Dissociative Experiences Scale

Floralie wrote:I just told what they (van der Hart, Nijenhuis and Steele) said in the book and who did the original research. It was because Zor said

It's not really an exact science kind of thing to "measure", is it?

I did not have any opinions on my own, so there's no need to attack.

All I meant by that was that a question and answer "test" can't quantify or discredit (entirely) a person's experiences and life events. My T was quick to tell me these tests provide GUIDES for them (he and the overseeing doctor) to look for the typical signs and symptoms, but they (the tests) on their own can't prove or disprove anything. That said, he followed up with, "your test results are precisely the sort of results we'd expect and see from others with dissociative disorders". So they used the test to help determine what was going on, but it was the discussions WITH ME that determined their diagnosis. The tests AID but don't do the work for them. They're just a tool.

As the doc tells me, the brain is largely not well understood and how it works even less so. "It's not an exact science, each person is different and unique."

Just to clarify what I meant... I don't want anyone to misunderstand me/my comment that was quoted.

I'm writing here rather than making my own thread because it relates to the DES.

I use it reasonably regularly for years to monitor myself. I saw the post about it here and thought I'll take it, about time. I scored 47 which was higher than my last one about a month ago but I'm not surprised.

That's not what I'm posting here about. I used Google as usual to find one, it doesn't matter to me which site because they're the same questions and I get a number at the end that tells me how I am in last couple of weeks and I can compare it.

This time a site came up that I hadn't used before. The site belongs to a woman in my country who has DID, is a therapist, runs seminars and lectures here, has written a book.

That's great. It's exactly what I'd been wanting to find for a while. I hadn't particularly got around to looking due to my own barriers, fear etc but it popped up.

I did the test and another one about somatic something and got my numbers.

However this site, as with some others, you can add an email and details. It's a charity, it offers free support as well as listing DID friendly therapists. It's in my country, the woman sounds great who runs it.

But I'm too frightened and holding back to put my details, to look more into it. It's annoying.

Don't kick yourself. Anybody would think twice about replying. Got to be careful on the internet. Maybe you can look them up and make sure they're OK first. Or get a separate email so it's harder to trace.

Colin

IainEtc wrote:Don't kick yourself. Anybody would think twice about replying. Got to be careful on the internet. Maybe you can look them up and make sure they're OK first. Or get a separate email so it's harder to trace.

Colin

Also, it's hard to know who is looking and who isn't. There's things I've held back from posting b/c I don't want some people I know to know I am here and to find things I've not shared with them... there's a certain "safety" that comes from internet anonymity, but also an greater level of exposure from sharing on such a world-wide forum...

Being careful online is ALWAYS a priority- in ANYTHING you do, much less something sensitive and personal like stuff we talk about here.

My therapist thinks I am multiple, but I just took the DES and only scored a 23 (whew!) so I’m hoping she’s mistaken. Is it possible to have major ongoing daily abuse/trauma from age 6 months through age 23 and not develop DID? I hope so. I have some symptoms, such as big chunks of my childhood that I can’t remember well, I’m just so fuzzy on so many dates/events from my childhood. But after I left home (left my abuser), time became much more linear.

I have a couple of occasions where I heard another voice in my head and felt like I was “along for the ride” while the other voice soft of took charge, but they were very isolated incidents: it was once when I was injured, and once during a car accident (I don’t remember the accident, I just “came to” with the voice calmly assessing the situation and dealing with the emergency while I screamed in the background). But that might just but the normal levels of dissociation that everyone does under extreme duress.

I do have a problem where bruises will show up on my body and I don’t know how they got there. If I get injured, my brain sweeps all memory of it away instantly, it’s very frustrating, I wish my brain didn’t’ do that, I’m trying to train my brain to allow the memory of injuries to stay. But anyhoo, I don’t have most of the symptoms of alters: I don’t have anyone in my life I don’t recognize, there is no unfamiliar handwriting in any of my journals, my husband has lived with me for 13.5 years and other than occasionally claiming he told me something I don’t remember him telling me (I’m sure everyone experiences that, right?), he has never noticed any other “sides” of me.

Sometimes when something stressful happens, I will blank out immediately after it and not have a good memory of it afterwards. I’ve always found that frustrating because then I can’t remember the incident later, so I can’t troubleshoot how to improve it or make it go differently/better. But I’m assuming that must be a normal dissociative defensive mechanism, not a switching-to-an-alter episode. Because I also looked through the MID assessment and I don’t think I would score very high on that either. I don’t think I have DID. I don’t want to have DID — that would be a complicated life. And that frightens me — a lot!!

But I guess a part of me still worries. I had so much trauma, so much abuse, so young... (the doctor just discovered another fracture via x-ray and MRI, this time in my spine, from my abuse....it caused something called spondylolithesis grade 1...and I just found out from my cousin that she confirmed from my aunt it started before I was 1 years old...that confirms other evidence it started at 6 months old). So I guess if I had that much abuse between 6 months and 8 years and didn’t get DID....I’m very lucky.

51 for me.

I have done it online only a few times since the first time the docs had me do it... I've noticed it tends to vary over time. It's never a constant "I score X"... which I guess makes sense... some days are more troublesome or difficult than others, or some weeks are more difficult... So it stands to reason the level of dissociation would change a little, too.

I forget my original score, but it was up there, well into the dissociative range they said.

I used to find lots and lots of these tests and do them, then show my T. I dont do them anymore. my T showed me something about being online. she showed me the real deal and she showed me the online one. they are lots different. the scoring is different. they also aint going to tell me anything I dont already know. Im the one thats filling in the questions Im the one thats got the answers. not like the T is askme the questions, marking down my answers with the other stuff T's do too for tests. its just me filling in the answers and the website scoring what I said. if I wanted someone to judge what I say I would ask my momma, or my T or doctor who can really tell me what they think about my answers not some online bot that is scoring my answers by something someone else put online.

my T showed me too how these online tests tell everyone they have the mental disorder the test is about since they are on these sites that talk about mental disorders. We had lots of fun with this DES test, I got different scores every day for a week, I got 10 different scores taking it 10 times during the same therapy session, and I didnt change into anyone else neither.

I dont do no more tests online anymore. to me I feel they are garbage that causes people to get all stressed out about nothing. ever so often I take the real deal with my PDOC then they tell me the real scores.

Got an 87 today.

Andi (is it OK to call you just Andi?), how does the "real deal" differ from this version? Are you sure it was the same test? There are different tests, and there's also different versions of this test, like discussed above. I was dx'd with different test that covered different type of dissociation disorders, if I remember it correctly, but DES is used as a dx tool too. Professionals do the diagnosing, no one has said it wouldn't be so. If you have no clue what's going on with you, you're not gonna find it out by doing all tests there are, especially if you have DID. Your T is certainly right.

People with DID can score higher with positive symptoms of schizophrenia than people who are actually schizophrenic (lower in negative ones). Most or at least many people with DID have positive result having borderline personality. People with unorganized attachment style (common in people with DID) can score positive on both, avoidant and dependent personality disorder, although it's impossible to have both, because that means your behavior changes a lot in that area where it should be very permanent. Personality disorders are long term behavior patterns, so you can not have two opposite ones. It just means the test was wrong one for you, but online test can not tell you that. People with DID also score high many times if tested for bipolar. There are plenty of examples why you can't really diagnose yourself like that, and no one has claimed you could. Because of the same reasons, there are so many typical misdiagnoses before DID-dx, done by professionals too. You score high, because symptoms can match. It can take a lot of time before someone is able to see the big picture, the reason behind all the symptoms you can dx being something else too, many different disorders.

The test for DID can also fail badly. You view on your symptoms can change dramatically. Feelings when you are sure you made a mistake with having any problems and are actually healthy, are normal in DID, if you test yourself then, you may not recognize your symptoms. You may not know them, if you have present day amnesia, and especially so if you have amnesia of amnesia.

You also have to understand depression, anxiety, addictions, eating disorders, PTSD, body image problems etc can be symptoms inside DID. They may not be totally independent disorders you have with DID, but can also be part of DID.

Professional who sees you many times in diagnosing process can see a lot you are not aware of. So you're right. And of course if you give different answers when tested, you're gonna score differently. There would not be point in test that gives you the same result regardless of your answers. Same thing can happen with the professional tho, you can talk about things many different ways and give very different impression about what's going on with you. If you think you are bipolar, you talk about mood swings. You may also hear voices inside, but don't tell it because you know they are not real. To me it was a process to understand what all in me is symptoms, and I could communicate about what I have only after that. I didn't know something I thought was normal was something to tell.

Tests still aren't useless, that's why professionals use them too. They're just one tool, professional has reason to think patient has certain disorder, so they test them for that. If the test also gives positive result, they're gonna dx that. But it's based on their view, and like many of us know, DDs aren't well known at all, and that's why misdiagnoses are so common. Doctor in hospital wanted to label me as borderline patient, and she did, although needed to agree it can be misdiagnose because symptoms can also be DD, but she refused to test that.

I "diagnosed" myself before professionals and talked systematically about me having DD. It took years, but I was tested in the end, after misdiagnoses they admitted were probably misdiagnoses, like the hospital doctor and another one in a public mental health clinic where I had therapy for 3,5 years and after that few short periods. When I started in there, doctor said it sounds like it could be DID, but that it's so uncommon (not true) she won't diagnose that and dx'd personality disorder not specified instead. Test result for DD said OSDD, now I'm in proper therapy and also dx'd with DID. I would not be, if there wouldn't have been forum for people with trauma where I learned about structural dissociation and realized that it explains everything.

Your view of your symptoms has to be very vague, if it changes several times in an hour or so.

I don't like the test because it's so vague tho. I think there should be clear explanations what "all the time" or "sometimes" means. No one can have symptom of finding themselves in place they don't know how they get into and why all the time. It would mean every time you blink your eyes you're in a new place you don't know why and where you are in. I score pretty low (compared to many others in here), because I take the questions and answers literally. But it's not just that, it's also because parts in our system don't behave like that, they don't try to build their own outside life, and go outside the house as themselves, but rather hide themselves and when they've fronted, which is why it's rare I find any inconsistencies to realize I have missed time. I got to know they do come out without me being co-conscious about a year ago or after that.

There are still good questions, things to observe about yourself to understand how you're doing overall, and many people find it helpful to do the test every now and then. It can not be proofed score doesn't change because they feel they're having more symptoms, although don't, but answer differently because of feeling like that tho, but that's how it is to have DID, you can not be sure about things. The amount of symptoms does vary, so it can be true as well. I don't think it does any harm to do the test, as long as you understand it does not give you diagnose, or proof you don't have DID.

Diagnosing is hard, I don't envy the ones who do that for living. It would be great if there'd be a cheap brain scan method to see what you have or something similar. That's what vets at my work hope too sometimes, to have a machine you can put the patient in, and it prints out the diagnose.