To Understand Dissociative Identity Disorder, Here Are 6 Facts to Keep in Mind

I wrote and shared this with friends over a month ago. Similar to a post I wrote several years ago publicly acknowledging my eating disorder, it felt scary and freeing all at once. I was worried people wouldn’t understand, but they did. Even better, people opened themselves up to me. Recovery does not happen in isolation and I wanted to share my experiences with more people, hoping that what I write will resonate with others.

I’m not really sure where to start. I always have so many dialogues, beginnings, questions, ideas, thoughts and concerns going on all at once, competing with each other, that it’s hard to know where the best place to begin is. Do I start with a definition? Do I tell you about the support group I went to for the first time and what that triggered in me? Do I explain what a typical day is like for me? Do I explain there is no typical day? Do I give you an example of one of the most recent intense days I’ve experienced or something else? I know it’s not possible to fully communicate my internal world and I’m not sure I would ever want to do that anyways.

I guess I will start by saying that I’m struggling a lot with accepting the diagnosis of dissociative identity disorder (DID), and yet somehow it’s the one that was less shocking to me by the time my team and I began seriously talking about it. I still remember vividly when I was first told that I had anorexia nervosa and when my therapist told me I was literally wearing the illness. It’s not that I didn’t know I was sick, part of me knew that. But there was also a lot of parts that couldn’t grasp what that meant. I wasn’t seeing what others were seeing and it was easy to trick myself into thinking I was fine as I went about my day. It was only when night set in and I lie awake all night feeling the uneven beating of my heart and freezing under a pile of blankets that I wondered if I would still be alive by morning. And then I would forget it all again the next day.

I had the same reactions to being diagnosed with PTSD and depressive disorder. I’m not sure if I couldn’t see, didn’t want to see it or I had just become accustomed to things being the way they were. Again, I think the fact that I am pretty functional in life (until I’m not and even when I’m not I am somehow) lulls me into thinking everything is fine. I’m so used to running on adrenaline, continuing on no matter what and hiding my symptoms even from myself that when things are pointed out to me or I stop to take it in, I’m always in disbelief at how not OK I actually feel.

My team (current, past and everyone in between) has been tracking my symptoms for awhile now. DID was not an overnight diagnosis and I don’t think it is for anyone. It can be pretty hidden and its symptoms can look like other things, and to make things more complicated in my case, my eating disorder was so loud and present for most of the time that it masked a lot of things and out of necessity it had to be the focus. In retrospect, I think DID was something talked about from a variety of angles, but never was mentioned until my last time in residential treatment, or rather afterwards.

There were two specific occurrences that made what my now primary therapist was thinking more concrete. The first was the dramatic changing of perspectives and reactions to going away to residential treatment. I went from being terrified that I wasn’t going to make it in time and hoping I would get called to come at once, to believing that there was no reason for me to go and almost every other scenario in between that you can imagine. When I first arrived at the facility I was in such a high state of panic and completely dissociated from reality that on my third day I called for a car to come and take me home and would not speak to my treatment team or let anyone talk me out of it. I convinced myself I was fine and that it was unsafe for me to be there. I remember being in the car with my luggage and pulling away from the house wondering why I was in the car and wishing the car would turn around and take me back. I was not OK and was running away from the help I needed. I was in disbelief at what just happened and very scared. Fortunately a few days later I was able to readmit.

I felt like an entirely different person entering the facility this time. In between the days of leaving and going back, I was unable to see my treatment team as I was too high a risk, but I did get to speak to them. The phone conversation we had apparently confirmed with my therapist that I had DID. I do not remember much of the conversation except the intensity of it and screaming at my therapist that I hated her. I was terrified and in distress and very much trapped in the past. Fortunately she was able to see through the terror I was experiencing.

This correct diagnosis marked a huge turning part in my recovery. I am convinced that without it I would have relapsed hard by now. Not that things have been smooth sailing even on the eating disorder front, but there has been undeniable progress. I am fortunate to have a team who understands DID and who knows how to work with parts. And throughout this recovery process, even before this diagnosis, I feel like there were little insights along that way that now make a lot more sense, both to me and to the people who have worked with me.

So what is DID? I forget sometimes that most people don’t know what DID is. I’m so used to being in therapeutic settings these past few years and being around others fighting their own mental health battles, I forget that people don’t understand what eating disorders, complex trauma, PTSD, DBT skills, dissociation, EMDR, etc. are and may not have even heard of any of those things. Very recently I attended a support group I had never been to before. I knew the therapist leading the group and two of the people in the group, but everyone else was a stranger to me. I gave a couple supporting comments to someone else’s experience and then at some point realized that in order for me to fully explain my experience and reaction to things, I would need to mention DID. At the time I also thought it was a group I might come to on a regular basis so I felt I needed to give people some background. We had a chance at the beginning of the group to introduce ourselves, tell about our diagnoses etc. but I glossed over mine to the point of them being non-existent. I think I was in “fine girl” mode where I magically didn’t have any eating issues anymore and everything was going as planned and I really had no idea why I even came to the group.

Anyways, mid way into the group when trying to explain my complex response system and opposing internal dialogues, I shared that I had DID. One person asked what that was. I felt myself starting to melt away and the room got hazy. I scanned the room trying to find some help. I looked at the therapist and she looked back at me in what I think was in a reassuring way, but at the time I thought why isn’t she seeing what is happening and helping me? Suddenly I heard myself talking, but it didn’t seem like me. The voice sounded outside of myself and it seemed very assured and clear.

I’m not sure how I was speaking so calmly. It didn’t feel like me because I was physically trembling and felt faint. As this voice (me) explained to the group, everyone has parts and everyone sometimes has opposing thoughts and feelings. A lot of people even disassociate, at least partially. With DID a person can have a lot of parts, but they are not in contact with one another and they have a tendency to operate separately. In fact, not all parts know about each other. Parts have different memories, feelings and ways of being. There’s a sense of disconnect in the person, a kind of extreme compartmentalization that is really effective (to a point) for functioning. People with DID also experience memory gaps, lose time and do not see themselves as one. And the different parts of self all have different roles or reasons for existing. DID isn’t about a person having multiple personalities or being multiple people, it’s about having very different feeling states and identities attached to specific parts or states. DID is a coping strategy that someone develops in response to trauma at a young age. It’s a way to survive. (I think I’ve written this out clearer and more fully than what I explained in group, but even reading this over I wonder if people will still be like, “huh?”)

To lay it out in more detail here, here are six facts about DID.

1. DID is often hidden, particularly in one’s early years.

Most people with DID aren’t diagnosed until they are adults and often it is revealed after they have escaped whatever trauma/traumatic environment they were in. DID isn’t really seen and therefore cannot be treated until it is safe to “come out” in a way. DID can be subtle, so subtle that parts can even be hidden from the people who have them. People with DID might experience their lives as chaotic and difficult and know that they experience intense feelings and reactions, they might struggle to explain things and find their memory is fragmented, but they might not be able to recognize parts (especially if not in therapy).

“Their fragmentation may not be recognized until attentive emotional intimacy with another human being, often a therapist, allows it to be known.” — from “Understanding and Treating Dissociative Identity Disorder: A Relational Approach” by Elizabeth F. Howell

2. DID is often misdiagnosed as something else.

“Research shows that people with DID spend 5 to 12 years in the mental health system before receiving a correct diagnosis.” — from “Understanding and Treating Dissociative Identity Disorder: A Relational Approach” by Elizabeth F. Howell

Although most people with DID have depression and PTSD, sometimes those issues are focused on rather than the underlying dissociative parts. Similarly, people with DID have sometimes been misdiagnosed with bipolar and borderline personality disorders, among other diagnoses. Obviously this is problematic because an incorrect diagnoses means the person is not getting the right help.

3. People with DID experience full and partial disassociation.

People with DID are able to be in two (or more) states of mind at once. For example feeling that something is really wrong and having a strong reaction, but knowing where they are and realizing nothing is actually wrong. The experience of DID is very much internal which is interesting because people with DID are both highly aware of themselves and confused by their identity at the same time.

4. The majority of people with DID have experienced complex and prolonged trauma usually at the hands of people who were supposed to be their caretakers.

DID is a trauma disorder. DID is also “the result of disorganized attachment. The self does not begin as a unity. Consequently, the dissociative fragmented self is not so much a ‘shattered self’ as one in which early attachment dilemmas dictated disorganized attachment while the early interpersonal environment did not facilitate integration.” (Howell)

5. DID is not a fantasy and it is not schizophrenia.

Various brain imaging studies have revealed that people with DID are no more suggestible than anyone else and also that they have a higher degree of self-awareness than other people. In addition, although people with DID can experience intrusive memories, flashbacks, auditory hallucinations and report hearing voices, when these things happen a part of them knows they are not real. As well, the voices they hear are internalized (e.g. a scolding or shaming part, a critical part etc.) and not external. When this happens people with DID may fear they are ‘crazy’ because they wonder how they can be experiencing something like this and feel it is not normal. In contrast, someone with schizophrenia is not always able to discern if something is real or not, and a lot of what a person might experience feels external.

6. People with DID are not violent to others but may sometimes cause harm to themselves/act out on their bodies (e.g. eating disorders, self-harm, maladaptive coping behaviors) as a way to deal with the intensity of memories, feelings and internal reactions.

In fact, it is far more likely that people with DID will be hurt by others than the other way around.

The thing about DID that is most frustrating to me is my conflicting ability to believe in it, accept that I have it, deny it, deny parts, embrace it, be afraid of it, forget about it, etc. I guess it makes sense since most likely every part has a different understanding of it and different way of coping. It doesn’t help that DID is not accepted by everyone in the mental health field despite being in the DSM. Some think people with DID have been incorrectly diagnosed. Some think people invented it. Some think it is caused by therapy. All of the voices that invalidate do a great deal of damage to anyone with DID. Not only do they add shame and confusion to their existence but also make it hard for people to get the right help. I already attack myself enough and tell myself I am liar and a disgusting worthless person (because some parts cannot bear it), so it is really harmful to be confronted by those kinds of attacks externally as well as internally.

I really encourage people to learn more about DID just as I do with other mental health issues. The more real information is out there, the more empathy we can have for each other and the greater impact we can have on removing stigma. In writing this, I feel sort of like I am doing something really out of character for someone with DID — revealing myself. I’m not sure if I am doing it because I know that doing so with my eating disorder has helped greatly, and also that being real and open with my treatment team has really brought about some healing, or if it’s because I’m trying to understand myself and one way I do that is through writing and sharing. I also have been thinking lately that a lot of the successful recovery stories I’ve read about people with DID were of those who came forward and shared their story and empowered others to do the same, and that makes a lot of sense to me because I know how sick I feel when I keep everything in. It’s frightening opening up and I think some parts are very against it, but I also would like to think I have parts that know how to heal, and that by opening up, they are helping the parts who are scared and still stuck in trauma time. Some might consider me to be broken or fragmented (or maybe that’s just me because that’s how I feel sometimes) but I am also full of light and hope and I’m learning to let love in.

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