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Diary of a Newly Diagnosed Dissociative Part 1: Confusion

The first couple of years after my Dissociative Identity Disorder diagnosis are heavily documented in my diaries. The entries tell a disturbing and, I now know, common tale. I wish I’d known that what I was experiencing, as unhinged as it made me feel, was normal for people newly diagnosed with DID. With that in mind, I’ve decided that rather than just tell you what the aftermath of that diagnosis was like for me, I’ll open up my diaries and show you.

Photo by Justin See
Photo by Justin See

A Dissociative Identity Disorder Diagnosis Creates Confusion

Dissociation by nature impedes awareness. It exists to protect your psyche from intolerable realities including the existence of DID. Finding out that you have Dissociative Identity Disorder can therefore be incredibly disorienting. By shining a spotlight on something that was meant to remain hidden, diagnosis also typically exacerbates the symptoms of DID for a time, which takes confusing to a new level altogether.

6/14/2004

I wish I could understand what is happening to me. I feel in the grips of something. Why won’t this go away? Maybe it was a mistake to start seeing my therapist. I feel pulled in so many different directions that I don’t know who I am, what I believe, what I want, nothing – not anymore. I feel like I’ve caused myself to go crazy. Why have I done this to myself?

Confusion About a Dissociative Identity Disorder Diagnosis Feeds on Itself

Over time the entries became more frantic and peppered with interruptions from various system members. The first year after my DID diagnosis, it seemed I couldn’t put pen to paper without someone else taking over.

7-1-2004

An actual page from my diary in 2004. Sharing it is difficult, but I don’t believe most people can grasp the chaos someone newly diagnosed with Dissociative Identity Disorder feels without seeing it for themselves. See the comments for transcription.

Alters May Cultivate Confusion about a Dissociative Identity Disorder Diagnosis

Many of the entries are ridiculing messages from alters designed to cast doubt on the diagnosis.

6/16/2004

You simply can’t stand to be normal, can you? You’d do anything to be different, unusual. You just can’t face the fundamental truth that you are you and that’s all. Why is that not enough for you? Why are you always looking for something, anything, that will somehow set you apart, differentiate you from others? Is your self-esteem really that low?

Confusion Is Normal

I was utterly bewildered by my diagnosis. And though people told me it was normal to be confused, I didn’t know what that confusion looked like for other people. What I experienced was so beyond the pale that I felt sure when people said confusion is normal they meant something far less crazy. Now I know they didn’t. My diaries paint a classic textbook picture of the turmoil a Dissociative Identity Disorder diagnosis can cause. I hope seeing a snapshot of that turbulent time in my life reassures anyone newly diagnosed that the confusion they feel, no matter how extreme, truly is normal.

Complete Series: Diary of a Newly Diagnosed Dissociative

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14 thoughts on “Diary of a Newly Diagnosed Dissociative Part 1: Confusion”

  1. hi holly,

    i don’t know if you are still reading this old blog but i wanted to tell you how very helpful you have been to me the last few weeks. i was diagnosed with DID about one month ago after struggling enormously with all kinds of issues, self-harm, eating disorders, etc., for 30 years, in and out of therapy, emergency rooms when younger, etc. i won’t detail all of it, suffice it to say that i kept trying and each time i would go to therapy i would get worse. finally i started with a wonderful therapist and psychiatrist who referred me to a specialist psychiatrist in dissociative disorders. i am still in shock. i am a very high functioning successful professional, i am a good and devoted mom with two terrific kids, i have friends, etc. i hide all of it very very well. but it is BAD, very bad pain and suffering and confusion. when i got this diagnosis i was relieved and utterly terrified. i printed out your series on this and relate so much to it. i am totally confused, terrified, scared, alone with it, yet also relieved, so relieved to get help. i watched your videos and relate so much. holly thank you so much. i hope you get this. i feel very very frightened. thanks.

  2. I agree with all you said. For me, I was diagnosed roughly 20 years ago now, so it’s really hard to remember those early years and the confusion. It was also a different period of time, different approaches, even DID was called MPD. The one thing that has settled for me over the years is my confusion about DID. While I still get confused a lot, it is not nearly the way it used to be. So, I want to tell your readers that if they are in the beginning, it will get better. The key is to not freak out (which I know is very very hard). But you can’t get anywhere if you are freaking.

    1. Thanks, Paul.

      “While I still get confused a lot, it is not nearly the way it used to be.”

      I have had the same experience. And I’m not confused about the same things I once was, which makes a big difference for me.

      I want to second your observation that the key is not to freak out. I absolutely, 100%, full-tilt freaked out. Repeatedly. In hindsight I believe I made a challenging and difficult experience much more challenging and difficult than it needed to be.

  3. I know about dissociative writings. Negative messages feel so real. Yet, they are not real in a concrete sense, though they can have a concrete impact. I wish you the best.

  4. Holly,

    Thank-you so much for sharing this. You are brave and beautiful. I think you’re right – there is no substitution for seeing it for ourselves, but most people would never let us.

    (If I might make a small request. Perhaps you could type the content of the letter out as well as it’s hard to read from a photo.)

    – Natasha

    1. Hi Natasha,

      Thank you for reading and taking time to comment. Yours and others’ comments to this post gave me the courage to continue with the series. I really appreciate the support.

      I think I noticed that the content of that entry was hard to read and just sort of glazed over it. I wanted people to see the disjointed quality but obviously I was hesitant to fully commit. πŸ˜‰ But a little humility goes a long way, so here we have it:

      Transcript:
      This is so stupid. I am so embarrassed. What’s wrong with me? I hope [name of former therapist] can help me. I need help.

      don’t go nowhere
      you just came back
      from long long sleep
      don’t leave us.

      I have to stop thinking about this. I can’t concentrate. I’m confused. please stop right now because I feel all spinny and I don’t like it in my tummy.

  5. Holly- You are brave in sharing some of these intimate and personal feelings that were so strong at the beginning of your journey. I see the remarkable amount of progress you have made even in the relatively short amount of time we have known one another. I highly commend you for looking back just to see how far you really have come.

    I remember these times in my own journey so well. I did not so much struggle with denial of the diagnosis. Instead my struggle was with the insane flashbacks that were so overwhelming that I was consistently in a hyper vigilant state, an anxiety attack was always right around the corner. I remember thinking “I watched way too many horror films as a kid” and “wow I must be crazy”. Also in the beginning I was living alone and was absolutely convinced that people were breaking into my house and writing me letters at night while I was asleep. I now know that these were letters from the parts of me that hid themselves so carefully.

    A small note to everyone that is at this beginning stage. Try to remember it wont be like that forever and you are not alone.

    Dana

    1. Dana,

      Thank you, thank you. I’m either brave or naively reckless! I like brave better.

      “I highly commend you for looking back just to see how far you really have come.”

      You know, it was difficult to look back at those diaries but it really did give me some perspective on the progress we’ve made. So often what I reflect on is how achingly slow this process is. But it helped to look back and see evidence of real dramatic change. Thanks for your support and encouragement.

      The hyper-vigilance you describe … it’s so exhausting and really can make a person feel like they’ve just completely lost their marbles.

      “Also in the beginning I was living alone and was absolutely convinced that people were breaking into my house and writing me letters at night while I was asleep.”

      It’s amazing how well the dissociative process works. Well and also, what else would one think? The most logical explanation is never Dissociative Identity Disorder. Unless of course you have Dissociative Identity Disorder. πŸ˜‰

  6. Thank you for sharing this Holly. I can only begin to understand how difficult it was for you to do so.

    I still experience some of the messages and feelings you describe here. It doesn’t seem to get any less confusing. I am able to understand them and their motivations more often though.

    Take care,
    CG

    1. Hi CG,

      Thank you, truly. I chickened out initially but ultimately decided (after some internal communication) that if humanizing DID is really my goal I have to let people see what it looks like as best I can. I don’t imagine many people would think me very wise for doing it though, so I really appreciate your support.

      I’m lucky enough not to have to experience the ridicule anymore. And I don’t feel confused like I once did. It’s still confusing but in a totally different way somehow. And I think it’s because of what you said – understanding them and their motivations more.

      Thank you, CG.

  7. Hi Holly,
    I want to acknowledge the huge sacrifice you made to help those of us still struggling with the acceptance of this diagnosis. I know that you must have fought against all of your instincts just to post this. What I read moved me beyond description. It reads so similar to the way my journals are reading now. There is a part, or possibly more than one part, of my system that still tells me that going to my therapist is a mistake, even though I completely trust my therapist. I also relate to the feeling of being pulled in many different directions, not knowing who I am, and sometimes not even recognizing myself in the mirror! Your 6-16-2004 entry broke my heart more than anything. That particular alter wanted to convince you that you were doing this just to stand out, but I know you weren’t. I know that the last thing you wanted was to stand out. Not like this. We like to hide, right? When we come out of hiding, we do everything humanly possible to appear normal, to blend in, right? That is why that journal entry breaks my heart. I have at least two alters who ridicule me, and tell me that I brought this on myself. They try to ridicule my therapist. They have made it difficult at times to accept this diagnosis. They actually succeeded for many years. My therapist has known for nearly 8 years now. I only accepted it this year! That is how resistant I was. Only after journaling this past year, and watching myself switch right there on paper….in black and white, did I truly accept that I have Dissociative Identity Disorder. I finally admitted to my therapist a few weeks ago how crowded and alone I feel. Crowded and alone sounds so contradictory, but that is exactly what it feels like.
    I want to thank you once again for your incredible sacrifice here, just to allow people like me to see that these feelings of incredible chaos, and turmoil are completely normal. — Mareeya

    1. Hi Mareeya,

      Yes, this post took more courage than most. But you just made it worthwhile. Thank you.

      I think the thing to keep in mind about the alters that ridicule and try to bully you into silence is that it’s not malicious. I don’t believe it is anyway. I believe it’s ultimately protective. When my son was smaller sometimes I had to use a very stern voice with him to make him stop doing something that might hurt him. It scared him and made him feel like I was being mean. But I wasn’t. I realize that’s not quite the same thing but it’s similar enough. Our systems are there to protect us from danger and there’s no doubt in my mind that receiving a DID diagnosis is very threatening to a system. Someone, the therapist or doctor, has seen what no one was ever supposed to. And historically that meant danger.

      I chose the 6/16/04 entry because I’ve heard over and over from people with DID that they fear they are just attention seekers. Every time I hear that I wonder if there’s an alter whispering those things in their ear. It’s a very common way to get someone to shut up about DID because it’s shaming. And generally speaking, people with DID are extremely sensitive to shame.

      Crowded and alone is a very good description. In the past I’ve laughed often at the irony of having a head full of voices and feeling interminably lonely.

      It gets better though. It’s always hard. But you grow to meet the difficulty and you find resources you didn’t know you had. And it gets better.

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