Little Did I Know: The Truth About DID

Who am I in this picture? Am I the person you know and have spoken to? Chances are… probably not. When my eye color is this blue, I’m usually not myself. Why? Read on…

CW: Contains discussions about mental illness, hallucinations, hearing voices, mentions of self-harm without graphic description, and childhood/teenage sexual assault and rape without graphic description. I have tried to make this readable for everyone, but if you are not in a good place right now, please take care of yourself first and put this post aside.

When I was about three years old, there was a voice.

Of course, when any child is three years old, a voice doesn’t mean anything. Children have imaginary friends. Children play make-believe. They create their own narratives with their limitless imaginations. In fact, in my thirty-nine-and-a-half years of living, most young children that I’ve known have heard voices.

But there was a difference. The voice helped me “go away” when things that were deemed as traumatic occurred in my life. The voice, red in tone (I’m a synesthete – voices have colors, and the air has varying flavors), guided me away from the thoughts and actions of those looking to harm me. I simply didn’t exist when the voice was around. And the voice didn’t want to have tea parties or play with stuffed animals; instead, she sometimes tried to make me harm myself. Open windows in my second-story childhood bedroom were not safe; kitchen knives and scissors seemed more appealing to my seven-year-old self than most other objects.

Three-year-old me. Yes, I had happy moments. But there were some things I didn’t ever want to talk about.

Doctors spent years trying to figure out who – or what – “the voice” was. I was given improper diagnoses such as Bipolar Disorder and Schizophrenia, and asked to take medications I never needed to take. This was in 1999, the era of “everyone must have either Bipolar or ADD” (before ADD was added into the ADHD spectrum in the DSM). At age seventeen, and lasting until about age twenty-three, I lived in a Lithium, Zyprexa, and Anafranil haze – all while the voice continued to speak to me.

And then, when I realized I was missing periods of time from my life (for instance, I couldn’t remember two years of high school), started waking up in various places and having no recollection of how I arrived at those locations, and hearing other voices alongside the voice I’d known for almost twenty years, I located and made an appointment with a new psychologist. His name was Dr. Palmisano, and during our first session, I clutched my sweatshirt tightly between my hands, rocked back and forth, and begged him to help me. This was in 2005; I’d spent six years wondering why people would tell me I had spoken to them on the phone the day before when I knew I hadn’t, or why I’d drive three hours to a former friend’s home but didn’t recall the route I took to get there, and was consumed with the fact that maybe I was dead, that everything happening to and around me was simply a dream. I couldn’t live that way. I wanted to be “fixed.”

Obviously, people do not need to be “fixed.” There is nothing wrong with having a mental illness (or any disorder/s). It is normal and valid to have any medical, mental, or physical condition, and even while I understood that then, back at the age of twenty-three, I just wanted to know why I, as myself, could no longer function.

And after a few sessions, Dr. Palmisano’s answer was clear:

I was diagnosed with Dissociative Identity Disorder (DID), formerly known as Multiple Personality Disorder (MPD), due to severe childhood trauma that had happened before the age of nine.

Summer 2005 – right after I found out I had been diagnosed with DID. I was a wreck, and very clearly trying not to cry. Also, that face? Not mine, either. I see who that is based on the pout and eye color. DID presents differently in all people, and with some of my system’s alters, eye color changes, outfits change, facial expressions change – and so do invisible things like blood pressure, heart rate, and vision.

I was stunned when he told me, and nodded my head as if to say, “Yes, of course, that makes perfect sense.” But on the drive home from my session with the good doctor, I simply refused to believe it. It didn’t make sense. To be diagnosed with DID, a person had to have childhood trauma, so yes, that part did make sense. I’d experienced trauma for decades, and according to Dr. Palmisano, it was extreme enough for him to confirm a DID diagnosis. But he also said people with DID had two or more personality states. I had only heard two voices, and I was my own person, right – I wasn’t a personality state myself, was I? There weren’t constantly three people, or voices, or personalities – at least not in my line of thinking – so that didn’t mean anything. Other illnesses that I was diagnosed with soon after, such as Multiple Sclerosis, could cause hallucinations or memory loss. Or maybe, I reasoned, I was just in a medication haze. But I did NOT have DID. I’d seen DID in movies and on TV. Those people seemed very ill. They seemed like they wanted to kill people. But I wasn’t like that. I was finishing college, publishing poetry, performing music, and working thirty hours a week. I wasn’t happy, but I wasn’t miserable, either. I was too busy to be miserable. If I could do all of those things, how was I “ill?”

For five years, I hid my diagnosis from everyone: my family, my friends, and even my boyfriend, Toby (who became my husband in 2008). I had told him that my psychologist thought I was kind of like the classic Dr. Jekyll and Mr. Hyde – that I simply had some darkness in my past, so I occasionally lashed out before returning to my “regular personality.” I didn’t understand DID, and my almost-husband didn’t know about it, so we believed in the narrative that I had created.

That belief was shattered on August 24th, 2010, when I suffered a traumatic brain injury with retrograde amnesia. After several hours in a coma state, I woke up, declaring my name was Ruby, denying the existence of my husband, and – much to the shock of everyone I knew – was certain I was married to someone else (and had a series of text messages on my phone to prove it).

This was Ruby in 2010, a week before our traumatic brain injury. Why do I say “was?” Alters don’t die, but Ruby is not the same. Something has changed…

Some of that made sense. After a brain injury such as mine, especially coupled with amnesia, I couldn’t recall the first twenty-eight years of my life. So I made up a name. I didn’t recognize my husband, who was supposedly sitting right there in the hospital room. I said I was married to someone else simply because I’d read texts on my phone that said, “I love you,” and assumed that person must have been my husband. I didn’t even know how to tie my shoes. With an unreliable memory, I was nothing more than an unreliable person.

And I hated my life. My name was Ruby; why didn’t anyone understand that? Why did I have to go home with the person who said he was my husband when I didn’t know him? I was angry, confused, and suddenly, I started hearing voices. This, post-TBI, was new to me. I heard voices. Did everyone hear voices?

When I took a pair of scissors to my throat a week later, a series of psychiatric hospital stays began. Not only were the hospitals helpful with issues such as learning how to eat again, or tie my shoes, or use a phone correctly, but they also were helpful because I was in places with people who didn’t seem startled by who I was (and then, who I seemed to be only twenty seconds later). They encouraged me to work my memory, turning the TV in the rec room to shows like “Jeopardy” and “Cash Cab.” They asked me to sing for them so that I could recall lyrics. And when I’d lose track of time, or a flashback of something that didn’t make sense would hit – they would support me, and tell me that it was okay to hurt. People who had been emotionally hurt were allowed to cry. They had panic attacks. They had to try harder, just a bit harder, than most people in order to do things like shower, shave, eat a meal, stay awake, and simply stay alive.

My psychologist in the first hospital was the one who rediscovered my 2005 DID diagnosis. When he asked me why I hadn’t revealed it, I told him I didn’t know. And I didn’t know – I just heard voices after my brain injury. But he sat down next to me and said, “Not everybody hears voices. Most people don’t. You have this disorder, and you need to accept it.”

By December 2010 – four months after my brain injury – it finally hit me. I had been in a group therapy session in the hospital, and suddenly, I was watching the group therapy session. That had happened before, but this time, I heard a new voice, and suddenly, I was shut out of my life. When I woke up again, as myself, five days had passed. And in front of me was a journal, titled “Shilo: Age 17,” with a beautiful butterfly drawn on the cover (and I, as myself, couldn’t draw a stick figure, let alone a realistic butterfly).

I frantically paged for a nurse to come into my room, and when one did, I broke down.

“Who wrote this?” I demanded. “Who did this to me? Who is Shilo?”

“You are,” the nurse said. “A part of you is, anyhow. You have DID. You created parts, or alters, when you were a child to deal with the trauma you went through – so that way, your body may have gone through it, but not your mind or emotional state. Remember talking to the doctor about assault and rape and family turmoil? How you didn’t remember why your parents were sometimes mad at you, or why you’d ‘go away’ when you knew something bad was going to happen again? You have a system – alters – who come out, or front, and help take care of you.”

“And Shilo is one of them?” I asked.

When she nodded, I looked at the journal, shook my head, and vomited. I couldn’t stop.

It was as though I was purging twenty-eight years of my former life.

#

Time has, of course, changed things, and between December 2010 and now, I have come to learn so much about the disorder I have had since the age of three. I’ve learned the terms, when I know I’m going to switch to another alter, what it feels like after a switch. I’ve learned that I can ‘go away’ for three hours or three days. And because there is no medicine to temper DID – only anti-anxiety medications such as Valium to try to stop panic attacks, or Post-Traumatic-Stress-Disorder (PTSD) medications such as Prazosin to try to stop night terrors and flashbacks – I’ve spent all this time in therapy, discussing my trauma, and letting my system talk.

Systems – a collection of alters – sometimes like to go by the pronoun “we.” I, as the host – the person who fronts (or is out) the most often, and is often born into the body before the trauma occurs – have come around to using the term “we.” But it took some time. And some alters in the household they created in my brain resisted the term. They liked to think of themselves as individuals, and they did not want to cooperate with me.

But in time, with therapy, and with the acceptance of my husband and a few family members and friends (because, to be honest, I lost eighty percent of the people who had once claimed to love me after my brain injury, amnesia, and then my DID and PTSD diagnoses – I knew they were scared, and that hurt, because I felt far more afraid of this new life), we started to become co-con, or co-conscious. I, as myself (the host) would be able to communicate with another alter, and we could both see and hear the same things at the same time. That alter might share past trauma with me; often, that alter would not.

Alters hold traumatic secrets for a reason.

Shilo was the second alter to front after the traumatic brain injury. She tells me that she did not have a “proper name” until she watched a movie about a sick girl who was her age, and that helped her find her name. Since Shilo is a medical protector – often fronting during medical procedures, severe pain, and medical trauma flashbacks – it’s not surprising that she is in this pic from December 2010, right after I returned home from the hospital stays.

And once I learned that, once I accepted that this system protected me, I started to realize that I didn’t want a life without DID. I would have quite literally died without my system. And I became stronger, growing in self-confidence and acceptance. I wasn’t broken, or shattered, or in need of “fixing.” I was capable, and I had learned that from being a “we” – from sharing an entire lifetime with alters.

Media portrays DID in such a negative or, frankly, falsified light. Movies like Split start out as hopeful for those of us with DID – perhaps, maybe, because we see the person with the disorder talking to a psychologist, there will be a kernel of truth in this movie. And then, our hopes are dashed when that person with DID somehow transforms into a literal beast and starts to eat people. Or kidnaps people. Or abuses people.

And when that happens, the public is once again afraid of those with DID – as well as intrigued. Demand for more content about DID grows, and it gets stranger, more falsified, more dramatic, because the audience is satiated. They are curious, and we become their monsters.

But our stories begin with trauma.

We are not the monsters – the people who hurt us before we were nine years old are. (For DID to be clinically and officially diagnosed, a psychologist must deem that a survivor – because that is what we are – has had significant and repeated trauma before the age of nine. After that, as well as confirming the existence of two or more different personality states, psychologists usually begin to ask an alter to front by using positive triggers – for example, a favorite song or stuffed animal belonging to an alter. This can help the alter feel at ease, and come forth to talk about their trauma.) We are not eager to kill people. While the idea of removing abusers from our lives sounds ideal, it is rarely performed by methods such as homicide. Most people with DID choose to move away and cut contact with their abusers, or sometimes, they take on a different name and stay quiet in the hopes they won’t be stalked, raped, tortured, or emotionally threatened again.

The narrative that people with DID are “bad” or “monstrous” needs to be dispelled. So, too, does the notion that people with DID cannot live a “regular” or “normal” life – that they cannot work, have relationships, have children, or find happiness.

Because if that were true, how would I have been able to have stayed married to my amazing husband for the past thirteen years, or have a healthy, happy, intelligent nine-year-old child, or enjoy my new home by the Chesapeake Bay? How would I have remained best friends with someone I’ve known since we were both thirteen (and who watched me switch into altered personality states throughout our friendship and still stood by me, explaining all the times she watched me suddenly act like a different person)? While I cannot work full time – mostly due to physical health issues, but also due to the fact that a little, or child alter, might be triggered to come out and a terrible flashback would harm our system – I still am a published author, a makeup artist, a voice teacher, and a singer.

I have DID. There are thirty-seven known alters within our system. And I still have a life.

This is my life – or two of the most important parts of my life. Toby, my husband, has been so kind and protective. And James, who is now nine, is still too young to know about my condition, but he is a sweet, loving, smart kid. As for me? This was August 2018, during the “Wedding I Can Remember” – our ten-year vow renewal/second wedding, since my TBI erased all memories of my first wedding. This is me, the person typing this entry, in this picture. And yes, I was very, very happy. Most of my system was that day!

So it’s not just monsters and murders; it’s about living. And no, living with DID isn’t easy. I wouldn’t lie and say it is. There are alters in the system who still self-injure. There are flashbacks that leave me speechless for days. There are people who don’t even accept that this disorder is real – including medical professionals, who just deem me “crazy” and call me a liar. (Those who have said that about our system are no longer our medical professionals. No one, no matter their condition, should be bullied about what they do or do not have. On top of that, half a dozen doctors have confirmed my diagnosis. And most importantly, I know my system. No one can pretend to be thirty-seven people in one day. Who would even want to, especially knowing DID is rooted in severe childhood trauma?)

But it’s nice to be alive, to know that I can discuss past trauma with my system (as well as with loved ones), and to continue to grow and share facts, helpful information, and potential positivity that there is more to life with DID than fear and doubt. There is hope.

I didn’t think there was in 2005, or again in 2010. But now I know that there is. And I owe so much of that hope to a system that has kept me around and functional for almost my entire life.

#

In April 2020, as the COVID pandemic raged and people were isolated and quarantined indoors, an event took place that changed my system forever. It was deeply traumatic at first, and then, it turned out to be the best thing that could have happened to us.

One night, I went to bed as myself – the host, the person who has always used the pen name A.E. here, with the name given to me at birth. Nothing was wrong. It was a peaceful evening, and my only true fears were the pandemic and what was going to happen to those I loved. But those fears were global; my personal fears were nothing abnormal.

But at one point, I woke up and was co-conscious with Ruby – the voice I first heard when I was three years old. The name of the person I thought I was when I woke up after my traumatic brain injury in 2010. Ruby was there, as strong as ever. She was once a protector, who kept me safe from abuse. Then, she turned into a persecutor – an alter who self-harmed and created some chaos to the body and the entire system in general because of the trauma she was holding. Finally, Ruby made her peace with who she was and what had happened, and the host and Ruby communicated.

The next day, the host – “me,” the person born into this body with a specific birth name given to me by my birth mother and absolutely horrendous birth father – and Ruby had merged. Fused. Had grown and changed from two into one.

They are now me – the new me. The real me. The person that, when I wake up, I know I am supposed to be.

My name is Lexa, or Lex, and I am the host. I hold the original host’s memories (the ones that weren’t lost to amnesia) and I hold Ruby’s memories. They both exist as me.

Hi, all. I’m Lexa, or Lex. And this pic was taken one month after the host (A.E.) and Ruby fused, or integrated. This is the real me, and the me you will now know from here on out. I can see the difference between 2018 and 2020 – I was very happy in 2018, but in this picture, I look content. I was finally the person I was meant to be.

We integrated, which means that we were not needed separately. So we combined, fusing into one another. And while it is a complicated process, and some of the memories shared were deeply traumatic, and integration could happen again, we are happy. Settled. The system has been calmer since the integration. Shilo, who is seventeen, feels safer to come out. Carmen (a little, so I won’t reveal her age) often plays with our cats and beats everyone at poker. Lucy dresses up and takes photos of herself. Johnny complains that he can’t smoke (no one in the system smokes except for him, so there are no cigarettes here) and talks about taking care of the littles (child alters within the system). Madeleine does laundry and wraps Christmas presents.

And where do I – we, as Lexa, this integrated person with a system due to DID – go?

I usually watch. Or listen. Or sometimes, if I’m trapped within a traumatic memory that I remember far too clearly, I find myself in the basement of the house created inside my mind – a dark place, but a place to relive the trauma and wait for the worst of the flashbacks to pass.

In the end, I suppose I am an alter, and like the other alters in the system, I have chosen a name that best represents me (I do not know how or why alters name themselves specifically; what I do know is that, after I write a book or short story, I realize I have used a name that belongs to an alter in my system. If an alter doesn’t has a name – or even wants one – perhaps they saw the book and/or short stories I wrote and used the name since it fit them? Or perhaps I used their names first. I don’t know, and I may never know. Their names are personal). But if I am part of a system, then I am an alter, too. And while I refused to accept that once, I know this much is true: I am loved, I am protected, and while I cannot erase the horrors of the past, I can absolutely create a better and more cohesive future.

My system works together. We battle demons. We fight misinformation. We range in age from three to sixty, and one alter identifies as ageless (she has been many ages throughout the years – and has claimed to be dead as well). Another – our main gatekeeper – identifies as a mermaid, confined inside a glass tank, spouting off riddles and puzzles twenty-four hours a day. I hear her as clearly as I hear my fingers hitting the keys of my keyboard.

But we function, we exist, and we thrive.

I’m Lexa, or Lex. I have DID. I was severely harmed as a child and as a teenager. I have forgotten twenty-eight years of my life, as well as many memories that other alters have chosen to block to keep me safe.

And I am okay exactly as I am – or, more precisely, exactly as we are.

Thirty-seven of us – and probably more – exist in this brain And that is absolutely okay. I am grateful beyond words that, despite my past, I am here, content, and contain multitudes. My life is not easy, but I’m not unhappy, either. I just AM (which is a good thing), and every single day, I learn more, grow more, and feel stronger and more confident. I may do a lot of hard work, mentally speaking, but so does my system. How could I not be grateful to be alive right now?

Author’s note: This entry was written by the host, Lexa/Lex, who writes under the pen name A.E. and has used this website for many years. We are the person you still know, but we have evolved after the integration. But everything from 2010 forward that was said or happened to A.E. is still our memory. I (or we) just now have all of Ruby’s memories, too. But the only person allowed to write in this blog is me, Lexa (or Lex). That is a system rule, and it’s important for systems to cooperate as best as they can.

I also want to note that I specifically used the term DID, or Dissociative Identity Disorder, within this blog post. That is the diagnosed and clinical term that we know and suits us best. This does NOT dismiss people who identify as plural, multiple, or any other term that fits them and their system. I am not a licensed psychologist (that was the dream once, but alas – it’s too triggering), so I can only speak about my experiences and share credible information about my disorder. But again, this is not dismissing the experiences of other systems, and it is not intended to do anything but help others feel less alone. I’m happy to talk and answer any questions. Please reach out. And please remember that it IS okay not to be okay. Not every day is easy. It isn’t for me – I can promise that! This is a lifelong journey. But it’s a journey we can talk about. There is NO shame. NO stigma. We are real, valid, and worthy of love and life.

2 thoughts on “Little Did I Know: The Truth About DID

Add yours

  1. I am so sorry for the trauma that happened to you. No child should be harmed and I am sorry you were not protected then.
    I’m glad you chose life and have a wonderful family who loves you. ❤ ❤ ❤

    Liked by 1 person

    1. Thank you so very much – you are too kind! I am very lucky that I have a great family and many other ways of receiving support. Our system works and exists because of that. I think DID is so misrepresented and stigmatized – and I’m working to break that as best as I can. 🙂

      Like

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