Dissociation Diagnosis Issues Etc

[Helliepig]

As a doctor I can wholeheartedly say that the diagnosis of mental illness is far from an exact science. If you suffer from dissociation of any sort, and/or have done your own therapy, then you have a deep inbuilt understanding of human pain and the human psyche, and you can sit with and listen to someone and let them evolve, let the diagnosis evolve, to the extent that a diagnosis helps that much anyway. If you haven't - you learn text book definitions of things which to my mind are often applied without real feeling or understanding for the subject - for a lot of well meaning but relatively "ignorant" or should I say, "unenlightened" physicians, diagnosis is black and white thing, applied to a vast array of human pain without really understanding it. Perhaps they are the lucky ones, not needing that to have trawled through their own pain to understanding, or perhaps they are not...

To me the label isn't important other than, for instance, a therapist might have different things in mind with someone with multiples than someone without...but the diagnosis kind of evolves and deepens as you work together. So often people diagnosed as "depressed" for instance, when you work with them, show all sorts of pain and fear and anxiety and unamed feelings that are lumped together into a feeling of depression, until you start to open their sensitivity to their own feelings. They become aware of feeling envy, regret, fear, pain, hurt.... and so on. So how is the "depression" label valid?? It just means they are hurting and there are 10000 ways a human can be hurt, many ways their "depression" has a function or an origin or a meaning. Same with DDNOS etc.....its just a way to try and describe the way your dissociation is constructed, but in some ways, so what? The true extent of your dissociation will become clear as you work through it...and then when it starts to heal, it stops mattering so much. Labelling helps the professionals sometimes but I'm not sure it really always helps the patient....

Dissociation IS a very hard thing to understand, even if you have experienced it, and i guess some therapists and physicians wouldn't be able to tell the difference between dissociation and forgetting/being muddled, if it hit them in the face.... if they did understand it they would appreciate that it is a lot more subtle than that and would hesitate before making such outlandish statements about you!

 

[Girl3]

So well put Helliepig - I never knew that I dissociated until it was revealed to me in the therapy work on recalling events in my life, where I had to get very detailed about what was happening, who I was with, how I was (acting, feeling, thinking).

The diagnosis/revelation helped my therapist help me - by showing me that one facet of me was stronger and wiser and more resourceful than the other two. And that the bad stuff happened when I dissociated into one of the other two.

Doctors need diagnoses to make care plans as well as to submit claims to be paid. What really matters to the patient is the therapy.

 

[Deleted member 1860]

No, no care plan (it was stated on discharge papers), and no billing requirements (insurance wasn't used). AND these fools refused to follow up with my therapist!! So what was the point of this bombshell diagnosis?!?

 

[Helliepig]

Sometimes I think it is the way people label us - like from a great height or distance, almost in a dimmissive judgemental way, that hurts as much as the diagnosis itself. If someone sits there in your pain with you and gently tells you what they see, that is different from a pronouncement from someone on high.

I remember years and years ago someone dismissing me with "you're very anxious". I felt like getting hold of him and saying "buddy! if you had to deal with all this s**t, YOU'D be anxious". It was the dismissive, uncomprehending self satisfied way he said it - and the fact that it dismissed my life and my stuggle and my intense strength in a mere sentence. He had barely talked to me.

The thing is, he was right and he wasn't at the same time. The piece that was missing was the understanding of WHY I was anxious - the serious abuse and dysfunction i had survived, and the fact I had a damn right to be that way!! Besides which, he completely missed the dissociation and all other things going on..... how crap was he. Yes, he was useless, didn't help me at all, and probably served out his career patronising and misunderstanding countless other people. I rejected his judgements and kept moving until I found someone who could help me understand all the ways in which my strength and creative mind helped me survive my childhood nightmare. But I still feel angry about it, even now, because it triggers my hurt and indignation at all the other times people have judged and criticised and put me down, instead of respecting me and caring. And because he was so self satisified in his own ignorant little world of "expertise".

What is it about your diagnosis that is making you feel so mad?? The way it was done, the impersonal or uncaring nature of it's delivery, or that it just feels plain wrong? Is it because you feel so much more than a diagnosis? Is it that they are not doing anything about it, or not understanding what they themselves are telling you?? That the diagnosis itself scares you in some way?? ................Getting angry at the appropriate part of it might help.....

To me, those little letters DDNOS are like military medals - they describe someone who has struggled and fought against unspeakable pain in the past and did what they had to survive. It is a description and an acknowledgement that something hurt too much to bear - dissociation always does - it is not a judgement of your worth. I read somewhere that "dissociation is not an illness, it is just an obsolete survival tool" and it means you are a big league survivor, it should evoke compassion and someone knuckling down to help you because it is curable.....

I don't know if this will help but I got a book from the sidran foundation - on line, you can find it on google - that was about others' experience of being diagnosed and treated for MPD - (I know it's not the same as DDNOS, but I'm not multiple either, yet some of what is in there really helped me, not the least because it shows how other people struggle with it all)

Keep talking about it until you get your head round it. This is YOUR life and you have a right to accept or reject labels, and other's way of seeing you, if it feels wrong.

Sorry I've gone on and on, hope some of it helps.XX

 

[Deleted member 1860]

I'm irritated because....

I was told that they didn't see a dissociative disorder in me (REPEATEDLY)

I believe they are using non-dissociative incidences to give me this label (a misunderstanding and sleep issues!)

It was given to me in the MAIL one month after the end of treatment and they refuse to follow up with my therapist even though I was told that they would within a week of discharge (it's been almost 2 months and my T got the same generic follow up papers I did).

HOW can I have DDNOS when my dissociative episodes have both (yes, there were two of them), were both in the wake of digging into the sexual trauma. That's like saying someone with two stomach aches has IBS. I call foul.

AND I have had a number of other doctors say I don't have it.

Like I say, if you're looking for a specific symptom, you're going to find it. These people TOLD me they look for these symptoms. I was "crazy" even before "hello"... You can't win when they're looking for you to have a dissociative disorder.

Case in point. One question on the test said "how often do you feel like a different person in different situations?" I gave a high percentage, BUT because I wear different roles. In my family I'm carefree and fun, at school I'm studious, at work I'm professional. It has NOTHING to do with dissociating. It's how I set up my boundaries to keep things in place (which, I've been told is more of a guy trait, but as a female it's a dissociative trait *rolls eyes*.) See how the test is flawed?!? In sum, it's a control trait, not a switching trait!!!! Aarrgghh.....

 

[Deleted member 1860]

Add... I know I dissociate, I just don't see it as beyond the level of PTSD dissociation.

 

[Helliepig]

Yes- those dissociative trait questionnaires are a bit daft really, pretty meaningless and so vague and wishy washy, patients cheat on them all the time and/or can't really answer the questions. How they call them scientific beats me!! and I don't see how they claim to be able to diagnose someone from a questionnaire, it's so much more subtle than that.

Besides which dissociative people often hide it very well - even to themselves. I bet I couldn't answer one of those things properly now - not even knowing what I know now, after years of working on my dissociation, I still struggle to know when it's happening sometimes, it's just so darn familiar.....

So yes, I understand your frustration! The grounds for the diagnosis are sounding a big flaky.

I guess tho, if you dissociate at all, it is a "dissociative disorder" of some sort. NOS just means not otherwise specified - like it's not clearly dissociation with fugue or amnesia or DID - just a non descript label for someone who dissociates in some way or other althought how they pupport to know that from what you describe of your "assessment", beats me. Like I said, until someone sits down with you and works through your dissociation, how can they possibly know what variety you have or how extensive it is ??? All sounding a bit weird!

Maybe it's like a grading system, if you score a certain percentage, congratulations, you've been awarded a DDNOS grade - lucky you!
:mad:
What rubbish

To be honest tho, I'd try and put it behind you and find someone to help you heal what is driving your dissociation. That is what really matters, not what debris you accumulate on the way X

 

[Girl3]

Helliepig - so right again - dissociation is in a sense a badge of courage, and it is a primitive defense mechanism. It allows one to survive - or die - "spaced out" when the going is really unbearable.

ScaredofLonely I have had previous bad experiences with psychiatrists and psychologists. I have also had errant diagnoses. Learning as much as you can about your PTSD from reputable sources is crucial. There a a number of great books posted on this site.

Not every one with PTSD dissociates. Numbing isn't dissociation for instance. The inability to remember specific details or any details about your trauma, is. For people with multiple traumas starting early in life and extending over years or decades are the ones most likely to have DID. Yet not every one of those people get DID either.

And I agree that controlling how you are in different situations is NOT dissociation, but a form of self-control. The questionnaires are often developed and verified/vetted in In-Patient, University settings: that is a wholly different patient population than most of us.

If a tool (questionnaire) is developed in a setting where most of the respondents are often psychotic, with multiple comorbid problems - then the tool is useful for those kinds of patients, but not for people who are not similar to those patients.

Dissociation isn't a defamation, but it does require some additional therapeutic work, beyond just the PTSD.
I hope you can find a really good, kind, understanding therapist/psychiatrist with whom to work.
All the best.

 

[Deleted member 1860]

It's false to say that if you dissociate at all then you have a dissociative disorder. Many people have the experience of dissociating while driving, but that doesn't mean they have a dissociative disorder.

 

[Deleted member 1860]

And actually, I'd like for Anthony to weigh in on the "not everyone with PTSD dissociates" line. It was my understanding that everyone with PTSD DOES dissociate in that a flashback is dissociation from the present that requires grounding. It is a spectrum, of sorts (I think) and if you dissociate beyond what a person with PTSD does, then you have DDNOS or DID.

ETA b/c if a flashback isn't a type of dissociation, what they taught us in the hospital differed... If so, there really is no point in continuing this discussion as now it's a matter of semantics.

 

[silver_turquoise]

From my understanding, even "zoning out" a little like in a daydream is dissociation, and that it's not bad in itself, there is a threshold where it becomes a disorder...

My experience is that it's very very hard to even define a dissociative experience vs. a flashback vs. any other mental health 'episode', and after a long time of trying to understand, I almost give up as to what label it gets given. I've decided I don't care what it gets called or tagged with, it's just something crap that happens and that needs treating... whether my experiences are of dissociation or depersonalisation or flashbacks, I'm not sure I need to call it something specific in order to work on the issues and try to treat them. Hope that makes sense!

 

[Deleted member 1860]

TY, unhalfbricking (unusual name if I must say so...curious, what does it mean?)

I get TOO hung up on labels, I know this. It's been like this forever and a day now.

I think I would be better settled if it wasn't "hit and run" diagnosing. Telling someone they have a dissociative disorder via mail (one month after treatment) is highly inappropriate. Unethical even?

Then again, psychiatry is the only medical profession I know of where your diagnosis is routinely hidden from you. If I had cancer and wasn't told about it, I could have your license stripped away. Not so in psychiatry.