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shaken by diagnosis discussion

C catsmeowMember
Hi, Everyone! I'm sorry to come in and first thing need a place to hash out some worries. AG assures me that you all are a good place to turn to, so here I am...

I have been in therapy off and on for 21 years, dealing with child sexual abuse. My current therapist is the one that I started with, however I have worked with others, as I have moved around the country or tried out other therapy modalities. We have worked together for something like a total of 9, maybe 10 years now, in a few chunks. I last started working with her again a couple of years ago, when I moved back within a couple of hours of where she worked. I had taken the previous 6 years off from therapy, while my daughter was young, so I could concentrate on her.

When I started to work with her, dissociative parts began to emerge more clearly and especially show themselves to her more than they have every before. I came back with her thinking of me as having a diagnosis of C-PTSD. Several months after that she started talking about complex dissociative disorders and she ask for me to purchase and read some of the chapters in "Coping with Trauma-Related Dissociation." Eventually she broached changing my diagnosis to DDNOS, but she assured me that I didn't have DID.

Backtrack 21 years, soon after I started working with my T, things just blew up. I was completely and utterly overwhelmed with both PTSD and dissociative symptoms. I knew that I needed intensive, specialist help to teach me the tools that I needed to manage things well enough that I could bear to stay alive. I found an in patient program in DC that worked with PTSD and Dissociative patients. Ever since then, I have been aware that I belong somewhere on the dissociative spectrum, but I always have been able to reassure myself that "at least I don't have DID." Well, I've been aware of it other than the periods when I went through complete denial and managed to shut everything down.

Somehow, "At least I don't have DID" became a big deal to me. It meant that while what happened bad, it wasn't bad enough to cause that much damage. I'll admit that I probably also was influenced by wanting to have nothing to do with multiplicity as shown in the movies. It meant that at least I wasn't in that group of people who were injured the worst.

Well, my T has brought up Coping with Trauma-Related Dissociation again and suggested that we work through it chapter by chapter this time. It's a good idea, although I'm having mixed reactions. Today we were talking about the book and she said something along the lines of, "Even though the language is written aimed at DID, pretty much all of the material will apply to you. (Something about how developed my parts are.) Another person might diagnose you with DID. Actually, really, maybe you do just have DID."

I was shocked by what I heard and just sat there, trying to process the whole conversation. She didn't say anymore about it and I wasn't in a state to ask about it. Frankly, I'm kind of scared to ask.

Intellectually, I know that the damage was done decades ago and the dissociative disorder was established long ago, it's just that I have only now developed enough trust to share what is going on. The label doesn't make any difference to what I need to do, so trying to hide the signs may have kept the label a less scary one, but that doesn't make what happened any less scary. On the other hand, sharing what is going on provides information that can help me actually do what I need to do. So it is a good thing that I am being more open and honest about what I'm experiencing, right?

I'm trying to figure out what I'm feeling- dazed, sad. I'm not sure what else. Inside I hear, "I don't want that. I don't want for it to be that bad." Somewhere in there, I'm scared, because I'm trembling just a bit, but I don't actually feel it.

Some part of me has thought that I was this dissociative for a long time, and always wanted for my T to notice what I do that hints of it. But I've always thought of it as being untrustworthy and attention seeking. Maybe there was a legitimate reason that I needed for my T to understand just what I have been experiencing.

I can't really talk about this with my husband. He is supportive over all, but certain topics make him queasy and this is one. I have a circle of friends that has been together for about 3 years on line and they know an awful lot about what happened to me and what dealing with it is like, but at the moment I don't feel up to telling them about this. There will be too much education involved, when I'm feeling a bit in shock.

So, I'm here, asking for a supportive ear and maybe if someone else has dealt with the same adjustment.

Obviously, this is not the end of the world. She hasn't even definitely changed the diagnosis, but she made sure that the door is wide open and she is well aware of my fears of being labeled with DID, so she would introduce a change in just this way. At least based on how she repeated introduced the DDNOS idea before she technically changed the diagnosis.

I've dealt with much worse things. Even in the last week, I've dealt with much, much worse things, but this has me shaken. I guess because it affects my self identity.
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N ninnaMember
Hi Cat's Meow

I am sorry that you are in a bad place right now, dealing with DID dilemma and diagnosis.

I am also dissociative. But my T explained that there are more stages of being dissociative. The worst stage is multiple personality.

I wanted you to know that you are heard. I hear you, and I can read about your fear.
I would like to let you know, that at this moment you are still the person you are. With DID or without it. It just how things are at this time. Really horrible stuff happened to you. Stuff that shouldn't happen. You should acknowledge that and I acknowledge that for you too. It makes a lot of sense that you developed dissociative disorder, to cope all that stuff. As you said, to survive.

Your diagnosis doesn't define who you are. It just defines, that you have some problem, that you are so bravely solving. You said you trust more, that means you are also more open and it also means you want to get better and that you are dealing with the matter. That is all that it means. It doesn't change of who you are.

Go slowly, do not put pressure on you. Trust your T and cuddle yourself when it is dark around you.

Looking forward to read about how you are doing!

pathwewalkpathwewalkMember
Hi, Cat's Meow and welcome.

I definitely hear you and have some understanding of how you're feeling.

My T doesn't like labels as he thinks that we are too complex to be slapped with one diagnosis -- that we're bits and pieces of all sorts of diagnoses. That said, he has recently told me that he has never met/worked with someone with such an awful childhood. I had another T tell me something similar, but that T had only been in practice for a decade so I passed it off, but my current T has been at this for a while, so I have really reacted to what he said. I mean, I know I had a few hurdles but my childhood wasn't THAT bad -- I survived afterall.

For me, I find myself thinking that I wish he would just label me as then, that would give me something tangible to overcome -- never mind that he would be the first to tell me that's not the way he thinks the healing process works (and I do agree with him on that -- although begrudingly).

His statement about my childhood makes me feel forever tainted, and that doesn't sit well. Like you said -- "I don't want that. I don't want for it to be that bad." I totally get that! And yet, if I'm honest with myself, I guess I'm not surprised.

I don't have any advice, per se. I just wanted to let you know that I get it and you definitely have support here.
chickadee3chickadee3Member
Hi Cat -

I've been through a similar experience - I was told that I dissociated, then that I had DD-NOS. I also always told myself "at least I don't have DID". It felt like I could handle the diagnosis, knowing that at least I could always know that at least it wasn't that bad.

I found out about the DID diagnosis while I was in a hospital. One of the doctors referred to it in passing, and I flipped out. No one had told me that the diagnosis had been changed to that.

My T tells me that my parts are very well developed, too. I spent a long time telling myself that she had decided to take back the diagnosis and forgotten to tell me (it could happen, right???), but recently the subject came up and she told me again that she is quite sure the diagnosis fits. I've been slowly getting used to the idea, but it's very hard.

Someone at the hospital told me once that it's so common for people to think that they DON'T have DID, she thinks it should be added as a symptoms to the DSM (the last part was a joke). That helped me a bit.

I think it probably wasn't a great way for your T to handle that discussion, so it makes sense that it would be even more upsetting. It might have been more helpful if she had talked to you about it on purpose, rather than tacking it on as an afterthought. Maybe you could talk to her a little bit more about what was hard for you about that, and what is hard about the diagnosis itself. Hopefully, she will answer your questions and give you lots of time to get used to the idea.

Also - that's a great book that mentioned. My T suggested that I get it, too, and I find it really helpful and also comforting.
MallardMallardMember
Hiya Cat's Meow,

I'm sorry things are tough. I can't imagine where I would be in your position. Probably under my duvet feeling thoroughly Confused and

I think what's so hard about mental health diagnoses in general is that it is virtually impossible to set up a set of rules or guidelines to categorise the human condition. Unhelpfully we don't fit into neat boxes. Professionals have created an imperfect framework to categorise disorders - having a framework helps with treatment but there will never be a framework good enough to conceptualise human experience and encompass the broad range of symptoms and experiences that people who dissociate go though. It doesn't help that professional folk also disagree on how to apply the guidelines.

Which is no fun at all for people on the receiving end, worrying about what the implications for them are. On one hand diagnoses are useful and can give people a sense of being validated but I hear you on how the possibility of being placed in one category over another can raise lots of fear, worry and confusion.

I don't know if it helps, but I am not sure the various categories should be considered an order of severity or 'badness'. People respond in different ways to similar circumstances. What will cause the symptoms of DID in one person, may not in another.

quote:
I guess because it affects my self identity.


This really resonates for me. I think this is the absolute worst thing for people dealing with trauma. Often they had their sense of identity shaped and dominated by others. I know that if I feel I am losing my grip on the reality I have tried to construct for myself in there here and now, it utterly freaks me out and sends me back to a very unhappy and unpleasant place.

quote:
but at the moment I don't feel up to telling them about this. There will be too much education involved, when I'm feeling a bit in shock.


I wonder whether you need some time to sit with this before you make a decision either way on whether DID fits for you and whether you want to share with people in your life. Can you share with your T how much this has shaken you up?

Hug two
pinglespinglesMember
Hi Cat's Meow Hi

Can resonate with your post so well. My T does not diagnose at all, its not her job. But DID is what we are working with in therapy. I don't have a formal dx of DID, its not my T's job to do that, she just happened to recognise early on some of the signs (she told me this a couple of years later, when I was bold enough to ask when she knew I had parts) and suggested I read a particular book, and I was like WTH she is crazy and very slowly things just kind of starting making sense. It was all very gradual from there and still has to be gradual and slow so I am not surprised you feel a bit shaken that the possibilities were kind of raised in the way your T chose to do it. Yes, I can still be shaken when a new part or a part I was not aware of emerges and then T and I spend some dealing with the after effects of this. Also T titrates what she feels I can cope with, so she might just say 'oh a little one was here' but not what they talk about. Little information has helped just so I am aware whose been out and about. That said it has taken nearly 3 years for T and me to reach the point where she does this sharing and its not something to be rushed into.

As for denial, yep we still go through this sometimes, and 'acceptance' comes and goes but we work with it as we can, some days more successfully than others. T has spent a long time building up the trust, therapeutic relationship etc and we still work on it as dissociation wherever you sit with it is complicated stuff. We talk about not only the 'technical' stuff to do with DID but also the whole gamut of feelings that come with dissociation. T and I also talk a lot about language around dissociation (language/labels are important to me because of some negative experiences) so we have kind of built a language around my DID that works for me. Its not easy work therapy wise, but as you sound like your T is willing to work with your experiences.

There are times when you think I can not do this in talking to T, so those days we have found through lots of trial and error, that writing stuff down helps, my T must have 1000's of post it notes with single words on them Roll Eyes, other times I have printed off what I have written here to start a conversation with T. Can you let T know how this is making you feel and take that as the starting point rather than a label.

Anyway enough rambling, just wanted to let you know that there are people around who get where your post was coming from.

Pingles
Attachment GirlAttachment GirlAdmin
(((CM))) So glad you came here for support! I think I would be reeling also, but please remember(what many have said before me) that a diagnosis is just a label that is an attempt to classify and identify so you have a treatment direction. But that does not change who you are or what you have experienced. Everything is the same as the moment before your T mentioned DID. And I understand the fear but

1) You have already survived whatever happened, so although it can feel like owning that will destroy you, it will not (Although I don't want to minimize how painful it can be to truly accept that what happened to us happened to us.

2) When all of this happened to you, you were so very alone, which is no longer true. You have Mama Bear, and your husband and daughter, your friends and your online community. You can reach out for help and can.

3) You have faced your healing with a tremendous amount of courage and grace and already done so much work and that is still all a part of you.

much love,
AG
C catsmeowMember
Thank you, everyone for your supportive answers! It helps a great deal to know that other people understand what I am saying. Just knowing that I am heard and understood makes such a difference.

Really, a lot of the things that I have been sharing experience wise with my T lately have been suggestive of DID. I know full well what the diagnostic criteria are. My T knows that I know. She also knows how much I don't like the idea and how badly I react when I feel pressured to talk about things that feel that threatening to me. The way that I deal with things is to take them off, chew on them for awhile, do a lot of writing to try to pull up feelings and reactions that I'm not aware of and then process things. Then when I feel a bit less overwhelmed, I can go back and talk to her. Not ideal- it drives her a bit crazy, but it's the way that I work- or at least some of me works.

I feel a bit better today. I seem to be absorbing at a deeper level the understanding that the label doesn't change who I am at all. I sense a shift in my T understanding just how much I need to get a handle on my internal world and how I need to learn how to work better with my parts, but that is coming from what I have shared with her, not the diagnosis.

I don't know if I will actually be able to do this, but if I can, I think that it would be useful to tell her that I was surprised to hear her say that the DID diagnosis was even a possibility for me. We are going to talk about the first chapter of the book in our session tomorrow, so I hope that I can keep myself from being silenced and actually talk about all sorts of things that are related.
C catsmeowMember
I just realized a large part of what upsets me so much about this is that at the moment it makes me feel alone and isolated. We moved back here a year ago and I have started over again with a new set of friends, so I haven't told any of my RL friends here about the abuse, never mind the dissociation. There are a couple of people that I have been considering starting to test out in terms of the abuse. But I fear that anyone in real life who I told about the DID would see all of the stereotypes and movie images and not me. I fear being shunned.

It is so lonely making to believe that I have to hide so much of my experience from everyone I interact with. Really, that's just a continuation of my childhood, isn't it? Having to hide who I am and what I am experiencing.
chickadee3chickadee3Member
I hope that you can tell your T how hard it was to hear about the diagnosis. I think it would be a really smart thing to do.

The loneliness is really, really hard. I struggle with it all the time. You are absolutely right to be very careful about who you tell. I had a couple difficult experiences (though nothing absolutely careful). Except for people I know through prior hospitalizations, the only people who really know are my partner and my T, plus a couple of my partner's friends (who are social workers... she needed and deserved support, and they've been great).

There's an online forum named Pandora's Aquarium specifically for survivors of sexual abuse, and it has a section for people with DID. It is a really safe (and password protected) space, and that's the thing that has helped me the most. It helps to be able to go there and talk about the things I don't understand and struggle with. People there understand.

Like you, I also write a lot.

It sounds like you're facing this with a lot of courage. Don't forget to be patient with yourself (and even more so with your parts)... it takes time, and there are bound to be times when you feel like you're moving backwards not forwards. That's ok, too.

Take care!

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