DID Casually dropped the did bombshell

[Sandstone]

I'm feeling very fragile over this, so please reply gently.

I had a meeting with a selection of people who are supposed to be deciding the future of my care. More details in my https://www.myptsd.com/threads/another-load-of-confusion.60810/ thread.
In the course of it I said that 16 week allocations of sessions didn't seem to work, and put pressure on me and the therapist to go too fast, and that I understood that for any sort of dissociative disorder we were talking in years not weeks.

"Oh, yes" said my Co-Ordinator, who had never met me before "Remy said if the DID is confirmed it would need 3-4 years"

No-one has EVER mentioned DID. I've assumed it doesn't fit, because I am aware of the different aspects of myself and don't lose time. I had no idea it was being considered and I'm incredibly disturbed both that it is and that it has been discussed while being kept secret.

I have no-one I can discuss this with as there is currently no support for anything but crisis in place. I know lots of you will say it's not so bad, and identifying it would enable a move ahead, but sitting here it is so, so bad. It feels like unleashing insanity, and there is nothing and no-one I can do with it.

 

[Friday]

Let's say you are not DID, just as a starting point. :) Nothing against DID, but just to look at the problem under that light for a moment.

1 - If the paperwork says you "are" so that you can get 3-4 years of uninterrupted therapy, does it matter? (Honest Q, adding this just because I realize this might read as a rhetorical Q, and it's not. I can think of a few reasons why it might matter, but they're wildly different from each other & don't just want to assume or pick one at random.)

2 - Do they even have a diagnosis for dissociative disorders outside from DID? ((Meaning, that no matter which dissociative disorder you may have / where you fall on the spectrum, it gets marked DID on the paperwork.))

2a) If so, since my understanding is that DID is the most severe form, does that change the time frame for uninterrupted therapy, or levels of care they're willing to provide? Like DID comes with ### of time, and inpatient care, & XYZ; but disorderB comes with ## of time & XY, and IOP care; and disorderC comes with # of time, & outpatient only & X. Like, are they working off a grid of benefits by disorder, or can any disorder = any level of care & time.

2b) If not, if all people on the dissociative scale are marked as DID, does that change things for you?

...Just thinking pragmatically & not sure how the NHS works in this regard.

 

[lostforgottensoul]

I 100% agree with @FridayJones first this doesnt change what you actually deal with and even if you have DID, so? Work through what you have.

Labels can do more harm than what they are labeling. Just work through what's in front of you, what you do deal with.

 

[Sandstone]

Are you saying I am wrong to be disturbed?

 

[Stickler]

I dunno if you qualify as fully DID ( only about 90% sure I do.)

However, getting that much help out of the NHS is a minor miracle

Edited to add: it's perfectly legitimate to be unsettled.
...I will tell you that I gradually came to terms with it, so it might be better to consider that it might or might not be true.

Further edited to add: it's a surreal sort of thing, but it's not the DIAGNOSIS OF DOOM either.

 

[Sandstone]

I'm not getting ANYTHING out of the NHS. Currently I have no therapy, no support other than if I'm in Crisis, which I'm determined not to be. They were recommended by their Psychologist after 32 session to refer me for external help, but are thinking about whether to provide something from another district of their Trust. This is a service their Psychologist presumably knew about and rejected, though I need to check that with her.

I'm shaken and shocked and stuck

 

[Friday]

...you saying I am wrong to be disturbed?

Nope! Not at all.

But since this is a big complicated problem? And there's a number of different ways to look at it? It seemed like the kindest way to start is by "let's just assume you are not DID, & look at it that way."

 

[Sandstone]

@FridayJones I don't think there is a formula for how much support goes with a condition, though there is one for how much funding the Trust gets according to clusters of conditions/severity. Certainly there is no question in this area of any IP treatment. Here you can only be admitted if in crisis, and that automatically stops all treatment of any kind other than meds.

In ICD 10 there is no DID diagnosis, so it technically doesn't exist - there is a choice for coding of F44.7Mixed dissociative [conversion] disorders, F44.8Other dissociative [conversion] disorders, F44.9Dissociative [conversion] disorder, unspecified

However, the chap who was being quoted is http://dissociation.co.uk/videos/ this man, a bigwig expert. T's plan was that I be referred there for treatment, but initially the NHS said they would only refer me for assessment, now they are withdrawing even that.

And does it matter? Yes, it matters mainly because I can't make it make sense. You already know I question how justifiable PTSD is for me. I really cannot believe there is remotely enough for there to be a mechanism for a major dissociative disorder. Trying to fit that idea into my life history is like trying to convince myself that my ancestry is mixed Chinese and and Egyptian when the evidence of my eyes and my documentation shows it is European Jewish, Scots and a dash of Puerto Rican. It turns my world view upside down and it deeply, deeply disturbs me

 

[Sideways]

I was terrified when I got told I had DID. For a couple of months afterwards, pretty much all I could say to my T was "I feel completely insane". Over 2 years on, one of my alters came out for about 5 minutes and spoke to my T the other day, without me knowing what I said, and I was so frightened by that concept that the T slotted me in for a follow up the next day to make sure I was okay.

So do I understand that this is a really big deal? That someone casually tossing that term at you is actually quite terrifying? Absolutely. I totally get why you would freak out about that. You're not alone feeling that way about it.

But let's deal with it, yeah? You need proper therapeutic support. That's the priority right now. Diagnosis or no, nothing about you actually changed during that meeting. That word is scary, but you are exactly the same person. You walked in determined to get yourself proper support? You keep doing exactly that.

When you have some proper support, then you go right ahead and let yourself go. Give your new T all the details you have as to why you believe the diagnosis is wrong, and clear it up then.

It is really hard to hear. Really really hard. So get back on the horse to get yourself support so you can sort it out. We're here whenever you need to freak out or get encouragement - just don't quit now because of one word in one meeting.

 

[Friday]

@Sandstone

Okay! That makes sense :) & Thanks. I'm reeeeeally not familiar with the ICD.

If Lady McNeverMetYou can't actually use DID / there's no diagnostic code for it, do you think she may have "just" misspoken? You said dissociative disorder, and then she said DID just because that's what pops to mind? Or because she doesn't understand it's not all one and the same thing? (Which is kind of a scary thought, considering she's supposed to be your care coordinator, if she doesn't even understand what diagnosis are being discussed.) But if she "just" misspoke, would have said "Yes, yes, yes, dissociative disorder, sorry!" If someone had corrected her, does that calm the anxiety? If it were a mistake? Because it seems now, like perhaps -hopefully- it might have been?

 

[Sandstone]

@Ragdoll Circus No-one is quitting. My options are fight on or die. I'm sticking with the former. (By the by, has anyone heard the Madisen Ward and the Mama Bear track Fight On ? Currently my anthem)

(also @Stickler )I've moved very slowly over the last few years from the assumption that dissociation was nothing to do with me, apart from a bit of spaciness and some derealisation that might be explained by an organic eye problem. The first time a T suggested the idea I assumed he was speaking in analogy, and we ended up staring at each other in bewilderment as I said that yes, in some ways I was like my hamster, but in others more like a fat tabby cat.

Via the Structural Dissociation theory, the Psychologist led me gently to the idea that all PTSD is by nature dissociative, that all we who suffer from this have an EP that is stuck holding the trauma and its impact. That makes sense, but it is a huge jump from there to the multiple ANPs needed for DID. And yes, the idea of any level of dissociation beyond 1 ANP, one EP makes me feel utterly crazy.

@FridayJones It is possible that it was an error. But he was in the two hour meeting that discussed me with Remy, the expert. When I worked in the NHS 've sat in those meetings on the physical healthcare side. They are usually pretty well documented, and precise in what condition they are discussing. I don't know how it works in Mental Health and especially in that Trust.

 

[Deleted member 29920]

I don't understand why they kept this secret, I wish the NHS would be upfront with patients. Sad and angry for you, I don't know what else to say.