Let’s talk about the healing journey
How is DID diagnosed?
What is coconscious vs. non-coconscious DID?
What does depersonalization, derealization, amnesia, and identity confusion/alteration look like?
How does denial play into this? How to counter it and how to cheat it.
How can others pick up on other personalities coming out, and why is that important?
Is all DID the same?
The healing journey in DID is long and extremely trying. Unfortunately, many don’t even get to start that journey because they never know they are multiple. Maybe about 1% of the population has DID. Of course, we have no idea how many have DID but don’t know it. Studies suggest that those with DID may be in the medical care system for many years before they are diagnosed. This is because very few people come for help specifically to be treated for being multiple. More often presenting symptoms may be physical pains or illness, emotional stress (anxiety, depression, addiction), and /or psychological disorders (schizophrenia, borderline, bipolar) which may either be co-morbid diagnoses or misdiagnoses. Our experience and that of others with DID with whom we’ve spoken is that very, very few clinicians, psychiatrists, or counselors know even the basics about DID, not to mention how to help individuals suffering with it. We have many friends who have therapists whom they’ve had to educate about DID in order to get help. Obviously, there is a lot of professional education that needs to happen. We, too, experienced many counselors over the years who never perceived the DID, or even asked about the symptoms of DID, and did a great deal of harm in our journey. Thankfully, there are some advocacy organizations out there to educate clinicians and the public. Two of many resources are the Sidran Institute and the International Society for the Study of Trauma and Dissociation (ISSTD).
No one should diagnose DID in themselves. Professional help is necessary. However, there are various clues that should make one suspicious. Before discussing these clues, let’s talk about coconscious vs. non-coconscious DID. If one is a coconscious multiple, the recognition of others inside can take the form of voices, inner friends, or protective parts that can be counted on to come out when needed. There can be situations where a personality inside is watching the personality on the outside who is interfacing with the world. Sometimes there is the sense that you’re not really attached to the environment but talking through someone. No matter how this occurs in a multiple, this is normal for that person, so it raises no suspicions of a disorder. Often a person who is coconscious, is only conscious of some of their other personalities, and they know nothing about other personalities. At the other extreme are multiples who have no clue that there is anyone else inside. The personalities take executive control based upon some usually unknown trigger, and even if they recognize that they are in a difficult place, the cover-up of that, and the mental exercise needed to make this “normal” in their perception, are well practiced. This is just life for a multiple who is non-coconscious. For example, in retrospect we would often not know why we were in a particular city, but that “problem” never lasted very long. Almost immediately either the correct person came out, or there was some other way to discern why we were there. While it might have been scary for a moment, that didn’t last long. Our normal coping mechanisms kicked in so rapidly that everything was “OK”. We never suspected that we were multiple.
Now back to the clues. One of the tests that can be self-administered is the Dissociative Experiences Scale (DES). A copy of that can be found here. The more rigorous clinical interview is the SCID-D. In essence both are trying to determine the signs of dissociation by asking questions about depersonalization, derealization, amnesia, identity confusion, and identity alteration. Much of this is described on the tab What is Dissociative Identity Disorder? Let’s look at them in more detail.
Depersonalization is the state in which you feel like your body is not your own. Maybe it’s a robot. Maybe it belongs to someone else. Or your thoughts don’t seem to be your own. You may be in a fog state or looking at yourself acting or speaking. This can happen and is actually quite common in anyone after a severely traumatic event. It’s a type of psychological self-defense. It can happen in panic attacks and severe anxiety. It can also occur after seizures, in various brain diseases, and with the use of certain drugs. However, it is also an attribute of having personalities that don’t have a good sense of operating as “self”. We’ll talk more about self and identities in future posts.
Derealization is highly related to severe anxiety. It’s best described as the sense of being in another world. Time, space, or specific details may all seem unreal. Sometimes space is distorted, like being in a tunnel or a globe. Sometimes distances don’t exist or everything is in slow motion. Again in DID it may be associated with severe anxiety, or it may be related to a personality seeing a world in which they’ve had no previous experience. For example, it’s pretty common for a child personality (Little) to come out and everything looks HUGE to them.
Another very important characteristic of DID is the issue of amnesia. The degree of amnesia can be quite variable, but it is always present. Early life is often “not there”. Basic life facts like age, address, personal identifiers, etc. may not be remembered. Missing time is a classic presentation for DID. One personality may notice that they have no idea where the past minutes/hours/days have gone. They have no memory of it because another personality was using the body during that missing time. The ability to create real-time memories, like what you just did in the past hour, may be limited at times. Until one realizes that there are multiple personalities, all of this can be very hard to explain. However, not all of the amnestic events are explained by memories being held by different personalities. We may talk about this in future blogs, but there is very good evidence that the early childhood trauma related to DID changes brain structure and function. Furthermore, most people with DID live in a constant state of stress or anxiety, which also decreases memory function. So not remembering is often a very difficult aspect of living with DID. We like to tell people that we’re now coconscious, but we’re not co-memory. It’s different with everyone. Just last night a friend asked us about an afghan we made last Christmas. We have no memory of it at all. Someone does, but we haven’t found that someone. “Sorry, I don’t remember,” is a daily part of our life.
Identity confusion and alteration are very related, so I’ll treat them together. This in some ways is like being a teenager all over again. Also, people can have identity crises, in which they don’t really know who they are, especially related to major life events. In DID it can be more severe. At one time you feel like a child and then you are old. You can’t relate to someone else inside, whom the person you’re with just saw. As various personalities come out, there are changes in tone, voice, demeanor, world view, etc. These are the sorts of symptoms that help others recognize DID in you. If you’re non-coconscious, however, you’ll never see these symptoms in yourself. Others may say something to you, but you’ll have no explanation for what they are experiencing.
Given that all of these symptoms seem rather “extreme”, short of having a major panic event, one might wonder why DID is not diagnosed more often. I think that while we may experience many of these symptoms, they are either so “normal” to us that we ignore them, or we use the extremely useful defense mechanism of Denial. There really is no DID without denial. Somehow the child has to still interact with abusive caregivers. Somehow the survivor needs to create a tolerable reality, a world that makes sense. Somehow the events of horror themselves have to be dismissed from interfering with day-to-day life. All of this requires very strict inner codes of denial. In addition, perpetrators often encourage denial by telling the victim that everything that happened is their fault and/or by repeating that nothing happened. Unfortunately, this level of denial in later life can severely limit diagnosis and treatment. It’s not uncommon for the dissociative tests discussed above to come up negative or suspicious only because the victim instantly denies the symptoms they may have experienced. If a person gets to therapy, denial can prevent certain personalities from speaking, prevent personalities from doing memory recall work, and even prevent the victim from returning to therapy. We know a multiple who did memory work for years, and then a denial personality showed up and they quit therapy, claiming that the counselor had been deceiving them all this time. How denial plays out in a given survivor may vary, but our experience is that there is usually at least one personality who acts almost exclusively in denial. That personality is often very powerful and in some cases is even the most commonly seen personality (what we call the Primary Presenter). So if you are wondering if some of the symptoms we’ve talked about are present in your life, think about whether you are trying to deny something that is real.
Let me note here that the best way to counter Denial is education. If you are all alone and you don’t know anyone else who has gone on this journey, denial can have full reign over your life. We know that constant remembering of what we’ve learned and what we can document that happened is essential to counteract denial. To that end we keep meticulous notes of our therapy session. One of the great frustrations of learning about the past is that there often is no way to document anything. Perpetrators, if known and still alive, uniformly deny all charges. Other family members may be afraid to talk. Details of events may not allow exact localization. So one has to push through the memories without having physical confirmation in most or all cases. It’s hard – really hard.
On the other hand there is one way to cheat Denial. This is the best single piece of advice we received very early in our journey. You need education – about DID, SRA, MC or whatever you learn from your memories. BUT don’t read/ watch/ listen to personal stories. Not yet. If you know nothing about the specific events of anyone else’s story, Denial can’t say, “Well, you read that somewhere,” when you have a memory. We went through 10 years of therapy until we felt like we’d uncovered the vast majority of what was there, and we know we didn’t learn those memories from some other place.
Whether you’re a spouse, friend, or relative of someone with DID, it’s important that you learn how to recognize that a personality change or “switch” has occurred. How often this happens, how severe the change is, what triggers a switch, and the persons own perception of the switch are extremely variable among survivors. At the minimum there may be a temporary pause in conversation, a change of facial expression, a change in voice tone or strength, or a change in attitude. However, with practice people close to the survivor can train themselves to detect these changes. Prior to the diagnosis of DID, most of those attributes, if even noticed, are attributed to the person being moody or absent minded or…… In the most severe of switches, the personality coming out may have zero recognition of what was just happening or even who you are. They may be a different gender or have no recognition of the people, place, or previous events within the past moments, hours, or even days. Many references we’ve consulted say that this latter type of switching is “rare”. Maybe. The point to note is that the survivor has been leading their entire life hiding the fact that they are many, regardless of whether they recognize it in themselves or not. Our experience is that even with an abrupt, massively disruptive switch, the person who has just come out may be confused on the inside, but they will do everything they can to make it look like nothing happened.
One might ask whether you can really pick up on DID in another. We were totally non-coconscious of any other personalities until we had a breakdown in mid-life. It was sudden and dramatic. Once we had a diagnosis, but before we really even had the capacity to talk to others inside, we gathered our teen/ young adult children and told them what was going on with mom. It simply involved the description of multiple personalities and the assurance that mom was going to get better. After a brief pause our eldest, who was in college at the time of the breakdown, said that all of this made perfect sense to him. He and another son had sign language to discriminate which mom was home. If it was the “mom who worked”, you never wanted to talk to her. If it was the “mom who cooked”, you knew that no matter what you asked her, she would tell you to “go ask your dad”. If it was a mom who did various other hobbies, she often didn’t even seem to know who you were. If MOM were there, then you could get what you wanted. Of course, children rationalize everything, and they believed that everyone’s mom was like that. Our mother-in-law also knew the different personalities, although she had no “name” for them. Once informed, she too declared that she only liked the MOM. Ouch. Go ahead – ask about our husband. He was married to a person who just was extremely volatile and changeable…..of course related to “stress”. Who would ever think about a problem like DID?
Those who know or suspect that someone close to them has DID may wonder why it would be important to notice a switch. I think the biggest reason is respect. All of the personalities are there for a reason. Even the personalities that may be mean and violent, are there for a reason, and the reason isn’t pretty. Being aware of a switch helps friends and family to get to know various personalities. If you can respect (not necessarily like) all of the personalities for the contribution they make, the relationship can become stronger and more meaningful. A second reason is that often the victim has no idea they are a multiple. It may take someone who is very close to them to see these subtle changes. If there is a friend or family member who you know had a lot of trauma in their early life, it’s good to at least know the information about DID and give it some thought. Finally, abuse and trauma, as ubiquitous as they are, cause a final common path of self-hatred, shame, self-medication, depression, anxiety, and/or suicidality. This occurs with or without the formation of a split personality, but it’s often severe in multiples. Many studies suggest that about 1/3 of individuals with DID self-mutilate, and the incidence of completed suicide is several thousand fold higher than the national average in the US: cited here. Rather than just “getting over it”, mental health professionals need to be consulted. However, it’s often hard for a person to see the need in themselves – particularly men. Noticing the combination of symptoms, at the very least, may encourage you to get help for another. You may even save a life.
DID is as variable as there are survivors. It’s important that we put stories to the signs and symptoms. What was it like for you before you had a diagnosis? What disturbed you the most? For me it was never knowing my address or phone number, what month or year it was, and why I had just flown to a particular place. What did those close to you think? Did anyone suspect? It may be helpful for another to hear other stories. Share what you are able in the comments below.