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Default Oct 05, 2019 at 05:27 PM
  #1
When I first received a diagnosis of DID, I had never read any book or watched any movie on that subject. I didn't know what that was. I only knew what was being told to me by a pastoral counselor, a fellow person I knew with DID, a phone/online therapist, and my therapist while I was in-patient at a trauma-treatment facility (who evaluated me based on me and the therapists who were trying to help me).

I continuously doubted my DID diagnosis, and my polyfragmentation.

I continuously avoided painful memories, which continuously fed into my doubting my diagnosis because it meant that I would have to face those painful memories.

I continuously doubted myself because there were parts of me that had dreams, goals, successes, and gains in life that I fear I would lose (and actually have lost anyway) if I faced those memories that were a part of me regardless of whether or not I believed them, faced them, or challenged them.

Over time, I received treatments to help me with trauma and dissociation. Over time, I've received misdiagnoses and changed diagnoses.
Over time, I've learned vicariously through the different treatments and retraumatizations I had experienced.
Over time, I've learned to accept me in the process of all these different treatments, labels, judgments, acceptances, and referrals.

Once co-conscious, I revisited my doubting my diagnosis over and over again.

Once partially integrated, I revised my doubting a PAST diagnosis over and over again, since I no longer met the criteria for DID but had changed through healing to be more of PTSD (chronic, complex, PTSD) with dissociative features or whatever. I no longer lost time (which is a good thing, because losing time is scary), and I was in control of my life and who I was was and my feelings and my behaviors , though I'm not in control of intrusive thoughts, memories, and nightmares, but I do what I can to manage my feelings when those things do arise.

To this day I doubt, and guess what, so do many of my changing therapists! Some doubt that I've ever had it, while others contend that I had it but got better.

As a result of my doubting, I went to college and aced all of my courses in psychology. That only worsened my doubts, believe it or not! However, I had more compassion for myself and others in the end, even though I initially regressed when challenged by well-meaning scholars who were curious about my diagnoses and my story. That didn't bode well for any of us, and it worsened me, which told me that I would suck at therapy since I didn't have everything resolved, even though I had the tools to manage them. My doubts continued, and so did the stigma that went along with them.

Stigma about my age, my disabilities, my past and present diagnoses (both mental and physical), my being overweight, my being a veteran, my being on disability, my being poor (at the time), etc. Microaggressions are traumatic, and so is straight out discrimination or inquiries that border on discrimination. The label, DID, only benefited me when I needed treatment to manage my dissociation. The label did nothing for me in terms of getting social support from my peers let alone psychology professors; in fact, there's a reason why we hide not only that diagnosis, but also our alters - though alternate personalities are the ones who typically decide to come out and reveal or not, not the host. Being partially integrated and fully co-conscious as a good result of healing from DID makes it all the more challenging for clinicians, disability services, peers, loved ones, and newbie therapists to keep up with our changes. It makes it easy for doubt to settle in, and that doubt reinforced brings back the doubt in our original diagnosis.

News flash: When you begin healing and no longer meet the diagnostic criteria of a mental disorder, then you will not retain the diagnosis. It's like having cancer. If you go into remission, you are no longer a person with cancer. Why retain that diagnosis? Why the need if the point is to heal from it?

PTSD seems to be what remains, and until they find a cure, it tends to resurface. Sure, dissociation can also resurface, but there are benefits to being aware, co-conscious, and partially integrated. I have not yet fully understood what it is to be fully integrated, and I'm scared because my PTSD symptoms worsened when I learned to manage and heal my dissociation. Nevertheless, I would never want to go back. Losing time is scary, as is not knowing who you are or what you've done. Having dissociative fugues are scary. I still feel like I'm having an out-of-body experience at times, and I still feel the emotional storms and intrusive thoughts connected with every alter's triggers from the traumas those parts of me experienced.

Regardless of the changing labels/diagnosis, I know who I am, what I struggle with, and that I'm not alone. What I don't have yet is trust in someone whom I could tell everything to - every fear, every memory that keeps resurfacing, every somatic issue, every secret that I was forced to keep, and every secret that I kept for myself. What I haven't processed are the moral injuries, the unconventional grief and loss issues, the abuses I encountered in some therapeutic settings (including one from a pastoral counselor), the doubts that I continuously have about all this - especially after having been able to pass many psychological tests to get into the police reserve academy prior to the military and how none of my dissociative symptoms (but most of my resilience factors) were detected then, but only later. I've doubted myself for so long, and those doubts only get reinforced by the stigmas in society. What doesn't get reinforced is the processing of those doubts, the healing from self-doubt and the aftereffects of other-doubt. What doesn't get reinforced is the acceptance of me with all these present and past symptoms, regardless of a diagnosis. What doesn't get reinforced is the need to simply accept where we are at right now without falsely attributing them to something that doesn't exist, and to learn trust is to be trusted and not questioned over and over again to the point of giving in to someone else's opinions of you and what you should be doing or not doing.

What doesn't get reinforced are the strengths we hold, despite our doubts.

What needs to change, apart from our getting better and therefore getting different diagnoses to mirror our healing, but also the acceptance of our new selves as we go through our healing journeys. What needs to change is the ways in which our therapists or new therapists understand that DID is not a static diagnosis, especially if a client has had treatments in the past to help them integrate or manage their dissociation. It's going to change, but that doesn't mean it never existed, nor does it mean that the client is susceptible to regression. It means that more understanding and trauma-informed training is needed. It means that the lexicon of trauma should be expanded to include diagnostic changes, which should be celebrated if someone had healed - not shamed into scrutinizing the diagnosis in the first place.

Many "dissociators" were already dealing with misdiagnoses and the stigmas affiliated more so now with DID. We deal enough with doubt. We deal enough with secrecy and hiding. What we need more is openness, understanding, and trust from others if we are to effectively and vicariously learn how to build trust with/to others. Trust goes both ways - from client to therapist, and from therapist to client. It helps to know that us trauma survivors are believed, and to no longer reinforce doubt but rather to explore it.
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Default Oct 06, 2019 at 05:09 PM
  #2
Thanks so much for this post, lillib. I can relate to so much of it.
Denial and doubt are old friends.
Shifting experiences - from full amnesiac blackouts to co-con to slipping and sliding states of self - are confusing realities that muddy the waters of denial too.
Labels require definitive yes or no criteria and I see so many people get hung up on which label fits. When I think the reality is more like a fluctuating spectrum.
Perhaps one day the dissociative disorder criteria will shift to be more like the new understanding of autism spectrum disorders. They used to have Aspergers and then Autism as separate diagnoses, much like OSDD and DID. Now they recognise that both Aspergers and Autism are on the same spectrum, and there is little point in separating the two. Just like OSDD and DID (and PTSD and complex PTSD) are on the same spectrum with the same causes and the same treatments. There is little value in chasing a precise label. The problem is not a label, the problems are the result of trauma. You treat the traumatic sequelae regardless of what letters are deemed to fit on the box.
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Default Oct 06, 2019 at 08:20 PM
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Wow,I think both of you said that very well lillib and amyjay.
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Default Oct 07, 2019 at 04:34 AM
  #4
Quote:
Originally Posted by Amyjay View Post
Thanks so much for this post, lillib. I can relate to so much of it.
Denial and doubt are old friends.
Shifting experiences - from full amnesiac blackouts to co-con to slipping and sliding states of self - are confusing realities that muddy the waters of denial too.
Labels require definitive yes or no criteria and I see so many people get hung up on which label fits. When I think the reality is more like a fluctuating spectrum.
Perhaps one day the dissociative disorder criteria will shift to be more like the new understanding of autism spectrum disorders. They used to have Aspergers and then Autism as separate diagnoses, much like OSDD and DID. Now they recognise that both Aspergers and Autism are on the same spectrum, and there is little point in separating the two. Just like OSDD and DID (and PTSD and complex PTSD) are on the same spectrum with the same causes and the same treatments. There is little value in chasing a precise label. The problem is not a label, the problems are the result of trauma. You treat the traumatic sequelae regardless of what letters are deemed to fit on the box.
@Amyjay ...thank you!

On a scientific note, there may be domains of the different trauma diagnoses that are not on the continuum, as I think there is a statistical/mathematical requirement that needs to be met before they can deem a "trauma spectrum disorder". There are strange differences between ptsd and dissociative fugue states and DID. The symptomatic differences make it hard to quantify into a spectrum.

But you are right about what you said about labels and trauma. Trauma is the very thing that needs tk be addressed and treated in any disorder stemming from trauma. Treating symptoms without addressing the trauma is like giving a cancer patient pain meds without chemo or surgery.

I just want to heal. And I want to face my fears about integrating fully.
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Default Jan 25, 2022 at 09:39 PM
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