Other Ddnos folks - do you feel misunderstood?

[chant2012]

For those of us with DDNOS - do you feel misunderstood? There is so much literature on PTS...

Wow you are so not alone. I don't have any diagnosis yet as far as my dissociative issues go but I very much relate to the DDNOS diagnosis. I am being evaluated in October. But yes I feel the EXACT same way. I will describe how it is for me and my feelings related to this all.

I think I have the type of DID/DDNOS (T and psych won't diagnose me so I quit her and find a psych) where I do not have complete alters but they influence me all the time and rather I have amnesia to their influence of me. I also do switch but I'm always present and they're not really "full". Also, I have no idea where they go when I don't sense them around. And I can't communicate with them, though they can with me and do so semi-regularly.

Mine seem to blend with me/I don't know what you'd call me/I think of myself as a shell. Anyway, they blend with me and they make up who I am to the outside world.

But being "like this" makes my experience feel less real and less important though (as opposed to DID).

And since I am always "me" I don't think IRL people really believe me cuz if I'm aware then why can't I stop the things "I" do?

But when I say, "It's not really me. Not fully." ... they just say, "So who was it then?"

"Well, me I guess..."

"Then why can't you stop it? Why do you do things and then claim it's not you?"...

"Because it's not really 'me'. When they are there they influence me and blend with me and then I'm 'them'..."

I guess I feel like if I had complete alters then both myself and other people would maybe believe me and my experiences more. I think I would be more able to believe it.

It just seem difficult for me or I guess anyone with DDNOS because it's not DID, and everyone (public and otherwise) knows DID but not usually DDNOS and with all the DID awareness and all the hashtags and everyone saying DID all the time it gets extremely upsetting since that's what people will be expecting. It only cements further that I'm not valid.

In a way I feel fortunate because I am more whole, in a sense, but at the same time I don't really feel any more whole, just more aware maybe? And I guess that's a good thing. At least everyone who has full-blown alters tells me it is anyway. But it just feels so invalidating to me to be "not quite" single nor not adequately multiple either.

 

[chant2012]

For those of us with DDNOS - do you feel misunderstood? There is so much literature on PTS...

This is how dissociation is for me. I have DDNOS - DID-type and I am like a shell where my others act through me/shell and depending who is present that is who "I" am. It could even be more than one at once.

For me it's like when the Others are close to the "top layer" or to "the front" of the consciousness I am aware of their presence (I feel their thoughts, feelings, wants, needs, etc.)

Also, I will start to feel "myself" shift and morph into something that is not "myself". For example, I will begin to feel really tingly and lightheaded and things don't look right anymore. Like things might look black and white.

Or for example, I will feel like I'm spinning on a merry-go-round and it will feel really disorienting and makes me really dizzy like I'm falling. This is usually brief and last seconds to minutes and sometimes maybe an hour or more? It seems so go along with switching (though that is not a word that I prefer to use, I would much rather use the word "phasing").

And during this time I will perhaps hear my voice talking but using words that aren't my own and thoughts that aren't my own and it doesn't even sound or feel like "me".

The thing is, others outside of myself (like my family and friends) don't really seem to notice because it's so covert. And so I don't think people believe me. I hate that part of this. Because my Others do not present like your typical DID patient's alters might. And since my Others use me as the shell through whom they act it seems like to my friends, family, and significant other that I am just "being moody" or "acting like a baby". And it's so covert that people don't really seem to buy the whole multiple personalities, because in my case it seems so much like me/the switching is so subtle. But I can tell a switch has happened because of how I feel (or rather a change in how I feel/think/act).

Also, I associate my others with colors and myself as being clear like a clear plastic shell. So when someone(s) is present and forward I will become their color (since I, the front, is clear) and that's how I know who is who, because their color fills me.

Does any one else ever feel like they spin? And if so what does it feel like for you?

Does other people feel like they are a shell alter? Or like they are clear?

Do other people experience their others in terms of colors?

 

[chant2012]

***I don't think I have ever been able to "see" what any of my alters looks like, at least that was what I thought...***

***Nor have I been able to see any internal world, so of course I believed I didn't have one...***

***Nor have I ever been able to communicate with my others, at least I always thought that was the case...***

But some things have started happening that make me question all those above assumptions.

1) I only have been able to "see" one alter and it was only just recently. I it's not really that I "see" her but rather I just got a flash of a picture in my mind... So I went online searching for something that looked like her and I found one! She looks just like Jessica Rabbit from "Who Framed Roger Rabbit?" Her name is Vixen, I always knew that. And I knew her color was a deep maroon/plum color... But I just recently figured out she identifies with Jessica Rabbit and it just "feels right".

Does that count as "seeing" my alters? I am sad though because I want to "see" the others. I am impatient!!!!! ANGRY! Wanna meet others inside an be frends... Get too impatient.

2) A few days ago I saw "inside my head", a picture of a bright blue sky, flowers, and a big tree - under that tree was a black cat that was staring back at me intently and swishing its tail. I think this is maybe an animal aspect/alter. Because at the time I was feeling very cat-like (wanting to rub against everything, wanting to purr, etc.)...

Does that count as getting a glimpse of an internal world?

3) I never hear voices. Instead I just get like "messages" or "direct thoughts" (like telepathy) or I will "just know" something but not know how I know it... I will also get intense feelings and messages like "This is the truth." and things like that. Sometimes I have "felt" screams... But I can't actually hear them...

Does these things count as "hearing voices"?

Thanks all.

 

[chant2012]

Does anyone have the feeling of having multiple realities all at once?

I seem to and I don't know how to explain it to my BF. He gets so mad at me and calls me a liar and it gets us into lotsa troubles.

Cuz a lot of times I DO have problems saying things that are untrue. I lie a lot. Idk why, but I am not even sure if they were/are really all lies anymore.

I mean, I know I do lie. I flat up lie sometimes. But looking back some (perhaps many) of those times now actually seem like maybe they weren't really lies at all (at least not fully) but were actually me switching and not even knowing it and was thus thinking that it was "me" who was talking when it really wasn't, at least not entirely, as I am about always present and in front and control.

I have always just thought, "Oh that's just me being flaky and indecisive."

Or "That's me being moody." etc.

But what if it wasn't? What if I just didn't realize what was happening!!!

The other thing I struggle with (and have wondered how other people deal with so please feel free to share your experiences) is being angry and confused.

It's really difficult to feel one way "a bit earlier" and have it be 100% true, and yet an hour or even minutes later say something completely opposite.

It leaves me extremely confused and disoriented at times because I was feeling and thinking something that honestly felt completely "mine" and now I can not seem to understand how I even felt that way because now I feel something completely opposite and yet now THIS feels, with the same intensity, like "MY" thought and sometimes I cannot even accept the previous thought as valid, let alone "mine"... And yet at the time, when I had the thought, I was SURE it was MINE.

Does anyone else feel like this or deal with this multiple realities/alternate realities type of feeling? If so how?

And do other people constantly contradict themselves and are thus called liars?

 

[theshadowoftheliving]

@Saladbowl I've taken a look at that site and do like it. Thanks for the reminder to look again.

Yes! The best information I've found is the personal experiences of people on here and in blogs I've found

Agreed. Plus, a huge part of this all is the desire to understand from an embodied perspective, not just a clinical one. Understanding the technical stuff is never a problem for me, but applying it to myself is so, so hard.

All the info and textbook knowledge in the world is totally unrecallable and inaccessible when spiraling out, when the people in my head scream too loud, when fingernails on the chalkboard screech.

I'm sorry this is true for you, but I totally relate. When I'm losing it to the voices inside, I can't recall any of the academic stuff at all.

Yes very misunderstood, my latest therapist asked "how do I switch it off?" :facepalm:

I can only integrate the parts, not turn them all off entirely.

Sometimes I dream about turning off these parts, and I've had therapusts who've wanted me to do that, but you're right - totally impossible.

In a way I feel fortunate because I am more whole, in a sense, but at the same time I don't really feel any more whole, just more aware maybe? And I guess that's a good thing. At least everyone who has full-blown alters tells me it is anyway. But it just feels so invalidating to me to be "not quite" single nor not adequately multiple either.

@chant2012 I wish I had answers for your questions, but I'm very much figuring this out as well.

 

[Deleted member 29920]

Yes, I'd like to switch them off and it's impossible. I don't even like talking about it because it makes me feel spaced out and really weird. :(

 

[BuckarooBanzai]

" I know a good chunk of those diagnosed with DDNOS will later have their PTSD diagnosis revised to DID.

For people with DDNOS/DID - any insight into understanding where you fall on the "not yet/not quite" scale?

Yes, many to most of the DDNOS folks are later diagnosed with DID.

The general rule is not to diagnose DID formally until the professional has actually communicated with alters and is convinced of the diagnosis. So, practically speaking, a professional suspects DID, gives the DDNOS diagnosis, and then waits to see what happens.

NB: An interesting fact about DID is that it is quite possible to have alters and such, and yet hide one's signs and symptoms to the degree that the professionals never gather enough evidence to finalize a DID diagnosis. Whether the diagnosis is made, then, really has to do with how well the multiple functions in the real world.

 

[watundah]

After months of observation, my T "suggested" I have DID but we've agreed to not haggle over labels.. Oddly, I had zero clue until I started non-dominant hand writing inner child exercises…and then I was writing with three alters and a fourth and fifth just showed up. I don’t lose time and have had a fully functional life but obviously “pockets” of trauma are still harbored in these alters. They don’t dialogue in my head, the only communication is art or writing. My therapist said they need to start talking to each other. Part of me thinks, if I do no writing, no diagnosis, but really this is where the healing lies, I know. There is one part that I see in me, the rest live only in writing. She would like to communicate with my parts but they remain nonverbal but will write in response to her questions. Do I really want these parts to communicate in my head or out loud? I think not.
Right now it’s a 100% controlled environment until I pick up a pen. A lot of forgotten trauma has come out and is throwing me for a loop. (well, it all is..). I would love your feedback. I too wonder how this can be really since it's coming out so late in life.

 

[theshadowoftheliving]

An interesting fact about DID is that it is quite possible to have alters and such, and yet hide one's signs and symptoms to the degree that the professionals never gather enough evidence to finalize a DID diagnosis. Whether the diagnosis is made, then, really has to do with how well the multiple functions in the real world.

The fact that I am functional has always been a difficulty in getting help. I think that if I couldn't work or function, that therapists would be more likely to label me - but I hold down a really high-powered job and keep up friendships, a household, etc. I'm always just too high functioning. I'm so exhausted by trying to function, though.

Right now it’s a 100% controlled environment until I pick up a pen. A lot of forgotten trauma has come out and is throwing me for a loop. (well, it all is..). I would love your feedback. I too wonder how this can be really since it's coming out so late in life.

I've always wondered about this for me, too. Why now? Why not a year or five or ten ago?

 

[watundah]

@theshadowoftheliving My therapist suggests that I've created a safe place for them Maybe the opportunity wasn't there or the true self has been dominant. It's fascinating and I'm trying to not get whacked out about it.

 

[theshadowoftheliving]

@watundah All of that makes sense ... intellectually. But, I find it hard to swallow in a practical sense (for me, not you). I end up cycling back to the same thing over and over and over again: why have I managed to be so okay (relatively speaking) for so many years if my mind is so broken?

And can I just put them back into the "safe place" and continue to ignore them?

 

[watundah]

Yess, yes,.me.too. But they harbor a lot of wisdom, secrets and pain. Hoping the pieces all fit together well some day.