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Discussion Starter · #1 · (Edited)
It’s great to see folks in this forum supporting each other. This stuff is HARD. I’ve also noticed that a lot of people here, like me, experience other dissociative symptoms in addition to depersonalization/ derealization. Amnesia, for example, or “spells” of DP/DR that suggest shifting between various internal states.

I wanted to share some thoughts I’ve been having about “dissociative disorders” and how they are diagnosed. On the one hand, I don’t think it’s always healthy to focus on these made up labels, especially given the fact that many of us have had not so helpful experiences with mainstream therapy/psychiatry. On the other hand, I think the specificity of a diagnosis can be really helpful when we realize that we are not alone, that there are many others who may be having very similar symptoms/experiences to our own. Sometimes we feel like we are the only one, or that no one else can get it, but a diagnosis reminds us otherwise.

I think it’s helpful to see dissociative experiences on a spectrum, with the normal occasional dissociation that all humans experience on one end, and dissociative identity disorder (DID) on the other. Along this spectrum, there are discreet diagnoses, such as depersonalization/ derealization disorder which fall under the broad umbrella of dissociative disorders. But what if we are in some in between space that doesn’t completely match up with the diagnostic criteria for these labels? That in itself can feel confusing and alienating, especially when we are looking for support groups with other folks who understand and can relate to specific symptoms.

Although it sounds technical to the point of seeming silly, it has been useful for me to become educated on how my own diagnosis (in the language of DSM-V, “other specified dissociative disorder type 1-A”) is different from some other diagnoses because it helps me understand why I have trouble relating to what some other dissociative folks are describing about their own experience.

Here are a couple excerpts from online sources explaining OSDD1-A and how it is distinct from DID. I think they are useful in understanding why folks with OSDD1–A might have a hard time fully relating to the experiences shared by people in support groups for other dissociative disorders (I’m thinking specifically here of groups like this one that are focused on DP/DR or those focusing on DID which tend to revolve around highly differentiated “alters”). I’m curious if some of you all can relate to the in-betweenness described here:

From Comparing OSDD-1 and DID: OSDD-1a is unique but difficult to diagnose because there is no clear boundary that determines if a part is associated with sufficient “discontinuities in sense of self and agency” to warrant a diagnosis of DID. A general rule of thumb is that if an individual has inter-identity amnesia, DID is diagnosed if there are two or more parts that each have an independent sense of self and self history. Indications that parts have an independent sense of self can include parts presenting with their own names, genders, sexualities, or other identity traits or parts having internal communication and relationships with each other. For individuals with OSDD-1a, dissociated parts are more likely to present as the same individual at different ages, as the same individual in different modes, or as different versions of the same individual. The individual may go by the same name regardless of which part is present, and each part may view itself as the main part. However, parts may still have different skills, emotional reactivity, or ways of interacting with the world. Additionally, because these parts lack full awareness of each other and each others’ activities, they may express themselves in highly contradictory ways. For example, someone with OSDD-1a may have a work self, a family self, a 5 year old self, and an angry self in addition to several parts that hold trauma memories. The work self may fully believe that work always needs to come first while the family self always prioritizes family, and these parts may become confused or agitated when others point out inconsistencies in their behavior or stated beliefs.”

From DID or OSDD: Does it matter? | Carolyn Spring “… other people with OSDD do indeed have less obviously distinct parts of the personality and report feeling perplexed when they read about people with DID talking about their 4-year-old part called Alice or their 6-year-old boy part called Ricky. The following personal communication from someone with OSDD (reprinted with permission) is revealing:

‘I don’t have ‘parts’ like other people seem to. I have a sense of myself as being different at different times, feeling younger, or feeling aggressive or withdrawn or panicked, and it’s as if I’m watching myself at times like this. Things come out of my mouth, stuff I’m saying and I don’t know why I’m saying it. I can watch everything that I’m saying and doing, but it’s like I can’t do anything about it and I don’t know what’s going to happen next. These other ‘parts’ of me aren’t clear though – they’re not distinct. They all respond to my name.
We feel ‘younger’ at these times, but I couldn’t put an age on it. A lot of people don’t even realise that I’ve changed – I just get told that I’m moody or something like that. But I know it’s more than that. It doesn’t feel like ‘me’, and when I’m like that I can remember things that I don’t remember the rest of the time, although I’m always worried that I’m making it up. But also when I’m like that, I can’t do other things I normally can, like tell the time. I can just stare and stare at my watch and I know I should be able to figure it out but I just can’t. It’s really weird.’”
 

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Hey Rivers, great post. I had a situation where my first psychiatrist - who dx me with DPDR and then dissociative amnesia - was certain I had no structural dissociation, and he said I have dissociative "capsules" of memory instead. I could tell even then, and I confirmed that after reading to everything there was about trauma and dissociation, that this was not the case, but it was something way more complex.

He discouraged me to talk about the confusing and completely overwhelming experience I was going through, due to unprocessed trauma and an unbearable emotional pain and conflicting emotions that I could not regulate, so I was reluctant to mention it to my second T. He is trauma therapist and I went there specifically to do the EMDR and to integrate the traumatic memories, as I was so hijacked by trauma, that I could not see myself going on without such help. It didn't take long before he was aware of me hardly holding together, not only because I introduced the metaphorical use of parts in order to explain where I stand, even though for me there were more than metaphorical at that point, but there was a lot of inconsistency in my presentation from one week to another, and there were different narrators to the story of trauma, while I was not able to identify with them, even though there were obviously me at a different age.

Anyway, his opinion was that I was, at least at that point, closer to the other end of the spectrum, therefore DID or OSDD, but I didn't insist on dx, even if he was prepared to give it, perhaps because I feared how would I handle any such dx. Par example, when I was first dx with GAD, I thought that was something I will always have, but after doing my own research (and I had to, in order to understand what was going on with me), I realized that I am not anxious, but instead a deeply traumatized person, and I knew that if I resolve the trauma, I will not be anxious any more. Now, unlike GAD, I don't think I can completely overcome dissociation, as I developed it before the age of three, so it is not only my coping style, but I think it is also part of my brain's blueprint, at least for now. I know that it gets worse when I am triggered, and it can get much, much better in some periods when I am stable. The strange thing is that, when it comes back, in any of its forms: DPDR, dissociative amnesia, identity confusion, identity alteration/s, it feels SO familiar. However, when I do not feel dissociated, it feels as if all my memories of it are erased.

That is a complication with amnesia, as there is a lot, a lot of amnesia, that I believe is meant to make the experience of life for me more coherent and therefore bearable, by erasing certain memories that feel too conflicting in comparison with the rest of it. I use the pronouns s/he when talking about some of the children who hold the trauma memories, as I am aware they are me, but I don't have their memories. I am not able to narrate those memories as I, an adult. I have a more or less stable number of parts. When I am aware of them, I remember all other instances in life when I was aware of them. But then, sometimes I cannot identify with that experience either, and I will think that I have made it all up, even though after writing some 1,500 pages, recording everything that I went through, I know it is not something I made up.

So...anyway, take care. It is hard at times. Well, it is, ofc, a grave understatement of the whole soul-crushing experience, but as I feel better now, I have temporarily forgotten how hard indeed it is, lol.

Best,
A.
 

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Discussion Starter · #3 ·
The strange thing is that, when it comes back, in any of its forms: DPDR, dissociative amnesia, identity confusion, identity alteration/s, it feels SO familiar. However, when I do not feel dissociated, it feels as if all my memories of it are erased.
hi Anna, so much of what you wrote resonates with me. I cannot remember a lot of my childhood, the impression of trauma is so vague and blurry and dreamlike, I honestly don’t know if I’ll ever be able to remember more than I do right now.
Thanks for writing, it means a lot to me. I wish I could write more right now but I can’t at the moment, I’m having trouble finding words for all of it.
 

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Hi Rivers. One thing I realized is that we need to trust ourselves, and by that I mean in how we feel about certain things. I also have very fragmented and blurred memories, and I don't feel them as my own for most part, but I learned, after a lot of doubt, to trust the feelings related to those memories (of fear, disgust, shame etc.), as there is the reason for every one of them. Don't worry about writing back, take your time, and know that you can and you will be ok eventually. What we manage to survive as kids, we can manage to process and integrate as adults. Be well, A.
 

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Discussion Starter · #5 ·
I agree, it is a whole process unto itself—learning to trust the feelings and body sensations that contain just as much or more information as conventional “memories”. Even the blankness, the amnesia itself, is information and has a truth to share.
 
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