Diagnosis

So I saw the doctor today. He said that I'm certainly having "dissociative episodes" and diagnosed me with a dissociative disorder. He said it's not clear what sort or to what degree of severity yet, but it's clear one exists. I should be hearing from the clinic in a few weeks to schedule a 3-4 hour evaluation test to try and determine specifics. This will be used to determine treatment.

I am curious, how do I tell the doctor, without sounding like a loon, that I "hear" and "feel" the others in my mind? These people that until very recently I thought were real (due to communication via social media) that are in fact entirely internal. How do I convey this in a way that a doctor would understand and not mistake for hallucinations or something psychotic?

Hi Zor (for some reason we really like your nickname ),

I'm sorry this worries you. What kind of clinic will that be? A specialized one? The doctor at least knows about this stuff; he won't think you're psychotic, I think. If you tell them this, they'll just think; what a creative way to communicate with each other, for all those years.

We always thought we were thinking of writing a story (as a singleton), when actually communicating; this happens in all possible ways, during denial.

Efragment wrote:Hi Zor (for some reason we really like your nickname)

The name comes from Robotech/Macross (the anime).

Efragment wrote:I'm sorry this worries you. What kind of clinic will that be? A specialized one?

The clinic is just the "Mental Health Clinic" at the VA. I am a disabled veteran, so it's what I have access to that's affordable for us.

Efragment wrote:The doctor at least knows about this stuff; he won't think you're psychotic, I think. If you tell them this, they'll just think;

The doctor said he isn't sure if I've got full-blown personas/personalities or whatever term you wish to use.

Efragment wrote:what a creative way to communicate with each other, for all those years.

I can count a handful of them (6 I think currently) that were speaking to me, and others, this way… they had entire groups of friends, some who considered them very good and personal friends. I wasn't even aware they weren't real people (in the physical sense) until a few good friends confronted me thinking I'd been catfishing people all these years or something. It was alarming to find out all this time they weren't real people… and when that got cut off (they closed their accounts before this confrontation, so since that day I've not had this regular communication with them ) everything kind of sucked for a week until I started to hear and feel them internally some. It is not often, but it's once in a while.

I hope the therapy addresses this without pretending they don't exist or trying to bury or erase them.

Wow! They got so creative!!!!

What if you got a journal and could write to each other that way? And you just make it a point to check it regularly?

DelilahKBL wrote:Wow! They got so creative!!!!

What if you got a journal and could write to each other that way? And you just make it a point to check it regularly?

I have never thought about keeping a diary/journal before. Sounds like an interesting idea.


I did get a written note once - I found it on my desk in more or less my handwriting that I don't recall writing. It told me to check out a song by a band Pixie (one of my personas/alters) told me about months before. Being cheeky I wrote back, "it's awesome, thanks" and found, a few days later, "Told ya!" on the same piece of paper. This is the only time this has happened so far, but it's only been a month (and a rather tough one at that) since their accounts were closed. If it wouldn't cause so many problems, I'd leave a note to open them up again. I miss chatting with them, and I know they miss chatting with friends they'd made, too.


Side note: Steampowered Giraffe's song "Malfunction" is very good. You can thank Pixie for that.

sounds like a good entry to diagnosis. most likely you are headed for a diagnostic screening assessment which will be very structured. they ask lots of questions but nothing will make you a sound like a loon. this is really great news.

just be as honest and relaxed as you can so you get an accurate assessment. I had the SCID-D. I thought it would say i that was DDNOS or whatever they call it now. but my diagnosis was DID. it was a little hard to come to terms with, but I'm really glad that I understand my condition now and I've been able to really get on.

keeping some kind of communication book or journal is great idea. it can be by hand in a notebook. or if you really liking typing you could keep it on word. it's really helped us too. we tend to write a lot. dry erase boards or even markers on mirrors. notepads. phone notes and pictures. even text messages and voicemails sometimes. but that's mostly for remembering because we talk pretty good.

sounds like you've got a great handle on things. tremendous courage. and lucky hit on a may be good doc. good luck.

oh. I remember one more thing. I thought when I went in for my test I would leave with my diagnosis. but it takes time to score it. so you might not get your Dx until the next appointment after.

Hi Zor and Welcome

I tried to look up "Pixie" on the web and kept coming back with the band "The Pixies".

If that is the band you mean, then it is quite possible that "Black Francis" crawled into your window to suggest listening to his old band! lol

All kidding aside though.

I am going to guess (and please forgive me if I am wrong. I don't have enough information yet) that you are in the United States? I say this because you mentioned the "VA".

My Cousin just retired from there and like he strongly pointed out a couple years back, Each VA is run separately and so not all are created equal. I mention this because although they "Should" be very "Trauma Informed" it mostly depends on who is administrating that particular one.

3 years back when just trying to find ANYONE in my region (Southern Oregon) who could assess me for Dissociative Disorders using the well trusted DSM SCID-D or something on par, one of the "PTSD Experts" in my region called me back from his office at our local VA and within 5 minutes was screaming at me very abusively that "You don't have PTSD!!! You have a PERSONALITY DISORDER!!!" and then hung up on me! I was at that time and still am on Federal Disability for PTSD.

He had a friend call me a bit later who pretended to be a "Client" fishing for information about me for it was clear he thought I was one of his peer's and another "Psychologist" who had some grudge against him. He called me back hours later I guess after speaking with his buddy who called me asking for an appointment in which of course I said I was a client not a clinician, and he admitted that he had a serious problem and that I was actually very well informed.

The VA in response to this was very upset of course on many levels since the first call was made from their office while he was on the clock and was also about his personal practice. What seemed to upset them most of all, was that at no time did he ever ask if I was a Veteran. I guess that is a big no no not to ask that question.

So much of your potential experience when it comes to these sorts of things has to do with Luck, Location, and Who is Assessing you. Which again goes back to Luck and Location, I guess.

Statistically it takes an average of 7 years to get an accurate diagnosis for Dissociative Identity Disorder. This is a sad reality and why I am trying to warn you in advance.

There are many reasons for this and I don't want to go into them now with you. There are lots of posts in here on that topic and two off the top of my head that are very recent. "Specialists for Dissociation and Trauma" are basic topics of it.

But people do luck out by happening to live in a region that does have knowledgeable and experienced people and some how land them. So it can and does happen. Very very Rarely, but it does.

My advice to you is to Gently advocate for yourself requesting the use of the above mentioned DSM's "SCID-D" or some other well respected assessment tool on par with it. Very very few people know how to use the "SCID-D", or have even heard of it. It's I think sadly is outdated (DSM-IV) and to my knowledge the DSM-5 version of it hasn't yet been published, which may be a road block from having such a powerful tool. But the "Multidemensional Inventory of Dissociation" (MID) is also very reputable. I can't actually find a working link for it ATM, but I just downloaded it and completed it yet again less than two weeks ago. But having it properly processed and scored is yet again very difficult, since yet again is very hard to find Anyone who has heard of it let alone experienced and properly trained to score it. I'm going to ask in Boston next week at the Trauma Conference how and who can score mine.

I'm willing to make a wild guess that since you are a Vet, you may have some knowledge and understanding already about "Trauma" or "PTSD".

"DID and other "Dissociative Disorders" are Trauma-Related. They are much more severe forms of what is called "Simple PTSD" or in "Structural Dissociation Theory" They call "Level I Trauma" or "Simple PTSD". "Level II Trauma" such as ""Complex PTSD" (C-PTSD), "Dissociative Disorders" and "Borderline Personality Disorder". "Level III Trauma" is "Dissociative Identity Disorder" (DID). There are no level's higher. This is a VERY Bright and Highly Educated community when it comes to "Trauma" and "Dissociation". If I am wrong I am sure will be corrected on these matters. I welcome it always.

These "Dissociative Disorders" are all caused by early, chronic and/or severe Trauma as children. But if you are here, I suspect you may already know that from personal experience. We get that all here and is a very safe place for us all as a result. I have yet to find a more sane, kind, and understanding space anywhere like this. I hope you feel the same way as well Zor.

I suspect that if you do land someone decent, they will first screen you for Dissociation using a screening tool like the "Dissociative Experience Scale" (DES), or perhaps a similar screening tool before going into a more in depth assessment tool like I mentioned a bit earlier. That "Should' be standard practice.

If you want to get the jump on this, You can take the "Dissociative Experience Scale" (DES). It's a brief Self Report and although the wording is "sometimes confusing to some people" forget that aspect of the wording and answer "How Often does this happen to you?". You'll see what I mean when you start to try and answer them! lol Many find it just as confusing including my Therapists, so that's "Normal".

It is here...
http://traumadissociation.com/des

Remember it's just a screening test and they just are trying to see how high you are scoring to see if further assessments are warranted. They know one can have very high scores and Not have DID or the reverse of having very low scores and having DID. So don't get too hung up on the results.

Feel free to ask any questions. I feel that the more we know and understand of this, the better off we are. But try and pace yourself and don't over do it. If you are anything like myself or the others I know you will of course ignore this piece of advice and do it anyway! lol

But the reason why we say this is because this get's into some very heavy trigger areas and can be very overwhelming very quickly. Having loved ones and good friends for support is very helpful, but "Multiple Personality Disorder" aka now "DID" is very scary to the average person as is even "PTSD". I suspect you already may have figured that out too. It's partly why Vets only relate and discuss PTSD with Other Vets. Same applies here as well usually. This is a very safe and supportive space for discussing these things with others who also experience them. We Get it.

I have to run and I really hope this information was helpful to you?

One last thing as a helpful reminder...

If you do have a "Dissociative Disorder", you have had it most of your life and so isn't anything new about it. We may have not noticed it until recently, but has always been there, so isn't anything New to be afraid of. I found that reminding myself that, was very helpful and comforting. This is just the beginning of your healing Journey that you are not alone with.

Best Regards
Lumpy

lumpy68 wrote:Hi Zor and Welcome

I tried to look up "Pixie" on the web and kept coming back with the band "The Pixies".

If that is the band you mean, then it is quite possible that "Black Francis" crawled into your window to suggest listening to his old band! lol

Nope, Pixie is one of my "friends" that turned out to be within me all these years. The band is "Steam Powered Giraffe" and the song is "Malfunction".
See if this link works: https://www.youtube.com/watch?v=BE01dViWqAM

lumpy68 wrote:I am going to guess (and please forgive me if I am wrong. I don't have enough information yet) that you are in the United States? I say this because you mentioned the "VA".

I am, and as you go on to state, the VA is VERY hit or miss. I've had horrible problems with their dental clinic (had two teet removed b/c it took too long to get in to have them properly treated to save them), but this experience today was a pleasant surprise (how good it went). I am hoping this doctor is good as he seemed today and is one of the good ones… 

lumpy68 wrote:Statistically it takes an average of 7 years to get an accurate diagnosis for Dissociative Identity Disorder. This is a sad reality and why I am trying to warn you in advance.

There are many reasons for this and I don't want to go into them now with you. There are lots of posts in here on that topic and two off the top of my head that are very recent. "Specialists for Dissociation and Trauma" are basic topics of it.

I had read that 7 year thing here or on Healthy Place (I forget which). I was surprised, honestly, that the doctor was so quick to point out the dissociative actions and episodes. Glad, don't get me wrong, but surprised. Even if, however, it takes years to get a full proper diagnosis from here, this is at least a good first step.

lumpy68 wrote:My advice to you is to Gently advocate for yourself requesting the use of the above mentioned DSM's "SCID-D" or some other well respected assessment tool on par with it. Very very few people know how to use the "SCID-D", or have even heard of it. It's I think sadly is outdated (DSM-IV) and to my knowledge the DSM-5 version of it hasn't yet been published, which may be a road block from having such a powerful tool. But the "Multidemensional Inventory of Dissociation" (MID) is also very reputable.

Part of the reason I sought this forum (well a page with this sort of community) was for the information and support (from those that understand the struggles and difficulties first hand). I am so grateful that places like this exist as a safe place to share and share information. Who knows, maybe some day I can get one my of people to make a post or two (at least two are about the walking antithesis to "shy").

lumpy68 wrote:"DID and other "Dissociative Disorders" are Trauma-Related. They are much more severe forms of what is called "Simple PTSD" or in "Structural Dissociation Theory" They call "Level I Trauma" or "Simple PTSD". "Level II Trauma" such as ""Complex PTSD" (C-PTSD), "Dissociative Disorders" and "Borderline Personality Disorder". "Level III Trauma" is "Dissociative Identity Disorder" (DID). There are no level's higher. This is a VERY Bright and Highly Educated community when it comes to "Trauma" and "Dissociation". If I am wrong I am sure will be corrected on these matters. I welcome it always.

These "Dissociative Disorders" are all caused by early, chronic and/or severe Trauma as children. But if you are here, I suspect you may already know that from personal experience. We get that all here and is a very safe place for us all as a result. I have yet to find a more sane, kind, and understanding space anywhere like this. I hope you feel the same way as well Zor.

I am unsure I have had chronic trauma the way many have. I had a span of 5-7 months where at least some portion of it was I likely being sexually touched by an older girl (a foster child in our home at the time) followed by a year where my father was overseas, and my mother was starving herself to death from anorexia… I am unsure these would constitute "chronic" or "severe" to many, but I know they left a mark on me. I don't remember the kids we had in the home (the foster kids, the oldest was the one that touched me) much at all, very little from that time of my life… literally nothing really. The year that followed I remember very little, but had to do basically most everything in the house and take care of my mom and brother (a year and a half younger). And I know when we moved to Alaska from CA after that year (when Dad got home)… I got there and was emotionally immature and not at all where I should have been for high school and a lot of my "quirks" and oddities (as I viewed them for so long) began during these times- from the 5-7 month period, through that year, and into my early teens and never really went away. I am unsure about when the "others" were present, if they'd been dormant or just undiscovered covert in my mind all this time… 

I do know the time when they became present and active in social media (partially due to FB just becoming a thing, too) I was on two medications with side effects of "mood altering" with hallucinations and what-not. One of them "Xyrem", basically "GHB"- and both I was on the max dosage for. At the time there were some personal issues, making me feel very much trapped, isolated, powerless, emasculated- all the same sort of things I felt as a child in those hard times. So I am unsure if it was just triggered into a more expressive and overt manifestation due to the meds and situation, if it was going to happen regardless, or what. A lot of unanswered questions… 

I suspect that if you do land someone decent, they will first screen you for Dissociation using a screening tool like the "Dissociative Experience Scale" (DES), or perhaps a similar screening tool before going into a more in depth assessment tool like I mentioned a bit earlier. That "Should' be standard practice.

lumpy68 wrote:If you want to get the jump on this, You can take the "Dissociative Experience Scale" (DES). It's a brief Self Report and although the wording is "sometimes confusing to some people" forget that aspect of the wording and answer "How Often does this happen to you?". You'll see what I mean when you start to try and answer them! lol Many find it just as confusing including my Therapists, so that's "Normal".

It is here...
http://traumadissociation.com/des

Remember it's just a screening test and they just are trying to see how high you are scoring to see if further assessments are warranted. They know one can have very high scores and Not have DID or the reverse of having very low scores and having DID. So don't get too hung up on the results.

Thanks, I'll take a look at that screening test.

lumpy68 wrote:Feel free to ask any questions. I feel that the more we know and understand of this, the better off we are. But try and pace yourself and don't over do it. If you are anything like myself or the others I know you will of course ignore this piece of advice and do it anyway! lol

But the reason why we say this is because this get's into some very heavy trigger areas and can be very overwhelming very quickly. Having loved ones and good friends for support is very helpful, but "Multiple Personality Disorder" aka now "DID" is very scary to the average person as is even "PTSD". I suspect you already may have figured that out too. It's partly why Vets only relate and discuss PTSD with Other Vets. Same applies here as well usually. This is a very safe and supportive space for discussing these things with others who also experience them. We Get it.

I have to run and I really hope this information was helpful to you?

All of this was very helpful, thank you so much!

lumpy68 wrote:One last thing as a helpful reminder...

If you do have a "Dissociative Disorder", you have had it most of your life and so isn't anything new about it. We may have not noticed it until recently, but has always been there, so isn't anything New to be afraid of. I found that reminding myself that, was very helpful and comforting. This is just the beginning of your healing Journey that you are not alone with.

Best Regards
Lumpy

Thanks for the encouragement and support. It means a lot to me. This diagnosis wasn't entirely a shock, but it's still a surprise in some ways and it's something that I think I will need some time to come to terms with and truly accept and understand. People like you, and others on these forums, are wonderfully beneficial for this process.

Zor