New diagnosis

[NightSky]

I have been with my therapist almost 10 years now and we’ve done a lot of really good work. She felt I was ready for emdr so I had one session with someone new for that. That therapist is working with my main T. EMDR T recommended I complete the MID assessment. My score on that prompted them to have me complete the DDIS and due to the results of that, I’m now diagnosed with DID even though that has never been on my horizon.
This just happened and I feel so much confusion and have been in fight/flight for two weeks now. I’ve had conversations with my EMDR T, my regular T, and my marriage therapist, all who seem optimistic and say this gives my support team a way forward when I have been stuck so many times in the last ten years. But all I can think about is how this has never occurred to me. I don’t feel like I have alters. Although I know I switch to different rigid modes depending on who I’m with and I don’t have control over that. But I feel very much blindsided and scared. And I guess I’m looking for anyone with words of encouragement or experience or resources that might be helpful to tide me over until I can gain a better understanding of my system with my T.

 

[whiteraven]

My score on that prompted them to have me complete the DDIS and due to the results of that, I’m now diagnosed with DID even though that has never been on my horizon.

Hoping they didn't diagnose DID solely based on the interview scoring. There's a lot more that goes into that diagnosis. Not sure where you are located, but in the US, we follow the DSM-5. The criteria for DID can be found on this site:

Dissociative Identity Disorder Signs, Symptoms and DSM diagnostic criteria

 

[Sideways]

When I got diagnosed with DID, I felt like I must be completely insane. It’s a genuine ‘insanity’ type diagnosis, right? In which case, they’re essentially saying I’m completely mad.

Actually, that wasn’t what they were saying at all.

And more importantly, the label didn’t change who I am. I was exactly the same person walking into that appointment as I was walking out.

Helpfully, it gave me a way of understanding just how dissociated I get. Specifically dissociation, as opposed to the various other forms of dysregulation that comes with having ptsd. You tackle dissociation in a particular way - differently to other forms of dysregulation. And in that regard? The diagnosis was immensely helpful.

 

[NightSky]

When I got diagnosed with DID, I felt like I must be completely insane. It’s a genuine ‘insanity’ type diagnosis, right? In which case, they’re essentially saying I’m completely mad.

Actually, that wasn’t what they were saying at all.

And more importantly, the label didn’t change who I am. I was exactly the same person walking into that appointment as I was walking out.

Helpfully, it gave me a way of understanding just how dissociated I get. Specifically dissociation, as opposed to the various other forms of dysregulation that comes with having ptsd. You tackle dissociation in a particular way - differently to other forms of dysregulation. And in that regard? The diagnosis was immensely helpful.

Thank you for this perspective. This is helpful.

 

[arfie]

did is not on what i call, "my psycho smorgasbord" where a mind boggling selection of psych dx'es have been served, but that dizzying array of potential labels sure has given me some vicious belly aches. maybe "did" is on that smorgasbord but was called something different back in the 70/80/90's. that has happened many times since my first therapy session in 1972. some of the dishes on that smorgasbord were discontinued quickly. it's been a long time since i've seen workshops for "superwoman syndrome." some were given new and improved names. ptsd is one of the name changes i really do feel is an improvement over, "civilian shell shock." others became seasonal. sometimes i show symptoms of schizo affective disorder, sometimes i don't.

dunno. . . all that still confuses me, but i approach ^it^ in a spirit of, "it pays to keep an open mind, but not so open that your brain falls out." i consider the possibilities, but reserve the right to reach my own conclusions.

 

[Susan Jane]

I am not sure what DID feels like, but when I read about it, I get very stressed and scared. I also have a history of feeling outside myself and it has been one of my most scary symptoms. I was wondering if one of you would be able to explain it.? I know I can read the clinical explanation, but I feel better when I read a personal account about such things. If anyone feels they can share, it would be appreciated. Susan Jane

 

[dharmaBum]

When I got diagnosed with DID, I felt like I must be completely insane. It’s a genuine ‘insanity’ type diagnosis, right? In which case, they’re essentially saying I’m completely mad.

Actually, that wasn’t what they were saying at all.

And more importantly, the label didn’t change who I am. I was exactly the same person walking into that appointment as I was walking out.

Helpfully, it gave me a way of understanding just how dissociated I get. Specifically dissociation, as opposed to the various other forms of dysregulation that comes with having ptsd. You tackle dissociation in a particular way - differently to other forms of dysregulation. And in that regard? The diagnosis was immensely helpful.

I am literally having exactly this experience. I am less than 24 hours from the moment of confirmed diagnosis for severe DID, comorbid with a longstanding diagonosis of chronic PTSD. Part of me is freaking out about what the heck? I definitely don't have two distinct personalities?!? But the rest of me is like, yep, this is who I was yesterday, and who I'll be tomorrow, and hopefully having my medical/mental health provider know this will improve my treatment outcomes.

It is not the same as suddenly finding an attack of cancer. It is still a lot to take in though. Much of it is affirming regarding severity of trauma, hence need for dissociative habits, which then become foundational to personality at some point?

Haven't had a treatment session yet with this new diagnosis, but it helps explicate notions I've had during previous EMDR that it is not "me" who feels a certain supportive cognition is valid or invalid, but a younger ego-state of myself. It also helps to understand current imagery of graphic self-harm that I've had that doesn't seem to come from "me" at all. It seems to come from outside of me and has nothing to do with my thoughts or emotions. I didn't realize this doesn't happen to everyone.

 

[dharmaBum]

I have been with my therapist almost 10 years now and we’ve done a lot of really good work. She felt I was ready for emdr so I had one session with someone new for that. That therapist is working with my main T. EMDR T recommended I complete the MID assessment. My score on that prompted them to have me complete the DDIS and due to the results of that, I’m now diagnosed with DID even though that has never been on my horizon.
This just happened and I feel so much confusion and have been in fight/flight for two weeks now. I’ve had conversations with my EMDR T, my regular T, and my marriage therapist, all who seem optimistic and say this gives my support team a way forward when I have been stuck so many times in the last ten years. But all I can think about is how this has never occurred to me. I don’t feel like I have alters. Although I know I switch to different rigid modes depending on who I’m with and I don’t have control over that. But I feel very much blindsided and scared. And I guess I’m looking for anyone with words of encouragement or experience or resources that might be helpful to tide me over until I can gain a better understanding of my system with my T.

I gave you a "thumbs up" just to let you know I read everything and feel for you! There isn't an appropriate emoji in our list for what you are going through. I hope this Dx is a sign that things will keep getting better for you and that your care team is listening and is trying to use their training for the best in your recovery.

 

[Freddyt]

And more importantly, the label didn’t change who I am. I was exactly the same person walking into that appointment as I was walking out.

Precisely. Kind of weird but before Christmas at my last appointment my T listed off work to be done and threw "parts work" in there.
It had never been mentioned before so it was a bit of a surprise.
Part of my acceptance is that there are times I get really dissociative and when that happens, I really don't know whats happening so while I'm not aware of it - it could be happening.

I always look at it as you have to know whats wrong to fix it.....

 

[shimmerz]

I think everyone who has early childhood trauma has some sort of dissociative disorder. I was diagnosed originally with DDNOS (I think this is an old classification) but definitiely not DID. Another T said I was definitely DID. Another said I was bipolar - any other T's scratch their head at the bipolar designation.

Psychological diagnosis is not a fully quantifiable process. It relies heavily on subjective interpretation — of reported experience, observed behavior, and clinician judgment. Unlike many medical diagnoses, there is no definitive biological test that confirms most psychological conditions.

Just for the record, I don't believe any of them. After doing my own research I relate more to the structural dissociation theory, which is just that - a theory. But here is what I mean by best relating to it. I can relate better to it and work at recovery better when keeping that idea in my mind. And I think that is what really counts. I am the one that is working the hardest on healing. I am the one that manages day by day what will lead me towards a richer life.

I say, work with what makes you comfortable based on your own experiences? Do you dissociate? Do you lose time when you dissociate or do you just zone out and lose focus? Do you lean towards flight/fkight or freeze/.fawn/collpase? Have you found routines that can help support you?

Wishing you peace and comfort as you sort through this. All these different dx's can be a real rollercoaster. I say take them with a grain of salt.

 

[Freddyt]

was diagnosed originally with DDNOS (I think this is an old classification) but definitiely not DID. Another T said I was definitely DID. Another said I was bipolar - any other T's scratch their head at the bipolar designation.

Because most of this is based on the skill and experience of your T and whether they do their homework on their clients.

Mt first T was all EMDR. My current is EMDR , somatic, and weird stuff I have no idea what the hell it is. One of my last sessions she had me talking about my Snoopy and the Red Baron video game. Not a clue what it was about BUT a thing we have been working on for along time moved. Enough to resolve what was at the root of it and many years of falling nightmares has stopped.

So, to me, a T who doesn't explore all the possibilities and eliminate things with clear evidence of what it is an isn't, is not doing what they need to for you.

 

[shimmerz]

Because most of this is based on the skill and experience of your T and whether they do their homework on their clients.

I agree. Sadly, within my health care system (Canada), doctors need to provide a dx first and follow the treatment plan for that dx. No room in that for getting to know their patient first - so really it is based on 'first glances'.