about mental health by visiting deconstructingstigma.org. Now on to the show.
Hi folks. Good morning, good afternoon, good evening wherever you are joining us from in the world, whatever time you’re joining us. Thank you for joining for “Reducing the Impact of Dissociative Identity Disorder.”
I’d like to introduce myself, I’m Jenn Kearney, and I’m a digital communications manager for McLean Hospital. I’m joined today by Dr. Milissa Kaufman as my cohost. And dissociative identity disorder, which we’ll be referring to time and again in the session as DID is pretty often misunderstood by the public and even by experts.
A lot of symptoms that have been presented publicly in the media and in Hollywood, not always what it seems, symptoms can actually really be easily missed. So without training experts might treat a company conditions and other symptoms, but not actually DID itself.
So I’m really excited to have Milissa with me today to talk about how we can support everyone who is battling DID, whether it’s silent or not, ways that we can better understand the condition, its symptoms, its impact, and how as all of us, whether we know somebody with DID, we have it ourselves, how we can all work toward de-stigmatizing the condition together.
So if you are unfamiliar with her, Dr. Kaufman is the medical director at McLean Hospital’s Hill Center for Women, which is a clinical program specializing in the treatment of PTSD. She’s also the director of McLean’s Dissociative Disorders and Trauma Research Program, which focuses on women with experiences of childhood trauma.
Dr. Kaufman’s group at McLean aims to identify and understand brain mechanisms, cognitions, and genes contributing to both PTSD and DID, and how they relate to both dysfunction and resilience in these disorders. You have quite the bio, Dr. Kaufman. So, first of all, I just want to say, thank you so much for joining me today.
I know this conversation has been a long time in the works and I’m super excited because there’s not a lot of info about DID out there, so I’m excited that we get to be some of those people who are really being loud about it. So what is dissociative identity disorder and how would you as an expert define it?
Milissa: That’s a really great place to start. I do want to thank you, Jenn, and thanks to folks who are attending today. It’s really great to have this opportunity to speak about a disorder that really has taken a long, a big part of my career, so I’m very excited to be here. Thank you.
So I guess I’d like to explain it to folks in two different ways, one kind of taking a developmental perspective and two, taking a diagnostic perspective. So let’s go ahead and start thinking about it developmentally.
DID, which used to be referred to as multiple personality disorder develops when a person is unable to form a fully consolidated and cohesive sense of self, because they haven’t been able to integrate all aspects of themselves and their emotions.
So instead of having many personalities, which really is a misnomer, someone with DID has a single fragmented personality structure.
It’s important to know that DID is a chronic childhood onset type of post-traumatic adaptation, essentially some children when faced with emotional, physical or sexual abuse have this capacity to dissociate, which helps them to get through it.
Dissociation is a coping mechanism that helps the child survive a situation in which they may not feel like they’re going to be able to survive. To give you an example, we can imagine a little girl who’s being sexually abused by a parent over a long period of time.
To survive she displaces her overwhelming thoughts and feelings onto other aspects of herself, other aspects of herself that she personifies into, not me.
Now, it’s too overwhelming to feel such fear. That’s not me, that’s someone else. It’s too dangerous to feel such anger. That’s not me, that’s someone else. It’s too real to know what is happening to my body. That’s not me, that is someone else.
So some children cope in this way by dissociating. They disconnect from their own thoughts, feelings and memories or body sensations and from the environment. And it really works. Essentially, they compartmentalize off traumatic experiences, which allows them to keep functioning.
Now, the problem comes about when the child grows up and is living their adult life in this compartmentalized and unintegrated way. Now to help explain this further, I like to go at it from a different angle. I think this is helpful.
Virtually everyone with DID has post-traumatic stress disorder or PTSD due to chronic exposure to childhood trauma. So to explain DID diagnostically, I’ll contextualize it with PTSD as a starting point.
Most of us know that PTSD is really a well-defined syndrome. In addition to traumatic stress exposure, the diagnostic criteria for PTSD include symptoms from each of four different categories.
There are intrusions of traumatic memory, there’s avoidance of salient reminders, there are negative alterations in cognitions and in mood, and there alterations in arousal and reactivity. Importantly, not only do all folks with DID have PTSD, but they also have a very specific kind called the dissociative subtype of PTSD.
Diagnostically, the dissociative subtype requires all the same criteria for classic PTSD, but in addition, it requires the presence of two additional symptoms of dissociation. So there’s depersonalization, which involves a sense of detachment from one’s thoughts and emotions, one’s sense of self and one’s body.
And there’s a derealization which involves a sense of detachment from one’s surroundings or from people or objects in the environment. So diagnostically, what is DID?
Against this backdrop of a universally co-occurring chronic PTSD syndrome with profound symptoms of depersonalization and derealization, a formal diagnosis of DID is made when two specific symptom requirements are met, there’s this disruption of identity characterized by two or more distinct identity states and there are recurring gaps in recall or amnesia for everyday events or important personal information and traumatic events.
So knowing that these two diagnostic criteria, knowing what they are for DID and understanding that these two symptoms occur against a backdrop of the dissociative subtype of PTSD, they can give us a real sense of common ground as we continue, I think to talk more about DID.
Jenn: So why is DID so under-recognized/misdiagnosed in the mental health community?
Milissa: Yeah, it really is. And it’s a great question. I guess there are several specific reasons I can think to touch upon. First of all, DID, as we know, develops in the context of chronic childhood trauma and this trauma most often is in the form of severe child abuse at the hands of caregivers.
So I think part of the reason DID has gone under recognized, goes hand-in-hand historically with societies difficulty in accepting the reality of child abuse. It’s about denial. Society has found it hard to really think about child abuse, let alone to believe that it really happens.
I think in a good way, my sense is that there’s been an important change over the past decade or so in our culture’s willingness to acknowledge and to openly discuss the reality of childhood abuse. And I believe this is carrying over into more of an openness in accepting DID as a valid thing as well.
Another reason that DID has gone unrecognized is due to this inaccurate belief among many clinicians that DID is rare. Many clinicians just aren’t expecting to encounter it in their own practice.
But DID isn’t actually particularly rare, in fact, epidemiologically, there’s been studies that have shown that the prevalence rate of DID is about 1% in the general population. And by way of comparison, that’s about the same prevalence of schizophrenia, which all clinicians know about and are trained to diagnose and to treat.
The clinical samples of prevalence of DID is even higher, studies of psychiatric outpatients show an average prevalence rate of about 2.5%. And in psychiatric inpatients, it’s even higher about 5%. So it’s not a rare, it’s not a rare disorder.
And the last reason why DID has often been underdiagnosed or misdiagnosed is that it’s historically been inaccurately and really sensationally depicted in the media. So if you think about it yourself, and I think we’ve talked about this before, in books that you’ve read and movies that you’ve seen, in news reports, people with DID always are portrayed as having these dramatic and really floored shifts in identity, right.
It’s almost as if, you know, they have completely separate people living inside them and that makes for great cinema. Just like the public’s perception, clinicians, at least those who aren’t trained to recognize signs of trauma and dissociation may believe that patients with DID are going to present in this way. And that’s just, it’s not accurate. Most folks with DID have really subtle presentations.
And putting it in another way, the fundamental problem people with DID have is this, they do not feel integrated, instead they feel fragmented as if many of the thoughts, the feelings, their memories, and even their behaviors within their experiences are separate from them, as if somehow these aspects belong to other people, other people who seem to be residing within their own mind, much to their confusion.
They themselves often wonder how can this be possible? What’s wrong with me? But the key word here is feel. Yes, people with DID feel this way internally, but they also almost universally struggle with a deep sense of shame about their internal experience.
They know that something is wrong. They know that most people don’t feel this way. And so they strive to keep their internal struggles and confusion well hidden from others. So unless a clinician knows what to ask, they can easily miss it.
Clinicians need to ask their patients about experiences of childhood trauma, about symptoms of PTSD and about specific symptoms of dissociation.
Jenn: I know that both you and I have touched a little bit upon the media’s sensationalizing of it, really emphasizing that whole multiple personality part of dissociative identity disorder.
But if folks with DID aren’t exhibiting that, air quote, personality switching, like how it’s been blatantly portrayed in the things that come to mind for me are, like “Me, Myself & Irene” or “United States of Tara,” so if that isn’t the biggest symptom or the most obvious, what are the most common symptoms of DID?
Milissa: Yeah, this is a great question. And these movies are cinematically interesting to watch, but as we started to talk about today, folks with DID have symptoms of PTSD. They have severe symptoms of depersonalization and derealization, and they have difficulty remembering some aspects of their lives.
It’s really hard for them to put together a linear narrative about themselves in their own internal or their own history. Furthermore, they often have very vivid, this very vivid sense that some of their thoughts, feelings, and memories don’t belong to them. And at times they lack a sense of agency about their own actions.
So these are the most common symptoms of DID. But there are other frequently associated symptoms as well. For example, there are trance states, individuals with DID spontaneously go into auto hypnotic trance states and that’s part of really what’s driving dissociative symptoms.
Another way to think about this is that they frequently spontaneously have a profound narrowing of their attentional field, they block things out. This profound narrowing of attention contributes to the lack of agency they experience with regard to their own thoughts, feelings, and actions.
I’d say folks with DID also frequently experience auditory hallucinations, which is often misunderstood. These hallucinations typically are qualitatively different than those experienced by individuals with psychosis, for example, in DID, auditory hallucinations are often located internally.
They have a specific age, gender, and mood quality, and they’re experienced in a highly related manner. And these two likely represent an auto hypnotic phenomenon that’s different than the type of auditory hallucinations that folks with psychotic disorders experience.
Lastly, I guess I’d say that other frequent, other frequent symptoms associated with DID include depressed mood, suicidal ideation, and self-harm behaviors, disordered eating and substance use. There’s also somatoform symptoms, which are quite frequent and these are physical symptoms arising from a psychological rather than a medical origin.
Jenn: So how exactly does DID differ from other dissociative disorders?
Milissa: Yeah, it does. Well, in addition to DID, there are two other types of dissociative disorders. Number one, there’s dissociative amnesia, and number two, there’s depersonalization derealization disorder.
The short answer to your question, I guess, is that folks with DID do experience all of the symptoms that characterize these other two dissociative disorders, but it doesn’t work the other way around.
Folks with, or folks who are diagnosed with dissociative amnesia or depersonalization derealization disorder, don’t have all of the symptoms of DID. So let me just unpack that short answer a little bit. Dissociative amnesia as a standalone diagnosis involves a loss of memory about autobiographical information.
People can’t remember important personal information that most often is associated with stressful or traumatic events. The prevalence of dissociative amnesia, to my knowledge, hasn’t been well-established, but it is the most common dissociative disorder.
And to receive the diagnosis, medical illness or head injury has to be ruled out as a cause for the memory loss. Dissociative amnesia can present in two different forms. Most often it presents as a circumscribed or selective memory loss for a specific event only, but occasionally it presents as generalized, involving the inability to remember one’s entire life.
Dissociative amnesia is one core symptom of DID, but as a standalone diagnosis, it differs from DID in that it doesn’t involve depersonalization, derealization and identity alteration. And the other type of dissociative disorder, depersonalization derealization disorder, it involves persistent or recurrent symptoms of depersonalization, derealization or both together.
Having transient symptoms of these two kinds of experiences is very common. The prevalence rate, however, for the full disorder is about 2%. People who are experiencing disorders describe their experiences in many different ways. And it’s very hard to put into words.
So I’m just going to go over some ways that people have spoken to me about their experiences to give you a sense of it. In terms of depersonalization, people may feel, may say that they feel robotic or unreal, or that they know that they have emotions, but they’re unable to feel them.
They may also describe feeling detached from their body as if they live up inside their head. In describing derealization, people might say that they feel alienated from their surroundings or that they see objects as bigger or smaller than they really are. Or they may also describe feeling like the world around them is far away, unreal or like a movie to them.
About half of people with depersonalization derealization disorder do have a history of trauma, but the other half don’t, and as we’ve discussed, these two symptoms are core symptoms in and of themselves with DID, but the disorder itself differs from DID in that it doesn’t involve symptoms of significant amnesia or identity alteration.
Also, lastly, the type of traumatic experiences associated with DID, typically are much more severe and longstanding.
Jenn: So with the understanding that DID can go on unaddressed, whether it’s a clinician missing the signs, someone not seeking help, what is the potential day-to-day impact of untreated DID?
Milissa: Yeah, it’s important to note that DID is a treatable condition, but without treatment people really are unlikely to recover spontaneously. The day-to-day impact really can vary. I’ve known folks with DID who do very well in their day-to-day lives. And I’ve also known some who have great difficulty functioning.
Other people may do very well at times, but then have difficulty if something in their lives becomes very stressful. For example, if they suffer a significant loss of some kind or have to deal with a lot of change.
Day-to-day functioning may depend certainly on the amount of support that someone with DID has in their relationships and whether or not they feel stable financially and in their education or their work pursuits.
I’d say that day-to-day functioning also is greatly effected by the extent of other psychiatric issues that someone with DID maybe dealing with. I think, having said all that, everyone with DID struggles, they struggle with varying levels of memory impairment and a deep sense of this internal fragmentation.
They struggle as well with intrusions into their lives of traumatic memory and other really painful PTSD symptoms. They also universally struggle with self-esteem issues and in a deep and really sadly misguided sense of shame.
And sometimes self-loathing, and they very often have this sense of needing to hide themselves from others, hiding their internal struggles from others. They feel fearful a lot, they feel isolated despite the fact that many people with DID are quite successful in many areas of their lives.
And I guess I’d say that that’s one of the reasons I really like to do these educational events that are open to the public because one of my biggest hopes is that in some way, all of us getting together like this will help someone with DID feel less alone.
Jenn: I think that’s a really nice sentiment too. It’s something to be able to talk so freely about a condition in a way that so many people can understand, is one of the biggest components of de-stigmatizing things that are so complex, like DID.
Milissa: Exactly, thank you for doing this webinar and for all the webinars that you do. It’s certainly not a phenomenon that’s exclusive or inclusive just to DID, lots of folks with psychiatric issues are dealing with that. So thank you for all that you do.
Jenn: Oh, stop, you’re too kind. I know you and I, so you and I have had this conversation before about how a lot of times the symptoms of DID get treated by a provider, but not necessarily the actual condition itself.
So how can providers be more cognizant of symptoms that are associated with DID? Is it a type of training and if so, what types of trainings are available for healthcare providers to become more aware of DID?
Milissa: Yeah, terrific questions. Providers need to know, to begin with that there’s an extensive clinical and research literature out there on DID, the information really is out there and it’s easy to find. In addition, there are well-validated self-report measures that are easy to get hold of that can be used to evaluate for symptoms of dissociation. And that’s a great way to just start an assessment.
For example, one measure that’s very commonly used and very easy to score is called the Dissociative Experiences Scale. One that I use a lot is the Cambridge Depersonalization Scale. There also are well validated measures that assess specifically for DID, that includes an extensive self-report measure developed by a psychologist, Paul Dell, called the Multidimensional Inventory for Dissociation.
And there’s, really what we in the field think of as the gold standard diagnostic inventory developed by a woman, a psychiatrist named Marlene Steinberg called the Structured Clinical Interview for Dissociative Disorders. And we use that a lot.
For any provider who wants to learn more about DID assessment and treatment, really the best place to start is with the International Society for the Study of Trauma and Dissociation or ISSTD. I’m a member, I’ve been a member for years, and it’s a great place.
The society has published expert consensus guidelines on the treatment of DID and also publishes the journal, Trauma and Dissociation, has a great number of articles that would be of interest to clinicians.
ISSTD also offers an array of terrific courses on DID both online and in person that are taught by clinical and research leaders in the field. So I’d really encourage practitioners who are interested to go ahead and visit the ISSTD website.
Jenn: With something that is so complex as DID both from the patient and the provider side, it can be really overwhelming to examine how to treat the condition. And I know that you are so heavily immersed in it. I would love for you to give folks an overview of how practitioners approach their work when treating DID.
Milissa: Sure. Absolutely. As I mentioned, the ISSTD has published treatment guidelines for DID and their guideline maps out a treatment model that occurs in phases. It’s called the phase oriented model.
From the practitioner side, phase one of treatment typically involves a lengthy period of work establishing the treatment alliance while fostering safety, symptom stabilization and the development of a shared language.
A very important skill that practitioners teach folks with DID early on is how to ground themselves when dissociative symptoms such as flashbacks, when they arise. Grounding skills can help remind people that they’re safe. They may not have been safe back when the trauma occurred, but they are safe in the present moment.
So it’s a great thing for folks to learn how to do early on. It’s also important in this first phase of treatment to address issues such as depression and anxiety, and to get PTSD symptoms under control. There’s no medications specifically for DID, but there are medications to treat some of these associated symptoms, so it can be very helpful, adjunctively.
Moving on to phase two of treatment, this involves discussion and working through the details about traumatic memories, grieving certain aspects associated with these memories and all the while continuing to work on maintaining stability in daily life while this trauma processing is going on that is so important to be able to maintain stability during this phase.
Lastly, phase three of treatment involves helping the patient learn how to live a new, more fully integrated life, managing stressors now without as much reliance upon the dissociative coping defense. People with DID begin to integrate their dissociative self state.
They come to understand about how each self state help them to cope with their experiences, what their self states protected them from. And gradually people with DID learn to trust themselves to believe that they themselves can tolerate their own thoughts, feelings, and memories, body image, and behaviors.
So, this of course is a highly abbreviated description of DID treatment, which typically is quite lengthy, but it’s valuable to take it into account in this phase-like model. What’s also valuable to take into account is that individuals with DID may not be ready to proceed to trauma focused work for an extended period of time.
In my opinion, it’s really important not to jump immediately into process traumatic memories. It’s vital to spend the time needed to establish a strong alliance, to educate, to develop a shared language and to stabilize dissociative symptoms and other issues such as anxiety, depression, and self-harm behaviors.
Jenn: One question that I imagine a lot of folks tuning in have, either somebody that they, someone that they care about deeply, either has recently been diagnosed with DID or has been working through a diagnosis of DID for some time.
How can these folks support the patients and their journey for treatment and more importantly, or equally as importantly, should they also be joining for therapy sessions?
Milissa: Okay. Yeah. It’s a lovely question to ask how folks can support their loved ones with DID. The first thing that comes to mind is probably going to sound simplistic maybe, but it’s definitely not. And I’d say really that it’s to be a good listener.
And that means being open to hearing about what they’re going through in their journey, but also listening without jumping in to give an opinion or to offer advice as difficult as this, that may be sometimes.
The consistency in just being there as a supportive presence is really what matters. And really nothing is more important than that. I would suggest never pushing someone with DID to talk as important as it is for folks with DID to know that they have support, it’s equally important for them to know that they can share at their own pace and then have their own boundaries.
DID develops in an atmosphere where boundaries were crossed in very harmful ways. So it’s a really good thing to consistently and respectfully pay attention to such matters in a relationship. And this applies well to the question about joining psychotherapy sessions.
I don’t recommend that family or friends join therapy sessions routinely. It’s a private space, and it’s very important for someone with DID to have such a place just for them.
Now they may be anxious about going to therapy sessions, this is really common, but an important part of the treatment is for the clinician and the patient to talk about this experience together, work through it together. This can be a really powerful experience.
I do think that if a patient is interested in having someone join them for a session to be educated about DID, and to get guidance on how it’d be helpful, that can be very important as well. Partners and friends should do all they can to educate themselves about DID and a clinician can suggest reading material.
There is so much misinformation on the internet about DID, it’s astounding. So good resources are key. I’d be happy to provide a couple of resources as well that can be found on the internet.
Lastly, I’d say that, that certainly if there are safety issues that someone with DID is dealing with, it’s important for the clinician to be able to speak to a family member or friend, that’s, this sort of arrangement that typically is made at the start of treatment, the clinician will ask the client to sign a release, allowing for contact if an emergency does come up.
Jenn: So out of curiosity, I know when you said there’s a ton of misinformation out there, I admittedly have, I’m not fully familiar with DID, but I DID my due diligence and did my homework before this, came across that acute stress disorder, PTSD, and DID all have dissociative symptoms.
So how can a provider actually differentiate between these conditions if they all have really similar symptoms?
Milissa: Yep, so this is a question I get a lot, so thank you for asking it. It’s important to sort out and it’s true that all three of these conditions as you’ve read about, acute stress disorder, PTSD and DID, they’re all associated with dissociative symptoms and all of them involve a history of traumatic stress.
The difference really lies in the extent of the dissociation and the duration of symptoms. We can start off with comparing acute stress disorder, which I’ll refer to as ASD with PTSD. I’m not going to get too into the weeds about this.
While the number of symptoms and to some extent, the types of symptoms required to make a formal diagnosis of ASD do differ in some ways from PTSD, for the most part, they’re quite similar disorders, but a diagnosis of ASD is made when symptoms occur within the first month of a traumatic event.
While the diagnosis of PTSD is made when symptoms occur for longer than a month. And about 80% of folks who have acute stress disorder actually do go on to develop PTSD. Now getting back to dissociative symptoms, there are several that appear in the diagnostic criteria, both for ASD and for PTSD.
They are flashbacks, memory loss for some part of the traumatic event and there’s a depersonalization and derealization. Folks with ASD or PTSD may experience these symptoms, but not everybody does. They’re not required to make either diagnosis.
On the other hand, people with DID, of course always have memory loss. They always have symptoms of severe depersonalization and derealization, it’s qualitatively different than what is, tends to be experienced in the other two disorders. And in my experience, folks with DID always have a history of severe flashbacks.
So what of course really separates DID from these two disorders is a symptom of identity alteration. So that’s how I kind of differentiate them by the duration of time since the traumatic event and also the type and quality of dissociative symptoms.
Now, an important caveat is that some folks with DID may not be ready to talk about their symptoms of dissociation early on, or they may struggle with how to put their dissociative experiences into words.
So to practitioners who have ASD or PTSD patients in their practice, who have histories of childhood trauma, I’d suggest continuing to occasionally ask about dissociation as treatment proceeds. It’s not a one and done kind of thing, ask about it directly or just listen for it. Dissociation has a way of hiding out.
Jenn: I know that we’ve addressed that trauma often PTSD gets diagnosed alongside DID, but what other conditions might also be diagnosed and are there some excluding PTSD that are more common than others?
Milissa: Yeah, yeah. Well not everyone with DID has other psychiatric issues, except as I’ve mentioned with this, almost universally co-occurring diagnosis of the dissociative subtype of PTSD. There are several other conditions that are fairly common.
This can be depressive disorders such as major depression, or what we think of as dysthymia, there are anxiety disorders that can co-occur, folks can have disordered eating such as a binge eating disorder, bulimia or anorexia, alcohol and drug disorders can be prevalent.
Borderline personality disorder can occur in some folks with DID. This is kind of a controversial kind of topic.
In my experience, the diagnosis of personality disorder, while it can co-occur, often seems to fade way as folks with DID are treated and they share a commonality and in some aspects they are self-harm behaviors involved in both, folks with BPD can have symptoms of depersonalization, derealization.
But again, by and large, I find that folks with DID are often misdiagnosed with BPD. The last disorder that I’ll bring up is somatic disorders, which I think I already brought up, and this can be either a preoccupation with physical symptoms that you see in DID, or conversely, a significant lack of self care and avoidance of medical issues.
Folks with DID tend to be quite phobic about their body and having others look at or see or touch their body. So you can see that quite frequently.
Jenn: I know you had mentioned that BPD is one of the conditions that can be misdiagnosed. Are there other conditions that, or disorders that DID can be confused with or misdiagnosed as?
Milissa: Yeah, so there’s BPD, like I said, other disorders that DID is commonly, commonly confused with, schizophrenia, for example, we talked about auditory hallucinations. So if a provider is taking the assessment and the patient is talking about auditory hallucinations, they may think that this is part of a psychotic spectrum illness.
As I mentioned, the quality of auditory hallucinations, it tends to be different in folks with psychotic disorders and DID, and also in terms of psychotic disorders.
If a patient is telling a practitioner that they feel like they have people inside them, I think that practitioners that are not well versed in dissociative disorders and DID in particular, may actually think that this is a delusion.
The difference, folks with psychotic disorders have delusions and they don’t typically go away, anti-psychotics can be helpful, but that is a core symptom. Folks with DID have what some have called pseudo delusions. It is this sense of having people that live inside their mind, but it responds to treatment.
So it’s not really a delusion, it’s a coping mechanism that started in childhood when children have this way of magical thinking that has stayed with folks with DID, it’s also part of an auto hypnotic type of situation, which is not psychosis.
So again, BPD, psychotic disorders, I guess that sometimes folks can be misdiagnosed with a bipolar disorder. If someone with DID is having really intense mood symptoms or rapid flashbacks, I suppose that one…if they were just looking at it in that circumscribed period of time, might see someone go from having kind of a neutral way about them to being very agitated, one might misdiagnose that as a bipolar spectrum. But that is not the case.
Jenn: We had a clinician write in asking, well, stating and then asking, it’s not uncommon for me to diagnose other specified dissociative disorder for patients who have dissociation impacting function.
The example they provided was, person walks into a grocery store, doesn’t remember much until they get home and are delighted that somehow ice cream made it into their cart. Should the clinician be looking harder for DID?
Milissa: With just that example? I mean, with just that example, I think they have many different reasons for why that would happen. Other specified dissociative disorder is an important diagnostic category, I’m glad that it was brought up.
Typically it involves dissociative disorders that don’t quite meet full criteria, in particular, in this case, full criteria for DID. So there may be not much amnesia present, but the patient has the sense of the internal dividedness or conversely there may be profound amnesia, particularly for childhood offense.
And while there’s fragmentation, it’s not to the extent that one would fully see with DID. And I see this a lot, folks that sort of go in and out of really understanding that their sense of self, they know it’s them, but they don’t know it’s them, they know it’s them, but they don’t know it’s them.
That is not sort of a full-fledged, I guess DID, but you treat it the same way. And quite frankly, as folks with DID begin to enter treatment, begin to get better, that’s exactly what they look like. So it’s an important question. I think the ice cream thing has maybe happened to me at times, but it’s probably not because of DID.
Jenn: I think it’s also happened to me too, but I just, in my subconscious, I just really wanted ice cream.
Milissa: Yeah, exactly. It’s a great way to phrase the question, I’m glad it was asked.
Jenn: Out of curiosity, can a person have false memories with dissociative amnesia? I guess the example of a false memory would be like thinking that they were somewhere that they’ve never gone to, or were part of an experience that they were never truly a part of.
Milissa: I mean, that’s, I want to say it’s a loaded question just because this is a giant controversy that’s been around for years and years and years within psychiatry. I mean, to circumvent the question a little bit and just say, I’m not a detective, I don’t know what happened to my patients when they were children.
I’m relying on their self-report. I go with what patients tell me, I try very hard, never to suggest anything. I’m familiar with the literature that certainly has shown, prospectively and also, children who have DID have been followed and investigated by DCF and the kids with DID that are reporting abusive kinds of experiences, they pan out.
We know that abuse happens to children. Can people misremember things? Absolutely. And it’s really important to think about, children experience things in a different way than adults do.
So it’s possible that a child may be traumatized by something that happens, for example, a child may be put in a closet, which is horrible, to think about a child put in a closet as a form of punishment.
And they may remember this as something absolutely terrifying and horrifying and they don’t understand it. And so the way they might describe it as an adult, it might sound like something different happened than the experience of an adult that gets locked in a closet or something like that.
So, are memories fallible? Yes. Does childhood abuse happen? Yes. Have I had patients who have been in treatment that their memories weren’t very well formed and something will trigger them and flashbacks come back, I know a lot of folks that have PTSD that comes back in that way, so there can be delayed memories of trauma as well?
So I don’t know that I’ve answered the question very well. It’s a controversial question, a controversial theme in psychiatry, but I think it’s important to continue to have the conversation.
Jenn: Someone wrote in asking how can we help a person that’s a young adult get help, especially if the person has had a traumatic experience as a teen in a traditional clinical environment?
Milissa: So how to help the teen, I mean, lots of teens don’t want treatment and I don’t know if that’s what the question is getting at.
Jenn: Yeah, so they’re more curious about how they can help somebody get help, especially if this person is already hesitant to do so.
Milissa: How to help them? It kind of depends. It depends on how bad the symptoms are. If a person’s day-to-day functioning is really being impaired the kid can’t function in school, staying in a room all the time, having flashbacks, in that case, a parent needs to take a stand, quite frankly, and get their kid into treatment even if the kid doesn’t really want to be in treatment.
And try to explain as best they can, that this is going to be helpful for them, try to de-stigmatize it cause a lot of kids just feel embarrassed, they don’t want to have something like that. And sometimes a parent just has to take a stand.
Conversely, if it’s not so much interfering with day to day life, you have to give people space and room. You can be that presence. You can say, I’m here, I’m willing to listen whenever you want to listen, but give them space. It really kind of depends on where they are on the spectrum of what’s going on with their symptoms.
Jenn: I know oftentimes a lot of kids and teens are a bit more hesitant to talk about their mental health just because there is still so much stigma around teen and adolescent mental health.
However, there is a growing population on social media, particularly mental health TikTok where the idea of dissociation is actually trending in college student populations. So a lot of college students are actually using the idea of dissociation and the phrase more widely.
Folks are curious, what are some basic ways to actually suss out true dissociation versus what clinical dissociation is and what other experiences may actually be occurring?
Milissa: Yes, I’ve heard of this phenomenon, and actually had a colleague of mine that just was interviewed for a, just came out in The New Yorker, a piece in the The New Yorker about this kind of phenomenon.
Sussing out what is dissociation and what is not. You can’t suss it out on TikTok, you can’t suss it out on YouTube. And I think it’s fine for people to express themselves in whatever they, way they wish. Dissociation, lots of people dissociate and lots of people have the sense that in different areas of life, I feel very differently.
I, myself, when I’m a parent can sometimes act very differently than when I’m at work or when I’m out with my friends. And for some people that can feel pretty intense and especially, adolescents and college aged kids still haven’t fully formed sort of a fully integrated sense of themselves.
This is something that happens, this coalescence, during the adolescence. So the question is how do you suss it out? You don’t, you take people where they’re at. I’ve heard of actually, I read an article recently about this, where someone on YouTube was accused of making things up and there was a big YouTube war about this.
I don’t think that helps anybody. I’m all for freedom of expression. That’s fine. People need to be met where they’re at, but DID, as we’ve talked about for this past hour is diagnosed in a very specific way.
There are antecedents of severe childhood abuse and people may feel like they have sort of confluence in their identity, but that’s not dissociative identity disorder.
Jenn: Can you talk a little bit about functional multiplicity and final fusion, more specifically what they actually mean and how they relate to DID.
Milissa: Sure. Functional multiplicity arises when, when someone with DID is not fully integrated, it’s a step sort of prior to that, not all folks either reach the stage of integration or want to, and that’s okay. It’s a personal choice.
Functional multiplicity is when there is much less conflict internally inside amongst different aspects of self, different aspects of self, there’s a sense of cooperation, there’s a sense of really listening internally to sort of different self state point of views.
And so it’s getting along with yourself and getting along with your different senses of self. And that can be fine. It’s much, much better to be in this situation where there’s less conflict, there’s less, there’s no more self-harming, there’s more of a unity and a fluidity of movement in one’s life. And that’s okay. And the decision may be made to live that way. And that’s fine.
Jenn: For kids that dissociate as a strategy to cope with trauma, is there the possibility of them outgrowing it or letting go of this strategy as they transition to adulthood? Would this, have them avoid a development of DID?
Milissa: Yeah, so kids, children can be diagnosed with DID, and I would say without treatment, they’re going to go on to have DID as adults, but treatment of children with DID tends to be much easier than with adults. It takes less time, children are really plastic and this sort of discreet compartmentalization has not yet really occurred.
So if you can get to a child who’s been traumatized and is showing these symptoms of a dissociation, forgetting things, the amnesia and referring to themselves as sort of having different aspects that don’t feel like them, that are not me, get them into treatment, it’s much easier as a child.
Jenn: Are there treatments that could address dissociation to prevent the development of DID or is it that once you have dissociation, there’s the likelihood that you have DID?
Milissa: Good question. So one really important thing to talk about today is that dissociation is a capacity and people I think are born with this capacity to dissociate. It seems to be almost normally distributed within the general population, there is this kind of tail end where people are highly dissociated, but it’s not abnormal.
It’s a capacity. Some folks can even find it to be very adoptive and sort of a skill in their lives because they’re very able to focus on things, they can do very well in school. They can be very creative. So it can be great, a great thing to really have this intense ability to focus. So that’s dissociation.
So people can dissociate in their lives, people dissociate, become very absorbed in things, that does not mean that you have DID. Symptoms can happen to folks that have never been traumatized in the past.
They’re fully functioning. They have a really strong sort of integrated sense of self, but something traumatic may happen and boom, they have symptoms of depersonalization or derealization or other kinds of symptoms. There definitely are treatments out there that can help with that.
And an adult that has never really experienced dissociative symptoms before, if they experience a trauma and they start to dissociate, they’re not going to end up with DID again. This is a childhood development, developmental adaptation, it’s not just going to come from nowhere.
Jenn: How can a person differentiate between DID and intrusive thoughts from psychosis or OCD?
Milissa: Good question. The sense with DID, it’s very internal, like with folks that have symptoms of OCD, these are very internal, folks with psychosis this is going to be very internal. I think we had talked about voices, voice hearing, this happens in DID, this happens in psychosis.
And while I think it’s not quite the same in OCD, there is this sense of ego-dystonic thoughts that come about. But again, they’re very, very different diagnoses. You look at the developmental antecedents, when did the symptoms first start?
These kinds of, not me thoughts and auditory hallucinations tend to be within the mind for folks with DID, with psychosis, they’re oftentimes heard outside of the mind and with people that have OCD, there’s not this personification.
I don’t think that they experienced their very intense ego-dystonic thoughts as separate senses of themselves, they’re very aware that this is them. So I see the question and there can be confusion about that, but if you really drill into it, they’re very different.
Jenn: I know we’re bumping up against the hour. So I did want to ask you just two more questions, I promise. First and foremost is, what are some of the more popular forms of therapy to treat DID?
Milissa: The one that I talked to, talked about with this phase oriented treatment, that’s the one that’s been studied, that’s the one that’s recommended. Some folks may think about EMDR or prolonged exposure or cognitive processing therapy.
I don’t recommend those kinds of empirically-based treatments, which work fantastically in many situations for PTSD. I don’t recommend starting with those types of treatments for DID. Again, you spend a long time stabilizing working on the treatment alliance, getting symptoms down before you even begin to approach trauma focused work.
And that’s what CBT, PE, and EMDR are all about, jumping into the trauma focus work. You have to be ready for that. Can people with DID benefit? There are case studies about this, where when they’re well along in treatment, they can, but you don’t want to start with it.
Jenn: And I know that you are one of the leading experts in this field, you have given us so much information already. But my last question is, do you have any other nuggets of knowledge that you would want to share with people tuning in about DID?
Milissa: Oh well, thank you. I think I had said when answering one of the questions that the web can be a hotbed of misinformation about DID, and I did want to recommend a couple of things.
I have a colleague and friend named Olga Trujillo, and she is an attorney who wrote a book about her experience having DID, she’s very public about it, called “The Sum of All Parts,” but what I’m actually recommending, she has a wonderful blog on the internet full of fantastic advice.
And so I would recommend looking at her blog. It’s wonderful. There also is someone, I don’t, I’ve never met her, her name is Carolyn Springer. I’ve looked up at her blogs. She is someone herself who has DID as well. And she’s a tremendously gifted writer and she knows more about DID clinically than most folks I know. So Carolyn Springer’s blog is fantastic.
The last thing that I’ll mention, there are a lot of books out there, again, that are very sensationalistic. A lot of books that really focus on horrible descriptions of childhood abuse that can be very triggering for folks with DID. Another friend of mine, Dr. Robert Oxnam, who also is public about his DID wrote a book a number of years ago. So I would recommend that as well.
Jenn: Amazing. Dr. Kaufman, you have been, you are such a great resource. You are so easy to talk to. I cannot thank you enough for sharing an hour of your incredibly busy schedule with all of us to talk all about DID and continue to spread true information and education about it.
So thank you from the bottom of my heart for all of your participation and all of your comforting words. So thank you for joining, and to anybody who is tuning in thank you for joining.
This actually concludes our session about dissociative identity disorder, but until next time, be nice to one another, but most importantly, be nice to yourself. Dr. Kaufman, thank you so much again, and thanks for tuning in. Have a great day.
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