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Diary of a Newly Diagnosed Dissociative Part 4: Desperation

It seems many people think of Dissociative Identity Disorder as the pinnacle of crazy. But  if I’ve ever truly lost my mind I did so when I was trying desperately to escape DID. It was when the confusion, fear, loneliness, and shame I felt in the aftermath of my Dissociative Identity Disorder diagnosis periodically reached critical mass that I panicked and, in fits of desperation, clung to ludicrous, even dangerous thoughts.

Photo by olga.palma
Photo by olga.palma

I Rejected My Dissociative Identity Disorder Diagnosis in Favor of Possession

A psychic told me almost immediately after diagnosis that I’d permitted “beings” to inhabit my “energetic space” and trick me into believing they belonged there. It’s a testament to my level of desperation that I even entertained such an absurd idea. But I did more than just entertain it when my capacity for rational thought collapsed under the enormous pressure of confusion and fear; I became convinced of it.

7/16/04

I have finally come to my senses. This whole thing has been a weird, strange phase to be sure, but it’s over now. It’s embarrassing to me that I allowed myself to get so caught up in this DID thing. Also that I would allow all those beings in my space. But I guess it’s a learning experience. I just have to really focus on moving the beings out …. And if I get to feeling sad or upset I need to just remind myself that it’s the beings making me feel that way. I can’t let them control me.

Photo by Mark Sebastian
Photo by Mark Sebastian

The Dissociative Identity Disorder diagnosis didn’t make me crazy; my desperation to rid myself of it did. Fortunately it wasn’t permanent, but cyclical. It never took long before I again realized with dread and disappointment that I had DID and the “beings” weren’t going anywhere.

Stuck with a Dissociative Identity Disorder Diagnosis, I Contemplated Death

Though I tried valiantly, I could never make any alternative explanation for my situation stick. Loneliness and shame mounted and I became increasingly resentful of what I saw as an obligation to stay alive.

1/11/05

I am angry that my life matters just enough to a few people to keep me from ending it. So that I have to drudge through every day feeling barely alive and wishing I weren’t.

There were times I think I kept breathing purely out of spite. I was furious that I had Dissociative Identity Disorder. And though I still feel angry sometimes, I now believe that if you’d rather be possessed or dead than have DID, you don’t know very much about DID. Most people newly diagnosed with Dissociative Identity Disorder aren’t well informed at all about it. I’m convinced that’s at least part of the reason so many struggle with intense confusion, fear, loneliness, and shame. If nothing else, I hope these excerpts from my diaries have taught somebody somewhere at least this much about DID: coming to terms with this diagnosis isn’t easy. Hang in there. It gets better.

Complete Series: Diary of a Newly Diagnosed Dissociative

26 thoughts on “Diary of a Newly Diagnosed Dissociative Part 4: Desperation”

  1. Jane, I am also newly diagnosed but have been unable to journal during the last couple of months. I was never aware of any other parts before I was diagnosed and as of this week am aware of two others. I have always kept a journal but the last few months my mind feels like mush a lot of the time. It’s like I am going through the world in super slow motion. I haven’t been able to enjoy reading either as I have a hard time keeping one sentence in my mind as I go to the next sentence. I am not sure but it could be because my two others are young children.

  2. I cannot thank you enough for sharing your experience. I was just diagnosed about a month ago, am a writer as well, and have filled an entire thick notebook full of thoughts already. Reading exerpts from your diary is the best kind of validation there is, because mine look the same. It is as if the diagnosis has just let everyone out of the bag, but “everyone” being parts I didn’t even know about. I have cut for the first time since I was thirteen, which is completely out of character for me, not to mention terrifying. I struggle with not wanting to face the thoughts and disconnecting, or facing them and driving myself “crazy”. Tonight, in my journal, I wrote:
    It’s like… when I feel something… I need to get it out right away and it helps to write… otherwise these important, strong, overwhelming feelings, urges and emotions get hidden again… into a black hole that I can’t remember how to access until they surface again. If I could video myself every time I’m in a state like that… it would make everything known… and valid. I want to access those feelings in therapy… Because they are dangerous and otherwise go unnoticed and inaccessible until they overpower me unexpectedly again.
    Again, thank you for sharing your experience. It helps tremendously to know that I am not alone, and that I will be okay. Knowledge is power–and I keep repeating that to myself over and over.

  3. Holly Gray wrote: “EMDR is one therapeutic approach that, while clearly beneficial to a great many people, must be used very cautiously in treatment for dissociative disorders. I’m not sure a lot of therapists realize that. I hope yours does.”

    Hi Holly, please could you write more about EMDR needing caution for people with dissociative disorders? Or please could you post a link if you have already done so?

  4. This is where I’m at now…. Feeling like this DID is some weird phase and that I’ve allowed myself to get caught up in it… But I also know that I’ve felt this way before and the evidence just continues to smack me in the face. I am ashamed, alone, embarrassed with this whole DID thing… Right now it doesn’t feel real. Right now I just see myself as a big liar and yet deep inside there’s fear, panic, and deep sadness because if I don’t have DID then what the hell is wrong with me? There is something very very wrong with me….. Acceptance is so hard and it comes and goes…
    Desperation… Is there..to escape… Not only DID but so many things… Everything… Just following this thought and I can already feel the chaos and confusion starting….
    This is where I’m at…
    Thanks for sharing…
    IP

  5. Holly-
    I know that the pain I have indured so far since being diagnosed is probably a huge part of why I am so afraid of moving ahead. And the more parts that surface and the more pain I feel the more I run the other direction. My friend continues to encurage me that I have nothing to lose by forging ahead but I don’t see it that way – I lose alot evertime I agree to allow a part to talk or do an EMDR session in therapy. I lose who I am and I gain alot of pain that I do not remember!
    Suz

    1. Hi suz,

      I understand. The couple of years after diagnosis were extremely painful for me too. In hindsight, I’m not convinced they needed to be quite that intolerable. I needed a therapist who knew how to handle traumatic, dissociative material and a support system that didn’t feed into the mythology surrounding Dissociative Identity Disorder. I had neither and I suspect that’s true for a great many people.

      “I lose who I am and I gain alot of pain that I do not remember!”

      I think most people would say that’s par for the course with DID therapy. And there’s some truth to that. But I personally feel that if a therapeutic approach is creating only more and more suffering, and little to no progress – and by progress I mean the patient genuinely feels they are gaining something from the therapy, actively benefiting from it – it’s worth questioning whether that approach is the right one. There’s no reason to suffer years and years on end as a direct result of therapy when you’re not getting anything from it.

      EMDR is one therapeutic approach that, while clearly beneficial to a great many people, must be used very cautiously in treatment for dissociative disorders. I’m not sure a lot of therapists realize that. I hope yours does.

  6. I am just reading these entries for the first time. My therapist encouraged met start doing a little more research to help me deal with the diagnosis of DID. I figured that “newly diagnosed” was a good place to start. But – I am a little taken back by some comments.
    I was diagnosed with DID in Oct 2009. I am still in the acceptance phase. I feel that is because I have had “parts” flying out at me left and right for a year and a half. And it is scary and overwhelming. I have a great therapist who is more patient than I deserve. I decided to really listen to her encouragment that I do a little hunting for information on my own. She has provided me with several other resources but the point is she gave them to me so it wasn’t my idea. The other night I decided to go forward and found this blog. I read through some of it in the middle of the night simply hoping to get back t sleep but instead it sucked me in. That is a good thing right now. I have been coping and coping day after day with the effects of DID – with multiple parts coming and going. I have been in “fight and flight” mode for a long time.
    But now that I started reading I am scared to move forward. DID isn’t going away and I am having a really hard time facing that!

    1. Hi suz,

      I understand your fear. And I further understand why researching Dissociative Identity Disorder has incited that fear of moving forward. But I respect your therapist’s suggestion to seek out information on your own. From your comment it sounds like she values psychoeducation and that’s great – learning about DID, what it is and what it isn’t, will help assuage your fears. Maybe not right this second. In fact, it may take some time for you to process all you’re learning and come to some peace for yourself about your diagnosis. Still, that peace is possible.

      No, DID isn’t going away … right now. But in time, you may discover that that’s not as frightening as it is now. What is most frightening to you about moving forward? I suspect if you can identify that, it would be helpful.

      Have you read my article on Making Peace with a Dissociative Identity Disorder Diagnosis? You may find it reassuring: http://www.healthyplace.com/blogs/dissociativeliving/2010/12/making-peace-with-a-dissociative-identity-disorder-diagnosis/

  7. Dear Holly,
    I truly appreciate you writing this blog.
    Sometimes or mostly i feel so alone with this as as what occurs to me, is my behaviour is very severely affected and often i cant change it, but just need to wait for a part to change so i can feel better or not better whatever the case maybe, i dont seem to be able to control, who is here or when they are here and just wake each day to see how things are and hence how the body is. I hope i am explaining it ok?

    Sometimes seeing an individual will cause a change but if i see noone, i wait till my parts are ready themselves. It is very hard.

    Like i have just spent almost 7 days mostly sleeping day and night, as it was felt inside the younger one needed that sleep, but thank goodness, i grasped a quick conversation with one slightly older who told me this and i told her there was no need for that one to sleep so much, even if she was so worried about something. I also soothed her. But it took 7 days to stop the sleeping, and now she is coming back and forth with another older one. I cant tell you all that is occurring to cause the fear etc, but where do I start?

    I feel so out of control.

    Did you ever feel like this?

    Thank you for listening and reading.

    1. Hi suellen,

      “I feel so out of control.

      Did you ever feel like this?”

      Yes, yes, yes. Honestly, I still do sometimes. Many times. And I absolutely understand your explanation. Sometimes I feel like a puppet.

      The only way I’ve found to ease the out of control feeling is to work on increasing internal awareness/communication. It’s easier said than done, I know. Still, I’ve found journalling and art particularly helpful. The more in touch I am with my system, the less tossed about I feel. It’s not a miracle cure … but it helps.

      Thank you for reading, suellen. I hope to hear from you again.

  8. Dear Carla what may not help you, may help others. It is not for you to judge.
    There may be many who have found a profound benefit from reviewing their difficulties on their road to recovery. I wish you a good one and would never challenge any of your feelings but to remind you there is a good world out there to which you belong and to always give hope . To be aware others canbe and are worse off, doesnt mean you have to.

    I am very pleased the interest you have expressed to my comments which can only be a good thing. Please try to be see their are positive aspects to comments, why you should not understand this would show very negative thoughts to any views other than a spiral of hopelessness. But there is hope and I wish you can see this at some stage.

    Thank you

  9. Guthrie- DID is a recognized mental disorder, not a normal fear and no,all people do not experience it from time to time. Only people who actually have DID experience it. Hopefully you are aware that 97% of people diagnosed with DID have endured extreme forms of sexual, physical, emotional, and mental abuse as a child. This is very far from normal and certainly not something most,let alone all, people experience. Also I do not believe you are providing any form of great therapy to anyone. Just mho.

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