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Diary of a Newly Diagnosed Dissociative Part 4: Desperation

December 13, 2010 Holly Gray

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.

[caption id="attachment_1163" align="alignleft" width="143" caption="Photo by olga.palma"]Photo by olga.palma[/caption]

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.

[caption id="attachment_1194" align="alignleft" width="264" caption="Photo by Mark Sebastian"]Photo by Mark Sebastian[/caption]

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

APA Reference
Gray, H. (2010, December 13). Diary of a Newly Diagnosed Dissociative Part 4: Desperation, HealthyPlace. Retrieved on 2019, September 23 from https://www.healthyplace.com/blogs/dissociativeliving/2010/12/diary-of-a-newly-diagnosed-dissociative-part-4-desperation



Author: Holly Gray

Kelly
says:
May, 21 2015 at 4:03 pm
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.
Jane
says:
May, 17 2015 at 7:22 pm
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.
Alice
says:
April, 3 2013 at 9:18 pm
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?
IP
says:
April, 30 2011 at 4:39 pm
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
suz
says:
March, 18 2011 at 1:26 pm
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

In reply to by Anonymous (not verified)

Holly Gray
says:
March, 23 2011 at 11:15 am
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.
suz
says:
March, 18 2011 at 3:16 am
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!

In reply to by Anonymous (not verified)

Holly Gray
says:
March, 18 2011 at 6:21 am
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/
suellen
says:
December, 18 2010 at 12:57 am
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.

In reply to by Anonymous (not verified)

Holly Gray
says:
December, 21 2010 at 2:19 pm
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.
Guthrie
says:
December, 17 2010 at 8:01 pm
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
carla
says:
December, 17 2010 at 1:33 pm
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.
Guthrie
says:
December, 17 2010 at 7:49 am
Dear

To suggest this is not the forum for me is a rather unjust statement as I was asked to make a comment - so I did. If you do not agree, then that is your right, for me to comment is what I was asked to do.

It is very noticeable that whilst apparently no-one could see any points I was making, you have clearly taken my advice and reflected on what I said.

This has resulted in an array of responses which can only be a good thing as it allows everyone to reconsider their feelings towards their difficulties and indeed if they may not be sufferring a mere short term'normal' response which can be overcome with better awareness. Clearly, Kerrie has very well responded to my comments, whereas others could even see them. So there is a difference already. Kerrie has also formed opinions that I can also not see justified, morever, a keen fear perhaps that whilst she believes I do not believe in DID, I didnt say that. The most important aspect is not to feel you have to be labelled and then accept it like a sentence over which you have no control.

Chariots comment I see as very honest and , yes I have met a wide number of people with conditions for which they should not have been 'labelled' reinforced by others with other forms of personality issues. Just be aware of what is troubling you, refuse to be labelled , although consider anything that makes you feel better - there is the empowerment or entrapment. Everyone has these difficulties to a greater or lesser extent, time can heal people in 5 mins or 60 yrs, it depends a lot on the enviroment you allow yourself to be placed in or labelled in.

Chariots views that no-one believes DID exists and becomes defensive to my being in the form - why would that be? I am here only to make a comment as I was invitied to. It is not exclusive to have difficulties in mental issues, it is a normality of human life. I am also saying , again, there are people with other fears they feel are much worse - so which is real and why is DID so difficult to accept as part of a normal fear which we all have from time to time?

Thanks for a response, its great to be open and this is a great therapy for you - not an additional 'non believer' as you have come across.

I take on board your personal comments to me with respect.
chariots
says:
December, 17 2010 at 4:44 am
Guthrie - It seems like you are saying DID isn't real - and you are wanting us all to come to that realization. But you are not out right saying this. If that is the case ..... maybe you should study more too, or even better, get to know someone with DID.

I have found that people don't really believe it, until they experience someone with it. No amount of reading, watching shows, etc, compares to actually experiencing it.

Maybe you have met someone with DID and still don't believe. In that case - I'm not sure this is the forum for you. You will just get frustrated by coming here..... in my opinion. Of course we each can do whatever we want though.

Take care.
kerri
says:
December, 17 2010 at 4:43 am
Guthrie, I disagree with you that people are all on some spectrum of "normal" and that really "mad " is just something people choose to buy into. The abuse we DID sufferers endured was not "normal" , and the resultant pain and agony of spirit we've  had to live with, is not either. I don't choose to buy into anything because I agree that my reality fits with a diagnosis of DID. I am aware of the nuances of my own experiences, and do not use the DID  "label" as a one size fits all. Nor do the many people I know with DID. A lot of whom I've dialogued with here, including Holly, who I have a lot of respect for.
Labels aren't meant to corral people and be an end point, but are a way for people to find a language for their experiences, and a spring board to further understanding.
You also imply that embracing empowerment is a choice that is clear cut and seemingly unidirectional. That all one has to do is turn away from something and grab that empowerment. But trust me when I say that living with DID isn't about black and whites but many many murky shades of grey. For examle at this stage in my life, I do feel empowered to seek out professional help for my DID, yet prior to 3 years ago, I couldn't choose this for myself because I didn't even know I had DID.
Also as an individual I do embrace the idea that I can guide my destiny to some extent, however when I switch and my alters are in the driving seat, their desires and priorities come into play, and any ability I might have to guide my actions and choices at these times are very limited.
DID is not something one can walk away from like divesting oneself of a coat. We do not choose to be this way, this was pushed on us by others who delivered realities too much to bear. As a consequence it can take years of hard work and emotional pain just to alter these circumstances. And so to all of you who contribute to Holly's blog, and the many more who read it, I want to say I admire every one of you. Because I too know what a truly hard slog this disorder is day in and day out!     
      
Guthrie
says:
December, 17 2010 at 3:15 am
Hi there

It is clearly not necessary for me to clarify anything. I have reviewed your article and suggested you should do more indepth research. It is for you to reflect on my comments as a whole on your article and your difficult experiences.

I wish you all the best
lenore
says:
December, 17 2010 at 3:01 am
"Because I didn’t, and still don’t, have any idea what points you’re trying to make. Perhaps you could be more clear."


I don't get it either...
Guthrie
says:
December, 16 2010 at 11:48 am
Thank you for your, reply to my comments.

I am clarifying , or talking to that aspects of 'labelling' or ability to be possessed are as real as you wish them to appear or not. It is a matter of choice of empowerment . Whilst I found your article most interesting and informative to how it is constructed, I stand quite well in my views. You should perhaps research more wider conditions which also 'manifest' what you claim to be in my words a 'label' given as there is no other to either precede it or assists in catorgorising an event or observation of mostly normal reactions.

What appears to be central is you -and why not - what is missing is why you let yourself be labelled and why you feel you have a valid view from very few details. A bit like the poor lady who just said she woke up drunk and heard voices or whatever. Any emotion or mind changing experience is natural or induced. Clear thinking wont make them money - but will it you?

People whom become desperate need emotional, reasonable support. If you choose to go inside yourself, you cannot blame others who try to help. But if you are not happy with your life - thats quite a different thing. Be more honest about your experiences in your relationships - you are you - its not healthy to ignore worry and stress, but it is worse, surely, to endorse some 'labelling system' that may worry other people like yourself, who may very well become more effected than you feel you have been. You are unique, but others are too and experience worse situations than you have outlined.

Thankyou - and do publish my views - it is emotionally important to all who have any experience of inadequacy, depression etc, that they can rebuild there lives where they feel they have become distressed.

I noticed that you you were very polite, but did not really address my points, why would that be?

Take good care and be emotionally responsible and accountable.

Thanks

In reply to by Anonymous (not verified)

Holly Gray
says:
December, 16 2010 at 12:08 pm
Hi Guthrie,

"I noticed that you you were very polite, but did not really address my points, why would that be?"

Because I didn't, and still don't, have any idea what points you're trying to make. Perhaps you could be more clear.
arline
says:
December, 16 2010 at 9:05 am
I am the mother of a 43 year old who recently got drunk and had a personality surface who talked about the sad situation that "she" was in. She wanted to take "her" to the hospital. She asked me who I thought she was and corrected me by saying that she was the caretaker of "her" Her husband said that she burst out in a counseling session with ""She's a slut!. She wants to have sex all the time" and another time she was someone called Katie. She has a concussion and doesn't remember the last three days. Amnesia or lost time that she has often. I wish she could talk to you. Many psychologists do not believe in DID. They say it is just a borderline personality disorder. They give her ECT for her depression.
Guthrie
says:
December, 16 2010 at 7:01 am
I have carefully read the 'diaries' of this lady who needs attention. We all need attention at some point, and to feel a level of fear is also normal. To create a fear of anything, like spiders or yourself is not unusual at all. Giving a 'label' to any normal condition only provides a reference point at a point in time. So , hard as it is to accept nothing is 'mad' other than if you make it so. So, just focus on what you enjoy, dont take drugs, give love , accept love, and reject only what mentally or physically hurts you. We are all empowered. Never feel you are alone . Stop accepting 'conditions' that are just labels, like flavours of crisps.
I care a lot take care and simple reassurance, this is your life.

In reply to by Anonymous (not verified)

Holly Gray
says:
December, 16 2010 at 7:34 am
Hi Guthrie,

I certainly do hope that my work draws attention to the very real struggle that so many people with Dissociative Identity Disorder live with.


Thanks for reading and taking the time to comment.
Paul
says:
December, 16 2010 at 2:32 am
It's amazing what we will do in desperation... how we will try to will something that is part of us away. For me, in the beginning, I was so confused and constantly in a state of panic and desperation. It took me a long time to even begin to make sense of what was going on. Looking back, I'm not sure I can even summarize what my path was.

In reply to by Anonymous (not verified)

Holly Gray
says:
December, 16 2010 at 6:56 am
Hi Paul,

It really is amazing what we'll do in desperation. I really want it to be different for other people newly diagnosed. I suppose that will take a long time. But I don't think it's impossible. I don't think it has to be this hard.
Mareeya
says:
December, 15 2010 at 5:15 pm
I do understand the desperate need to escape the diagnosis of DID. I went the psychic route as well. I was upset that my therapist would give me such a ridiculous diagnosis, so I went to a psychic hoping that I would hear something more "realistic" about myself. I feel like I'm finally accepting the diagnosis, but as you mentioned above, it can be cyclical. I still find myself unrealistically wondering some days 'if it's over yet'. Almost as if it's just a bad dream that I will wake up from.
I can also relate to the resentment of being obligated to be alive, and your 1/11/05 entry very powerfully displays just how frustrated you were then. I do believe that it was the anger that you were feeling that helped you push through that difficult time.
For me, right now, I stay alive out of spite to the people who would likely dance on my grave if I weren't alive. :) The very people who would love for certain secrets to be buried forever while exclaiming....."see, I told you she was crazy!"
Each day that I stay alive, I am proving that they failed at destroying me. And that satisfies me just a bit....even if I'm really crumbling inside.
Holly, I think that feeling angry sometimes over your diagnosis is appropriate, as long as your anger doesn't turn inward. I think the anger should be directed at whatever trauma caused this diagnosis....and you didn't cause it. As I am educating myself about DID, I am realizing that it is quite a brilliant survival mechanism that not everyone has. I am choosing to see it as a strength now.

Thank you for contributing to my education of DID.

In reply to by Anonymous (not verified)

Holly Gray
says:
December, 16 2010 at 6:39 am
Hi Mareeya,

"I was upset that my therapist would give me such a ridiculous diagnosis ...."

Ha! You remind me of me. :)

I agree with you that anger over the diagnosis is often appropriate. And your point about directing the anger to the appropriate place is an important one. I didn't do that. My anger was directed inward. When I was researching for this series, I came across a few diary entries that were a little shocking in their vitriol - towards myself and my system. I hope most people newly diagnosed with DID aren't that hard on themselves. (But I suspect that many are.)

Isn't it funny that we both went to psychics to hear something realistic?!

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