DID my therapist thinks i have DID/OSDD and i don’t know where to go from here

[brokenpony]

my therapist who specializes in cptsd thinks i have OSDD or DID instead of cptsd w/ dissociation. over 5 years with 2 therapists my dx has gone from ptsd to cptsd to DD, it has been 2.5 years with her. she said she has seen switching and that my level of dissociation and DPDR is beyond cptsd.

the thing is my childhood was “only” emotionally neglectful to my memory, up until about early teenage years when i remember my first sexual violations as isolated incidents, but i never defined them as abuse/assault until recently because they seemed no big deal.

i can’t remember most of childhood in a very fundamental way, especially 3rd through 7th grade, it’s pretty much incomprehensible, and feel like the fragmented memories i can find aren’t mine, third person, lacking all senses and emotion.

looking through photos yields little info or memory jogging and i look so sad and detached in most of them. my parents just say i was quiet and independent and never acted out? i was fine? i never caused them trouble, played by myself, and didnt even need to be told to do my homework (therapist said this is a sign i learned to hide/control myself and emotions young).

i don’t know what could have happened to me to cause this level of identity fracturing aside from maybe the combo of being extraordinarily sensitive as a kid with inattentive parents.

i have a long history of psychological, emotional, and sexual abuse starting in my teens, and my freeze>collapse response is extreme, in the presence of abusive men i just immediately fawn/“serve” and always have, i have a lot of sexual somatoform symptoms now, and recently i have incestuous fantasies i cannot stop “performing” compulsively despite my best efforts to stop, and just it’s a really hard confusing time.

i feel extremely lost and online spaces for DID are overwhelming, full of terms i don’t understand and skew so young, i am 40 trying to understand how this could have happened to me and also coming to terms with the fact that it makes sense in many ways with my high dissociative symptoms and “OOC” behaviors.

i am just wondering who else went from late diagnoses of ptsd/cptsd to dissociative disorder and if you have any advice for how to even start healing and communicating. sometimes i feel like it is true and other times i just shut it down as total nonsense and think about terminating my therapist.

even if i accept it, i feel too old and exhausted and just wonder if me and the others are better off not knowing each other.

 

[Friday]

even if i accept it, i feel too old and exhausted and just wonder if me and the others are better off not knowing each other.

I don’t have DID.

I HAVE felt too old & exhausted for… any of it… since I was about 23.

At 40? OMFG was 23 young. Young young young.

Feelings aren’t facts.

Barometers, for storms coming, certainly. Warnings to heed? Definitely. But? Not facts.

 

[whiteraven]

even if i accept it, i feel too old and exhausted and just wonder if me and the others are better off not knowing each other.

I was diagnosed with DID at 38, and getting to know the others was critical in helping me get to a place where I didn't feel completely crazy all the time. We learned to communicate, and we learned to cooperate. It cut way down on the dissociative episodes that made getting by difficult.

the thing is my childhood was “only” emotionally neglectful to my memory, up until about early teenage years

but how do you know if...

i can’t remember most of childhood in a very fundamental way, especially 3rd through 7th grade, it’s pretty much incomprehensible

sounds like you don't really have a clear picture of a large part of your childhood.

looking through photos yields little info or memory jogging and i look so sad and detached in most of them. my parents just say i was quiet and independent and never acted out? i was fine? i never caused them trouble, played by myself, and didnt even need to be told to do my homework (therapist said this is a sign i learned to hide/control myself and emotions young).

This was me, except for the sad and detached in photos part. My dad was a photographer and would never have tolerated "sad" in the thousands of photos he took.

i feel extremely lost and online spaces for DID are overwhelming, full of terms i don’t understand

I wish the group I was a part of was still active. It was fantastic. I've been in one or two since, and as I recall, they had sections that explained things. Folks in those groups are usually very good about helping others out, too. I think I just read for a few months, learning the lingo and how people interacted. But there are books out there that can help you understand.

sometimes i feel like it is true and other times i just shut it down as total nonsense and think about terminating my therapist.

This is pretty normal. It takes awhile to adjust to having DID--when I first learned about it, I decided just to see what my therapist had to say and to see if it rang true for me. It did.

 

[Movingforward10]

I don't have any diagnosis but relate to a lot of what you wrote.
I harp on about this book a lot on this website. It really helped me take the fear and shame out of a lot of things and helped me to understand. It's called "healing the fragmented selves of trauma survivors" by Janine fisher. She does lot of videos and things on YouTube etc too.
It helps explain parts, how they are formed, what it all means. I found it very very reassuring.

I had relational trauma too growing up. And then the sexual violence started age 11/12. Prior to that it was just being ignored, ridiculed etc. like you, I was very compliant (which led to the sexual stuff I think: easy target).. Have you heard/read about the "lost child"? I don't know if your parents were narcissists, but what helped me understand the full impact of being gas lit and manipulated as a child was understanding how that behaviour changes adults when they are in abusive relationships, so as a child you have no defense at all. Other than to split off into parts. Relational trauma is enough to do that.

 

[Weemie]

For what it's worth, having a label of a dissociative disorder doesn't actually have to mean anything in your life if you're not ready/don't want it to. Your life hasn't changed from one sphere to the next just because of this label. What this label does, might be to offer you a new way of categorizing your past experiences and organizing your future experiences, if you so choose. Your actual experiences aren't changing because of a DID/OSDD diagnosis.

I was diagnosed with DDNOS, and I really do and still do relate to having parts/pieces and I've had these parts with me since I was 4 years old. It's always been a factor of my life, and I "step into" those constructs at times. Sometimes voluntarily, sometimes not. I was finally diagnosed correctly with schizoid - covert schizoid is famously a disorder of facets. I realized that's what it's been this whole time.

It's right in the name, "split-ish." So I'm not crazy, I don't have DID/DDNOS, I do have a form of structural internal organization, it does relate to trauma and memory to some degree - and it's always been like that and it always will. From one sphere to the next, my actual life hasn't changed because the names have changed. I still do all the things I've always done.

My advice is, in dealing with a disorder that is incredibly overwhelming and entirely saturated with FD/MBI - ignore TikTok or YouTube. A therapist telling you XYZ - even that isn't reliable. Iatrogenic illnesses are a real concern in this arena, so if a therapist is telling you that you're doing stuff or you "must be" this or that - take it with a grain of salt. A therapist telling you she's seen you "switching" without relevance or prompting - that's a big red flag.

Focus on the science, and your symptoms. The things that you experience, day by day. And - journaling will help. A lot.

 

[brokenpony]

I don’t have DID.

I HAVE felt too old & exhausted for… any of it… since I was about 23.

At 40? OMFG was 23 young. Young young young.

Feelings aren’t facts.

Barometers, for storms coming, certainly. Warnings to heed? Definitely. But? Not facts.

yeah at 23 i was totally oblivious. i didn’t know i had PTSD until i was 35 or so and it was really overwhelming to find out and everything has gone downhill rapidly since then, pandora’s box kind of effect.

I was diagnosed with DID at 38, and getting to know the others was critical in helping me get to a place where I didn't feel completely crazy all the time. We learned to communicate, and we learned to cooperate. It cut way down on the dissociative episodes that made getting by difficult.


but how do you know if...

sounds like you don't really have a clear picture of a large part of your childhood.

This was me, except for the sad and detached in photos part. My dad was a photographer and would never have tolerated "sad" in the thousands of photos he took.

I wish the group I was a part of was still active. It was fantastic. I've been in one or two since, and as I recall, they had sections that explained things. Folks in those groups are usually very good about helping others out, too. I think I just read for a few months, learning the lingo and how people interacted. But there are books out there that can help you understand.

This is pretty normal. It takes awhile to adjust to having DID--when I first learned about it, I decided just to see what my therapist had to say and to see if it rang true for me. It did.

i feel crazy most of the time these days like really bonkers crazy. i do want to cooperate and coordinate with them but the amount of work to do this sounds so overwhelming and i’m so tired these days. my functioning has tanked and i really need to fix that.

it’s helpful to hear that you got this dx at 38 and are doing better now. can i ask how long it took to establish enough cooperation so that you became functional? what books did you read?

i feel like i was functioning well for a long time, even though i suffered, and then i started processing trauma and had another long trauma and it completely broke me and revealed all the scope of all the rest of the trauma and everything fell apart in my head, and now i can hardly do anything, i am a little scared because i have never felt so helpless.

I don't have any diagnosis but relate to a lot of what you wrote.
I harp on about this book a lot on this website. It really helped me take the fear and shame out of a lot of things and helped me to understand. It's called "healing the fragmented selves of trauma survivors" by Janine fisher. She does lot of videos and things on YouTube etc too.
It helps explain parts, how they are formed, what it all means. I found it very very reassuring.

I had relational trauma too growing up. And then the sexual violence started age 11/12. Prior to that it was just being ignored, ridiculed etc. like you, I was very compliant (which led to the sexual stuff I think: easy target).. Have you heard/read about the "lost child"? I don't know if your parents were narcissists, but what helped me understand the full impact of being gas lit and manipulated as a child was understanding how that behaviour changes adults when they are in abusive relationships, so as a child you have no defense at all. Other than to split off into parts. Relational trauma is enough to do that.

thanks for the book rec, I will check it out

 

[brokenpony]

For what it's worth, having a label of a dissociative disorder doesn't actually have to mean anything in your life if you're not ready/don't want it to. Your life hasn't changed from one sphere to the next just because of this label. What this label does, might be to offer you a new way of categorizing your past experiences and organizing your future experiences, if you so choose. Your actual experiences aren't changing because of a DID/OSDD diagnosis.

I was diagnosed with DDNOS, and I really do and still do relate to having parts/pieces and I've had these parts with me since I was 4 years old. It's always been a factor of my life, and I "step into" those constructs at times. Sometimes voluntarily, sometimes not. I was finally diagnosed correctly with schizoid - covert schizoid is famously a disorder of facets. I realized that's what it's been this whole time.

It's right in the name, "split-ish." So I'm not crazy, I don't have DID/DDNOS, I do have a form of structural internal organization, it does relate to trauma and memory to some degree - and it's always been like that and it always will. From one sphere to the next, my actual life hasn't changed because the names have changed. I still do all the things I've always done.

My advice is, in dealing with a disorder that is incredibly overwhelming and entirely saturated with FD/MBI - ignore TikTok or YouTube. A therapist telling you XYZ - even that isn't reliable. Iatrogenic illnesses are a real concern in this arena, so if a therapist is telling you that you're doing stuff or you "must be" this or that - take it with a grain of salt. A therapist telling you she's seen you "switching" without relevance or prompting - that's a big red flag.

Focus on the science, and your symptoms. The things that you experience, day by day. And - journaling will help. A lot.

i definitely don’t have schizoid PD, but i see your point that she could be wrong about my diagnosis because it happens with symptom overlap. i am extremely dissociative so if it is not a DD i think it is probably cptsd with bad dissociation. mostly i want to know what is really wrong with me because nothing really seems to help me and i wonder why. and if having directed treatment for that thing could help. or if i’m just like 8 mental illnesses in a trenchcoat and that’s the problem lol. i want things to change because they are so bad. if they stay the same i’ll die.

but yeah i am scared of having a misdiagnosis in this! for several reasons. i’m afraid for it to be true and afraid to still not have answers and go down the wrong road. it is hard to trust anyone due to my experiences in life including therapists. i had a sexually abusive relationship with my therapist before this one which is partly what caused me to consider this diagnosis as possibly true, just how all that went down, it was so confusing what happened with me. so i have a lot of trouble trusting my therapist.

i dont know of she used the word “switching” when she said this, i can’t remember, she said something about feeling like she is talking to different people from session to session and sometimes in the middle of sessions, not having consistency between sessions so we struggle to build on previous sessions which isn’t an issue with other clients, some stuff like this. she might have used the word or i might have just put it in her mouth.

can you explain why is that such a red flag? it’s been 2.5 years of 2x a week so it’s been a long time to spend with me before suggesting this diagnosis and making the observation that she thinks this has been happening the whole time just covertly. so we were discussing that she thinks i have a dissociative disorder over some time and then eventually somewhere in there she shared this experience of working with me. i’m feeling a little scared that you said this because as i said i think it is hard for me to trust therapists now.

i do try to journal and also don’t go on “DID tiktok” or anything because it’s all kids pretty much.

 

[NightSkystars1313]

my therapist who specializes in cptsd thinks i have OSDD or DID instead of cptsd w/ dissociation. over 5 years with 2 therapists my dx has gone from ptsd to cptsd to DD, it has been 2.5 years with her. she said she has seen switching and that my level of dissociation and DPDR is beyond cptsd.

the thing is my childhood was “only” emotionally neglectful to my memory, up until about early teenage years when i remember my first sexual violations as isolated incidents, but i never defined them as abuse/assault until recently because they seemed no big deal.

i can’t remember most of childhood in a very fundamental way, especially 3rd through 7th grade, it’s pretty much incomprehensible, and feel like the fragmented memories i can find aren’t mine, third person, lacking all senses and emotion.

looking through photos yields little info or memory jogging and i look so sad and detached in most of them. my parents just say i was quiet and independent and never acted out? i was fine? i never caused them trouble, played by myself, and didnt even need to be told to do my homework (therapist said this is a sign i learned to hide/control myself and emotions young).

i don’t know what could have happened to me to cause this level of identity fracturing aside from maybe the combo of being extraordinarily sensitive as a kid with inattentive parents.

i have a long history of psychological, emotional, and sexual abuse starting in my teens, and my freeze>collapse response is extreme, in the presence of abusive men i just immediately fawn/“serve” and always have, i have a lot of sexual somatoform symptoms now, and recently i have incestuous fantasies i cannot stop “performing” compulsively despite my best efforts to stop, and just it’s a really hard confusing time.

i feel extremely lost and online spaces for DID are overwhelming, full of terms i don’t understand and skew so young, i am 40 trying to understand how this could have happened to me and also coming to terms with the fact that it makes sense in many ways with my high dissociative symptoms and “OOC” behaviors.

i am just wondering who else went from late diagnoses of ptsd/cptsd to dissociative disorder and if you have any advice for how to even start healing and communicating. sometimes i feel like it is true and other times i just shut it down as total nonsense and think about terminating my therapist.

even if i accept it, i feel too old and exhausted and just wonder if me and the others are better off not knowing each other.

I'm fairly new to C-PTSD as of last April. I was diagnosed with PTSD in the 1990s but it wasn't addressed. My therapist was great at first. Months later she was trying to pin another illness on me, two. She kept saying you have more than c-ptsd. I have had fibromyalgia for 23 years. It plays a huge part in my life but she didn't want to talk about it..making a wrong call that is a pain syndrome. I have ADHD also that she wouldn't look at it as part of my problems. I fired her and it was the best thing I could have done. Good luck Best Wishes

 

[Weemie]

mostly i want to know what is really wrong with me because nothing really seems to help me and i wonder why. and if having directed treatment for that thing could help.

My opinion, treat the symptoms that are happening. If your dissociation is this disruptive, then going back to your core identity and attachment is not a bad idea.

can you explain why is that such a red flag?

You said that your therapist said you've been "switching in sessions" - to me this is a red flag, especially if she hasn't actually assessed you for DID (since she would not know if you were switching or not). Her saying "this is my experience of working with you, and your demeanor has changed throughout sessions" would be different than her saying "yeah so you're definitely switching all the time" which is why I brought it up.

If it was more like the former, then that is not as big of an issue. The reason I mention it is because this is a pretty controversial diagnosis, and if your therapist is not a specialist in DID it is easier for her to overstep. I would do some research into iatrogenic illnesses - that is, when patients are prescribed their disorders by therapists instead of assessed based on presentation, and wind up adopting symptoms that they ordinarily wouldn't have.

That way you'll have a better understanding of whether your therapist is behaving normally. You could also share this concern with your therapist and gauge her response. A healthy therapist would help you work through that.

 

[Sideways]

You said that your therapist said you've been "switching in sessions" - to me this is a red flag, especially if she hasn't actually assessed you for DID (since she would not know if you were switching or not). Her saying "this is my experience of working with you, and your demeanor has changed throughout sessions" would be different than her saying "yeah so you're definitely switching all the time" which is why I brought it up.

I agree that it’s not the right way to have the conversation. High levels of dissociation come with high levels of suggestibility, which means that we unconsciously take where our therapist is heading and internalise it into how we then perceive ourselves and the world.

It’s also unusual to have suggested to you that it’s DID rather than CPTSD (with dissociative symptoms), because PTSD has some pretty distinct symptoms that dissociation doesn’t account for.

More often, the diagnosis ends up being (c)ptsd and DID. It’s very common (read: standard) for DID to replace other diagnoses: schizophrenia, BPD, Bipolar, etc that have been initially diagnosed but turn out to be wrong. But PTSD tends to stick.

Another concern is that switching in therapy isn’t unusual when dealing with a person with CPTSD - the significant overlap with BPD explains that unless there’s amnesia and specific functional impairments that accompany the switching.

None of that means your T is wrong. But it does sound like they’re on the very edge of their expertise. There are dissociative tests (like personality tests), like the Dissociative Experiences Scale, that you can do to give you a guide of how high your dissociation is, although these aren’t diagnostic and it sounds like you already know you’re high on the dissociative spectrum. But I did find they provide some insight into my dissociative symptoms when I was hauling myself through the diagnostic minefield.

 

[brokenpony]

I agree that it’s not the right way to have the conversation. High levels of dissociation come with high levels of suggestibility, which means that we unconsciously take where our therapist is heading and internalise it into how we then perceive ourselves and the world.

It’s also unusual to have suggested to you that it’s DID rather than CPTSD (with dissociative symptoms), because PTSD has some pretty distinct symptoms that dissociation doesn’t account for.

More often, the diagnosis ends up being (c)ptsd and DID. It’s very common (read: standard) for DID to replace other diagnoses: schizophrenia, BPD, Bipolar, etc that have been initially diagnosed but turn out to be wrong. But PTSD tends to stick.

Another concern is that switching in therapy isn’t unusual when dealing with a person with CPTSD - the significant overlap with BPD explains that unless there’s amnesia and specific functional impairments that accompany the switching.

None of that means your T is wrong. But it does sound like they’re on the very edge of their expertise. There are dissociative tests (like personality tests), like the Dissociative Experiences Scale, that you can do to give you a guide of how high your dissociation is, although these aren’t diagnostic and it sounds like you already know you’re high on the dissociative spectrum. But I did find they provide some insight into my dissociative symptoms when I was hauling myself through the diagnostic minefield.

agh i feel like i am not being clear. it wasn’t suggested that it was DID or PTSD. i would have both, and right now i just have the PTSD diagnosis and a generalized dissociative disorder diagnosis (the most general one). i don’t have BPD, i don’t meet most criteria for it and she doesn’t mean emotionally dysegulated shifting mood in that way. i do have a bipolar 2 diagnosis from my psychiatrist that fits me better than BPD but still doesnt really fit me in my opinion. so i say that i think it would be the CPTSD dissociation interfering so much with therapy/my life instead and its all PTSD. she didn’t say i had DID instead of CPTSD.

she isn’t a specialist in it but she has started consultation with one and also is planning to do more training in it soon with ISSTD. i did the DES II already and she said i scored typical of DD range. we have only been exploring the diagnosis as a possibility and i have planned to take the MID at home so she can score it but every time i try to do it i get dysregulated and stop. she never just came out and said that i had DID and switched. it was more like i described in my reply to Weebie. we started talking about it after 2ish years of therapy and she explained her experience of me in sessions. she thinks i have DID or OSDD at this point from these years and discussions, but the discussion began with a more general talk about my dissociation being clinically severe and has evolved from there over the course of 3-4 months to this point.

you guys are making me really nervous that i have another bad therapist.

 

[Sideways]

you guys are making me really nervous that i have another bad therapist.

Sorry, not the intention. Was really just reflecting off the way you’d initially described it, but your latest post sounds very different.

In terms of how to get started with internal communication, that’s going to depend in part on the degree of awareness that your parts have of each other. But however you approach it? Go really slow.

If you do have alters, and they have been coexisting without awareness of each other, that degree of compartmentalising has been serving a protective purpose. Typically, the early stages of communication with alters is incredibly destabilising, because you’re removing the protective factor of keeping parts that operate in isolation together, often in circumstances where they are structured in direct conflict with each other.

Short version? Initial communication is very often destabilising. It will take time for your different parts to feel safe with each other. It may be helpful to create a safe internal space, with clear boundaries about acceptable interaction, before allowing parts to start communicating with each other.