OSDD - Otherwise Specified Dissociative Disorder

[Blueberry]

OSDD - Symptom or Comorbidity? Does it even matter? No, atm it doesn't to me.

I can't access parts of the forum when I'm logged in anyway, including most of the symptoms threads. (A cache problem, to be solved sometime).

So anyway, I wrote my piece for the Book Project and have just written another piece for the podcast request. Both took me a while and neither piece is the same. Ask me my trauma story and I'll tell you something different, possibly even every time. Does that mean it's wrong? Or that I'm lying or being deceptive? No, it doesn't. It might mean different parts of me are speaking up. What it certainly means is that cptsd as I know it, so the way it affects me, is so broad, so all-encompassing that I can't get it all down in just a few pages or 3 minutes recording. I'd probably need more like 3 hours recording or maybe 30 hours, I really have no idea. Also the more I write, the more becomes clear again. The stuff has been clear before but I can't survive day-to-day with that clarity so I let it sink back, probably into some sort of dissociative part.

As an aside, I asked my inpatient T if not every patient with cptsd has some sort of dissociative disorder, since dissociating to some degree seems pretty common here on OOTS, and there were others in the inpatient program who seemed to dissociate in a far more visible way than I did but who could also be brought back or even be prevented from drifting off in ways that don't seem to work for me e.g. eating peppercorns, sticking their hands in ice-cold water or some such physical shock to the system.

My T said that patients are good at hiding it, though she didn't mean concealing deliberately. It's more that it can take the patients themselves and the therapists a long time to figure out that that is what is going on. Maybe some therapists are happy to give the diagnosis sooner than others, Idk. The first time I spoke to this T before I went inpatient last year, she asked me if I dissociated and I couldn't remember if I did or not   Once off the phone I remembered that "of course I do!! All the time!" There too, I didn't deliberately hide the information, it just wasn't present in my mind at the time, or not with those words.

20 years ago in group therapy in my first inpatient stay, I'd tell my T: "I'm going away now" but I didn't actually leave the room or even dissociate particularly far or deep because saying that I could feel it about to happen was enough to keep me from actually doing so. We hadn't learnt about dissociating per se there so I don't think I knew or understood the term then. Had my most recent inpatient T asked me if 'I go away internally', then I would probably have said "Yes" because that's another way I used to describe it. Parts of me know this phenomenon under different terminology and I can't access the different terms all at the same time so ask me a question and I may give the wrong answer or with a T I know and trust I may draw a blank and have to think for a while till images and words and concepts from different parts of me at different ages or even at different stages of healing though all adult ages start linking up again...

For me it comes full circle or almost full circle to what I wrote further up the post, cptsd is so all-consuming, so monstrous that I can't contain all my knowledge of how it affects me and how I experience it all in one place, all in one internal filing cabinet that I can pull out and read out to someone. It's filed all over the place with arrows pointing to additional information and examples and this led to the other and another source was that. And if I don't watch it, all the files and arrows and sticky notes will come flying out and all land in a huge messy pile on the floor and I can't bear to go through it again and sort but I also don't want to throw it out. It's part of me after all.

I see I switched to present tense in the middle. Going back into 'it' is OK briefly but then better get back into an Observer.

Does any of this make sense to anybody else on here? Or sound some way familiar? I don't really mean whether you know or work with IFS, though the Observer role probably originated there by name. It's more - how does this additional beast feel to you? (Cptsd is a beast, dissociative stuff feels like an additional beast to me). But I don't want to trigger anyone into going further than they can handle or tbh further than I can handle (sort of joking of course because I do have to know for myself when to stop reading or absorbing).

[Moondance]

Yeah I can really identify Blueberry.

I find it amazing that so many here have such clarity or presence of mind to write their story or to write clearly about what they are thinking, feeling and wanting to say.

I can't seem to do it.  I start and maybe for a couple of days do but then I go somewhere.  My mind my thoughts go somewhere - it all becomes disconnected thoughts. I have called it "mushy" brain but possibly dissociation does fit.

Often I'm not even aware when it happens. 

I would love to be able to write my story - for a few reasons - it's not the right time though and I accept that. 

My T said that patients are good at hiding it, though she didn't mean concealing deliberately. It's more that it can take the patients themselves and the therapists a long time to figure out that that is what is going on. Maybe some therapists are happy to give the diagnosis sooner than others, Idk. The first time I spoke to this T before I went inpatient last year, she asked me if I dissociated and I couldn't remember if I did or not   Once off the phone I remembered that "of course I do!! All the time!" There too, I didn't deliberately hide the information, it just wasn't present in my mind at the time, or not with those words.


Yeah that Blueberry - word for word.

 

[Blueberry]

Thank you Moondance, I feel very relieved   There's 'always' (or maybe almost always) at least one other mbr on here who really gets it, whatever it may be. Though I'm sorry you understand it too because only experience allows people to do that.

Blank brain, mushy brain, trauma brain - I've used them all.

[Hope67]

Hi Blueberry,
As I was reading through your post, I was thinking - 'Yes, I understand' and 'Yes, I relate' - I particularly found your description of the different filing cabinets to be very apt - things stored in so many places. 

Regarding dissociation, I noticed that you described it as a 'beast' - I wondered about my own thoughts about it.  I think I've been hugely influenced in this reply by the fact I've just finished reading the book called 'Trauma and Dissociation Informed Internal Family Systems' by Joanne Twombley.  Plus other books about dissociation before that - and whereas previously I used to think of dissociation as something I desperately wished I didn't do - now, I consider that it's been a helpful skill, and has helped me.  But, I quote Joanne, who said 'Dissociation can be thought of as a skill or an automatic defense that helps children survive difficult childhoods, but this "skill" can evolve into crippling symtpoms.  Dissociation  symptoms include amnesia for the past or events, parts having knowledge other parts do not have, numbness, depersonalization, derealization etc."

This is where it gets complicated, as I feel like I understand at some levels, and at others I really don't.  That's in relation to what you said about your T mentioning that it can take patients and therapists a long time to figure out what is going on. 

It's like something that's in a dark tunnel - you know it's there, but somehow it's hiding.

I'm feeling annoyed at myself for how this reply is developing - it doesn't make sense.  I've just noticed a typo above saying 'crippling symtpoms' - that's made part of me laugh! 

I admire the fact you've written your pieces for the Book Project and the Podcast.  I admire the fact you are able to participate in the Zoom sessions too.  I admire all of the people in OOTS who have been able to do these things.  I feel sad that I've not felt able to participate in any of those things. 

Anyway, Blueberry, I just wanted to also send you a hug        Wow, several hugs came out then.

Hope 

[Blueberry]

I admire the fact you've written your pieces for the Book Project and the Podcast.  I admire the fact you are able to participate in the Zoom sessions too.  I admire all of the people in OOTS who have been able to do these things.  I feel sad that I've not felt able to participate in any of those things. 

I was sad to read that you were annoyed at yourself for your reply, because it was well-written and made perfect sense to me! I intend to respond to the greater part of the post later. For now I just want to address the bit I quoted.

I admire things that you manage in your day-to-day life that I don't manage and believe I never will manage. You live with a partner and mostly seem supported. He's not a major trigger and problem for you the way some partners and spouses seem to be on here. As for me being in a relationship - has never happened and it's unthinkable for me. You also manage all sorts of healing steps and progress all by yourself - you don't have therapy. That is so impressive! Wow  

I do hear that you're sad about not being able to participate for the moment. Maybe that's just good self-care though? Writing my first piece did send me for a bit of a loop. It was sort of good to write it and sort of not good. I'm also going to send you a PM.

Blueberry 

[Hope67]

Thanks for what you said Blueberry     
Hope 

[Blueberry]

Regarding dissociation, I noticed that you described it as a 'beast' - I wondered about my own thoughts about it.  I think I've been hugely influenced in this reply by the fact I've just finished reading the book called 'Trauma and Dissociation Informed Internal Family Systems' by Joanne Twombley.  Plus other books about dissociation before that - and whereas previously I used to think of dissociation as something I desperately wished I didn't do - now, I consider that it's been a helpful skill, and has helped me.  But, I quote Joanne, who said 'Dissociation can be thought of as a skill or an automatic defense that helps children survive difficult childhoods, but this "skill" can evolve into crippling symptoms.  Dissociation  symptoms include amnesia for the past or events, parts having knowledge other parts do not have, numbness, depersonalization, derealization etc."

This is where it gets complicated, as I feel like I understand at some levels, and at others I really don't.  That's in relation to what you said about your T mentioning that it can take patients and therapists a long time to figure out what is going on. 

It's like something that's in a dark tunnel - you know it's there, but somehow it's hiding.

I think it's good that you questioned my use of "beast" for dissociation. I do know that my ability to dissociate has been very helpful in the past. Even the last times I saw FOO about 7-10 years ago it was a useful form of protection. I think calling cptsd a "beast" evolved here on the forum a good while ago, but hasn't been used much for a while. It doesn't need to be used again either. Maybe "burden" is more appropriate. What I was trying to get at I think was that cptsd is this one big diagnosis, illness, injury or whatever you want to say and OSDD feels like a huge additional one on top. Though as I write that, I realise OSDD is not just on top, it's also very intertwined, at least for me it is.

I like your description of OSDD, or whatever other dissociative stuff one has, of it being in a dark tunnel and we know it's there, but it's also hiding. I think that's very apt but I also don't think it contradicts what my inpatient T said, especially when she's talking about patients who maybe haven't read as much as people like you have or who haven't had the amount of experience of different types of therapy that I have. Just because I sense there's something hiding in a tunnel doesn't mean I tell my T about it immediately. I might be hesitant or I might not even have words to express what I sense. If I don't tell a T, they can't explore it with me. My inpatient T wrote in her report on my stay that she's still trying to pinpoint a more specific diagnosis than OSDD but she still doesn't grasp enough about what's going on in me to be able to narrow it down. I think that it's good that she's not being overly hasty about that. Definitely a dissociative problem, worse than anybody thought up till now, worse than she herself realised last year, but we can all wait for the actual diagnosis.

From what my inpatient T said, it sounds as if something similar goes on in her mind about her patients who are more at the beginning of their healing journey. Yes, cptsd, yes dissociates sometimes, but is it a whole dissociative problem? An additional diagnosis? Or 'just' one of many symptoms? - Maybe that's what it would be broken down into. But I don't know, just speculating. That was actually the basis of my original question for her - this thing for me which is so much part of my cptsd that I can't imagine having cptsd without all the dissociative stuff I wrote in the first post upthread plus all the dissociative stuff I didn't write, do some people have cptsd without having this dissociative stuff?? As in, does that even exist??

I hope my post makes sense. I'm interested in other people's take on it too.

[Armee]

Hey BB,

I don't know if this is helpful but the way I've understood it...dissociation is pretty much always part of CPTSD. I don't know for sure if that's true if someone only has adult onset complex trauma. But pretty much dissociation and cptsd go hand in hand.

 
Now the next level up from there is OSDD and then DID in terms of how much dissociation there is. And those are also pretty much always associated with CPTSD. You can have CPTSD without OSDD and without DID, but can't really have those without CPTSD.

And what I've read here and there is that OSDD even though it's lower on the spectrum than DID in terms of the amount of dissociation, people with OSDD tend to have more severe impairment than DID because the dissociative barriers in DID are stronger and more protective than in OSDD, meaning it's easier to separate off and have functioning parts that do day to day living with DID. I think that's from Janina Fischers book.

[Blueberry]

Wow, thank you Armee, that's very helpful and informative!

[NarcKiddo]

I'm not sure that I fully understand dissociation, but I also have formed the impression (which is probably correct) that it takes many forms. I think I do it to some degree but I see it as a coping mechanism.

Although I speak to my T about certain parts of me feeling this way or that way, I don't generally think of them as having fully separate identities. That said, I realised recently that when I am at the dentist or having a medical procedure adult me seems to go away and child me takes over. It is the only way I can remain calm and accept intrusive physical closeness, I think, because adult me cannot bear that. Child me had to tolerate that and probably dissociated. Now I think about it, it is almost as if adult me has to dissociate from child me, because child me knows how to dissociate from doctors and can then do so without interference from adult me. This is actually an important skill for me to have, because child me was perfectly capable of running, screaming, around the doctor's office when he was trying to give me a vaccination and I hadn't dissociated properly. I was aged 10 at the time, so a bit old for all that, really. I certainly can't be doing it now.

I think the therapist's comment about hiding it is correct. If one is going around trying to look like a functional adult it does not do to be obviously "not there". And as a child forced to dissociate, it also does not do to be obviously "not there" because in my case narc mother expected me to be there for her at all times. So I think we try to find a way to present ourselves that looks as if we are present, at least passably so. I do not think any of this is done consciously. I mean, for years I had no idea that what I do might be dissociation, or that others might not do it.

[CactusFlower]

I've found this to be a great starting point of reference. https://heyzine.com/flip-book/7d91ed1b1e.html#page/1  All about DID/OSDD and for people living with it or living with someone who does.

A video I watched once explained that yes, it's normally hidden from everyone because the whole point was to hide from trauma or potential trauma. You're less vulnerable if people perceive you as a single personality, so other headmates who come to the front CAN (but not always do) act in such a way that others wouldn't question them. Generally happens more when headmates knew about each other, which isn't always the case.  The above e-zine explains it better, though.

[Blueberry]

Thanks for your info CactusFlower, that helps me. I hope to watch the e-zine in a couple of days, so thanks for the link. It's good to get in-depth knowledge from experts from time to time, my intellectual part needs that sometimes. Helps with recovery. 

[Blueberry]

I've finally read the e-zine. Lots of valuable information in there. Too much to take in all in one go. It's P-DID that my inpatient T thinks I might have.

[CactusFlower]

Hence why I bookmarked it. I had to go back several times to read it all. hugs

[AphoticAtramentous]

Hope this is okay to revive from 2023 but it's just such a nice general thread about a concept I've been researching for the past month.

Once off the phone I remembered that "of course I do!! All the time!" There too, I didn't deliberately hide the information, it just wasn't present in my mind at the time, or not with those words.

The conflicts it causes...work, not work...sing, don't sing...hide don't hide

Second quote is from a different thread I found whilst searching for OSDD mentions, but to both of these I say - wow, absolutely relatable in every way.

I've found this to be a great starting point of reference. https://heyzine.com/flip-book/7d91ed1b1e.html#page/1  All about DID/OSDD and for people living with it or living with someone who does.

I appreciate that it marks certain theories as "unconfirmed". I've unfortunately found a plethora of individuals online who obey these theories to the absolute letter, even though these concepts are such complicated and highly misunderstood phenomenons (and something that a lot of medical professionals don't even believe!). It is an ever evolving science.

Now the next level up from there is OSDD and then DID in terms of how much dissociation there is. And those are also pretty much always associated with CPTSD. You can have CPTSD without OSDD and without DID, but can't really have those without CPTSD.

Expanding on this: The way I see it is (coming from someone who is definitely not a medical professional so don't quote me) that these dissociative disorders are just ways to define different segments of a dissociation spectrum. The "Average DES Scores in research" table on the bottom of this page (http://traumadissociation.com/des) provides some insight on such, though unfortunately it is rather old at this point (with its usage of DDNOS and lack of CPTSD) it is still interesting nonetheless. DID ends up being the wilder side of the dissociative spectrum because of its amnesia-heavy qualities.

But I implore the idea of a spectrum specifically because of how much the dissociation can vary even within these diagnoses. A DID individual may have difficulty remembering their afternoons - compared to another person with DID who might occasionally wake up under a different legal name in a completely different country. Of course, as Armee pointed out well though - the dissociation or lack of does not indicate the severity or impact on one's life, because those who lack dissociation unfortunately end up remembering more than they are uncomfortable with.

This is all just to say, indeed, where does the typical levels of dissociation of CPTSD stop, and where does the dissociation of OSDD start?

Regards,
Aphotic.