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6 Challenges You Might Not Associate With Dissociative Identity Disorder

Life is complicated. Life with dissociative identity disorder (DID) is even more complicated. I was officially diagnosed with DID late in 2016 at the age of 39. I had been in treatment for an eating disorder I had almost my entire life since 2013, finally able to get help to recover.

When I was finally correctly diagnosed with DID and Complex PTSD, I felt truly seen for probably the first time in my life and I began to heal. Slowly, bit by bit, my traumas were seen, heard and validated by my treatment team, in particular my primary therapist. Parts of me that were dissociated from me, that felt too terrorized to come out, began to feel safe enough to be seen and heard. Having someone attuned to me has been so critical to any progress I’ve made. My eating disorder started to take up less space to the point where I now have very little eating disturbances. I do not mean to make it seem all neat and linear because it wasn’t and it isn’t. I just want to stress that when I was finally correctly diagnosed there was space for me to begin the slow and grueling process of healing, something I wanted for a very long time.

I’ve written a bit about DID before and my recovery process in general. There’s so much I want to say and eventually I’ll get it all out. But right now there are a few specific things I want to talk about related to trauma and dissociation, specifically a little about what it’s like to have DID. In accepting I have a trauma history (although I think some parts still struggle with this, pushing back because it’s something hard to grasp and sit with) and accepting I developed DID as a survival mechanism, there are some things I’m just starting to realize. Many people don’t really understand DID and if they do, they don’t always think of the following issues in relation to it, or at least not the gravity of them.

1. Identity

I don’t always know who I am. I often don’t feel real. Other times I feel too real, everything feels too real, too intense. Identity is a confusing subject to me because it can feel so chaotic inside and so threatening and uncertain outside.

In elementary school some kids asked me why I was talking with a Southern accent. I had no idea what they meant. More than once in my life someone has pointed out that I used “we” when referencing myself (I hadn’t realized I did) and on occasion I’d be mocked with some remark like, “Oooh, the royal ‘We.’ Who does she think she is?”

In grade five a teacher flipped over my desk and told me “that got your attention” after she had apparently been calling my name and standing in front of me for awhile. She didn’t know (or care) that I was in fact dissociating, probably trying to calm myself down. In undergrad a professor casually said, “It’s like you have multiple personalities or something.” In residential treatment for anorexia, a therapist told me she wasn’t sure what my personality was, it was like I didn’t have one.

Through all of this there have been times when I have felt completely alone, terrified, invisible, humiliated, not understood and on the edge of collapse. I didn’t feel like anyone could see the real me. Sometimes I struggle with this still, feeling like I’m just beginning to be seen. It’s a vulnerable time.

2. Dysmorphia

I’ve never felt OK in my body. Most of my life inhabiting my body has felt physically painful, dangerous and confusing. A lot of times my body doesn’t feel like mine. I regularly leave my body and detach myself from it, disown it. I used to think it was all eating disorder-related and obviously that did impact me, but eventually I realized there was more going on. With anorexia, I often felt much bigger than I was. My brain was offline and I saw myself through the eyes of someone deep within an eating disorder. Once I started to recover, though, it became apparent that my dysmorphia was more complex and not relieved by maintaining a healthy weight. In eating disorder day treatment, after inpatient and residential, I frequently felt myself get very small and it often happened during meals. I became a very young and frightened child, unable to speak and who would just cry and shake, occasionally running off to hide.

In fact, my body seemed to be constantly growing and shrinking and changing in appearance and sensation. Sometimes I felt I couldn’t operate my body, but was outside of it watching it. Sometimes I felt like a passenger in it, unable to move my limbs the way I wanted to. Other times I would feel trapped inside it, panicked and unable to get away from it. There are some parts who would prefer to be without sex or gender, who can dissociate from the body until something happens and suddenly they are aware they are in a female body. Young parts can also become distressed when I begin to switch into an older part and they sense that their body isn’t little. They get a glimpse of a woman’s body and become confused and sad. The sensations of switching to parts who are different ages and genders can be intensely emotional and physical jarring even when switching isn’t abrupt.

For awhile I was afraid to look in mirrors because I couldn’t see myself or didn’t recognize who I was seeing; my face and body looked too different every time. At the same time I sometimes would take photos of myself in the mirror, and then compare the photos later, looking for evidence of which part of me had been out.

Fortunately now, a few years into treatment with a greater understanding of my parts, I’m better able to cope with switching because I understand what’s happening. I have skills I can use to stabilize myself in the present, such as noticing and describing objects in a room. I can open up my vision and see the space around me and know I’m OK. I have to work really hard to focus on what’s happening externally rather than going inside, because when I go inside it becomes much harder to manage pretty much everything. I can trust my body is the same as it was the day before despite how it might feel. I can appreciate being in an adult body because it means we survived.

3. Attachment

Trauma in early childhood can cause disorganized attachment and DID. Many people think of trauma in childhood as being abuse, but it can be other things such as illness (self or parent), emotional neglect or separation from caregivers. For me, there was a whole host of things that caused disorganized attachment and the development of DID.

I have choppy memories of abuse occurring at the hands of different people beginning at a young age. Sometimes the memories feel so real and present. Other times they fade into the background so much that I tell myself they never happened. But in my gut I know they did.

My very first time in residential treatment for anorexia the dietitian there, after our first meeting, told me that I had extreme abandonment issues. That was the first time I had ever heard that and I had no clear idea of what it meant. The staff seemed to realize I had a serious trauma history but I couldn’t even see it for myself then. I have seen and felt the depth and pain of all of this in therapy though, as attachment issues have played out time and again.

I am painfully attached to my therapist and worry about her constantly, always fearing I will never see her again and always trying to gauge her mood and responses to me. I think all parts do this to some extent, but younger parts are the most obvious and unrelenting about it. There are some older parts who sometimes try to push her away because the connection hurts too much and they are trying to protect us. A couple parts even feel shame and resentment around attachment. They worry what will happen if she did leave us. The time between sessions is difficult. In the first two years there were countless emails and phone calls, sometimes even immediately beginning after a session. There was near constant distress and crises.

It has gotten better over time, more parts trusting that she won’t go away, she won’t hurt us, but it’s still quite intense and there are times when we get triggered and are flooded with overwhelm and the need to hear from her becomes desperate. Sometimes it’s necessary to have a phone check in and other times I have to practice trusting that everything in the moment is OK and nothing has changed. I’m not always able to communicate this to other parts and emotional regulation is difficult. Acknowledging and dealing with attachment issues is probably the hardest aspect of therapy for me.

4. Intrusions

I am bombarded by intrusions all day. These intrusions can come in the form of emotions that don’t match what’s happening in the current moment, emotions that are too intense, flashbacks in the form of images, sounds or smells (or experiences, sounds, sights, smells, etc. that cause flashbacks), body memories, thoughts and urges.

Internal voices are almost constant. I can hear and feel them inside me and at this point generally recognize who is talking. They ask questions, make comments, contradict one another, cry, scream and in general seek to be heard. I’m not afraid of them the way I once was, but I do still feel overwhelmed by them at times, at a loss at how to calm them. When it becomes too quiet inside, I worry. Not all parts talk to one another nor do all parts talk to me. There are pairs and little clusters who do talk to one another, but also a a few who are completely alienated from everyone else. It can feel like a puzzle understanding what’s happening inside. And it matters because what’s happens internally can impact how I manage externally.

Intrusions can also haunt my sleep, causing nightmares and body pain. I’ve had chronic insomnia for as long as I can remember. But, in part due to processing some trauma, I have have actually started being able to get sleep these last few months. Much of what I’ve outlined can be categorized as Complex PTSD symptoms but some of it, the dissociated parts, are most often associated with DID.

5. Memory

My memory is fragmented, but I have memories. They pop in and out. I remember, then forget again; it’s hard to follow any chronology or narrative. Sometimes I have a distinct image, thought, emotion or bit of dialogue pop into my head out of nowhere. Sometimes I even connect the dots. It’s not that I don’t have memories, I do… it’s just that I forget them sometimes almost as soon as they surface. At times I even forget that I have DID, that I have trauma, that I have PTSD symptoms that feel like they surface out of nowhere. I forget that I forget. Maybe because sometimes I still need to in order to function. I forget until everything hits me all over again and I can’t forget. My nervous system never gets a rest.

From the outside I might seem hyper-organized. I have lists for lists, multiple calendars, notes to myself and systems in place to keep me organized. I work full-time and always have multiple projects I’m working on. I have appointments to get to, bills to pay, errands to run, an apartment to keep tidy, meet-ups with friends to organize, just like a lot of people do. I’m obsessive about time, schedules and keeping up with things because I have to be. My memory is kind of glitchy, it doesn’t operate seamlessly; there’s not a lot of consolidation of memories across parts of myself.

The first time I ever talked about DID in group therapy I described it as an extreme form of compartmentalization. But it’s more than that. I have parts in my system that hold onto different memories and knowledge. The purpose seems to be to protect me, spread out the upsetting stuff across parts. This is smart because it allowed me to function — having access to all the memories and emotions would have been dangerous. I could dissociate from my own trauma and carry on as though nothing was wrong. The eating disorder I had played a role in all this too, enhancing dissociation and keeping me distracted from the painful realities.

In the past few years I feel like layer after layer is being peeled away, slowly and deliberately. Little boxes within boxes and files within files are being discovered and opened for the first time. Memories are carefully retrieved and handled. The person I was before beginning this recovery journey doesn’t seem real, they seem like a mirage. I hid from everyone, including myself, because I had to. But I’ve always been curious and someone who loves to learn, and sometimes I think those traits helped keep me going during the times it felt too unbearable. It has been a fight to get to where I am today, but there is so much more work to do.

6. Communication

I think in some way I’ve always known I’ve had parts. I’ve felt very different and outside of things my whole life, but I never realized how my parts functioned was part of that. That’s just how things were. It’s similar to how I viewed the trauma I was experiencing. I knew it felt bad, but I also thought that’s just how things were. I had no idea about dissociative identity disorder at that time nor an understanding of attachment, intergenerational trauma, gaslighting or anything like that. It wasn’t well into adulthood that I was forced to acknowledge dissociated parts of myself because they wouldn’t let me ignore them any longer.

The first time I remember a part desperately trying to communicate with me I was at home in my current apartment. I had been in intensive outpatient treatment that night and earlier that day had a a therapy session. I can’t remember if there was anything that day that might have triggered this part to step forward in the way they did. I just remember “coming to” and finding my legs, stomach and arms covered in words and phrases such as “I hate you,” “You disgust me,” “Pay attention,” “I’m here”, “Stop,” “You suck,” “Why?” and more in black marker. I freaked out. Who wouldn’t? I don’t remember writing on myself. I knew I had been home the entire time, so who else could have done this? Inside I could feel someone say, “I did,” but that didn’t settle me, if anything it freaked me out more. I took photos and sent them to my therapist, desperate for an answer.

After talking with her and the rest of my treatment team, it was clear that some part felt like I wasn’t listening to them, much less acknowledging their existence. They were in pain and this is how they chose to reach me. Maybe not the best way, but it got my attention. In therapy we tried to understand what was upsetting this part, but without them coming forward it was hard to know exactly. When it happened again, similar messages in black marker, I didn’t freak out the way I did before and I didn’t shame that part who did this. Instead I tried to reach them inside, asking what was wrong and what they needed me to know. I let them know we were listening and that I wasn’t mad. I wanted to help them. They could come to therapy too, they deserved to be seen and heard. After that this part never wrote on me again, although it was awhile before they felt safe enough to come to therapy on their own.

Communication with parts (and among them) and with my treatment team is incredibly important. For me healing is learning about my parts. It’s one thing to have awareness about them, but actually learning what they are like, how they function in the system and what they need is vital. It takes patience, understanding and willingness to get to know and work with them. There are some clinicians who believe in only talking to the part that functions most in the day to day (sometimes called the host) and who ask that other parts talk through the host. Fortunately my therapist isn’t one of them. All parts deserve to be seen and heard, in fact this is crucial for healing. I simply can’t speak for all parts. Denying parts the opportunity to share their experiences is damaging. From my experience, telling a dissociative patient to stop dissociating or snap out of it is ridiculous and will only make things worse. I believe when a person with DID is told their parts aren’t welcome and they must stop dissociating, it’s not only shaming, but also invalidates their trauma history.

The Way Forward

The goal for me is to have all parts feel seen and heard so that every part of me knows they are valued, we are safe now and we can work together effectively. This doesn’t mean that all parts will reach agreement all of the time. In fact, there are some times when a part may not get their way for the greater good of the system, but hopefully they will respect that. Our ability to take care of ourselves in this world, not live in a constant state of hypervigilance, form healthy connections with others, and love and care for ourselves are the priorities. We survived, but we know it’s possible to thrive.

Photo by Sharon McCutcheon on Unsplash