new member hoping at least some of this is familiar

Hello all

I've been reading this forum for a while but not sure whether to post in this bit because I was told my a counsellor that although I dissociate, I don't have DID, but she mentioned integration and asked if I called the people 'alters'. I had big dissociative episodes in the sessions and that was when I first learnt the name of it.

She was the first counsellor I told that I have a lot of different people with names and ages and whole lives and any of them are around at any given moment. I've had it since I was really small, about six maybe, and for some reason knew not to tell anyone, thinking I was just a bit creative and too old to have 'imaginary friends'. But there's been hundreds of them over time and whoever me is has almost disappeared and I spend nearly all my time as someone else.

When someone talks to me they're talking to what they see, the outside shell, and I find it really draining trying to work out what I'm supposed to be saying, and it's a relief to be alone again and one or other of the people reappears and what I call normality returns. When someone calls me by my real name it feels really strange and like it's someone far away, but I have to answer to it. I really don't like my name or my surname although there's nothing wrong with them really, I just can't relate.

So I took the dissociative tests from the trauma centre in Norwich, england, and it came back with 'strongly suggests the presence of a dissociative disorder' and some figures for DID and DDNOS etc but I can't find online how to interpret them.

The doctors have generally said I have anxiety and depression and all they offered was CBT. I do have really bad agoraphobia and panic, but I've never thought depression is my main thing. So I'm going to take the test results to the doctor next week but I'm nervous what will happen, or if I'll be referred to some sort of 'cure' and my people will all disappear.

Several of them I'm really fond of and don't want to ever go away. There's a new set of shelves built behind me but F made them and I don't know for sure when they were put together, days feel like weeks. And having moved to a new place that needs decorating (I don't remember anything much about the move), E is picking the paint colours so they'll be a bit of a surprise when they get delivered. E is always around and has been for 20 years or so. There's probably about five or six people around every day at some time, others less often, and the rest appear or disappear over various times, some have been gone a long time.

I just live with whatever it is, but it is a bit of a pain sometimes not remembering things. And to me it seems there's not a lot of other things you can say it is. So I thought I'd post here for a start because I've never met anyone else with something similar.

Sorry if I've gone on a bit

Yes all of it sounds very familiar actually.
Welcome aboard, I hope you will find that competent therapist.

Yup sounds familiar to us too

Don't worry about them going, firstly it can take a long time and secondly, it may not happen. With us, they all said they were going to leave, we cried for 2 days because we didn't want to go on living without them. We begged and they realised that as much as they want to, and are ready to go, we wouldn't survive without them. They are still around, just a lot happier and peaceful. So things may not go how you expect - in time I'm sure your system will find a way to make thing work for all of you to be contecnt

And welcome (kids are waving to say hi)

Thank you both *waves back*

I suppose I wasn't sure if I was posting in the right place because I've been told that I make people up or I'm experimenting with different identities, or I invent someone to do something for me, when they don't really have anything much to do with me and live their own lives, even though it melds a bit with mine. Or they get described back to me as 'characters' (I don't think any of mine would like being called that).

It's something to do with me being able to talk about it, rather than be in it in therapy (they do slip in though when it's a bit silent) that they think I've deliberately made these people up, and that's what's causing the panic and agoraphobia, as if I'd rather be making people up than going out. But the agoraphobia is because I'm so fearful and panicky that going anywhere causes me trauma that lasts the rest of the day. The people appear spontaneously whenever and stay for decades sometimes.

When I was small I wasn't allowed to go out anywhere nor have any friends round, and my parents thought I was lazy and badly behaved, and my grandmother told me they said I was a 'wicked child'. My parents were either oppressive 'do this do that', overbearing, or left me alone in my room. I was really unhappy as a child but they were like a kind of stoney wall. They still don't give me emotional support but my mother is still involved in my life and I feel manipulated when I talk to her. I have to say what she wants to hear or she'll be upset. For a couple of days after I've spoken to her, F is aggressive and angry, because somehow although my mother was speaking to her daughter, F is taking it all in at the same time in some kind of parallel, and as soon as the phone's put down it's him talking about someone with the same name as my mother. That's why the counsellors said I was just making people up to help me. But I never made them, they appeared and I've lived with it. It's becoming a bit clearer now why this all started so young though.

I've probably not quite accepted what it is yet. If I have a system of sorts it's like a family tree, who knows who or is related to who. A few of them know me, so I'm in my own system if you like, and top of the tree dictating everything is F. Isn't that upside down? Or is there sometimes a very dominant one? I am the shell, but that feels like all it is.

collonges wrote:I suppose I wasn't sure if I was posting in the right place because I've been told that I make people up or I'm experimenting with different identities, or I invent someone to do something for me, when they don't really have anything much to do with me and live their own lives, even though it melds a bit with mine. Or they get described back to me as 'characters' (I don't think any of mine would like being called that).

I think a lot of us have been hit with one of those comments at some point! Doesn't make them true though. Definitely not.

When you say trauma centre in Norwich, do you mean The Pottergate? Is there any way of you having the full SCID-D done there? I'm not totally sure of your counsellors reasoning for you having alters, but not having DID. Also not sure if she is someone who is actually specialised to make those sorts of calls.

Just wondering really where you can go from here.

Hi! I'm new too. A lot of what you said sounded familiar!

collonges wrote:But there's been hundreds of them over time and whoever me is has almost disappeared and I spend nearly all my time as someone else.

Nice to hear that I'm not the only one like this! My "alters" (I don't find the word comfortable) come and go as well, and are not so clear-cut. For instance, I think sometimes the same persona (I've called them that to myself, not meaning a fake persona) comes back years later in a different form. The essence is the same, but backstory and appearance are different (most of them don't have names).

collonges wrote:When someone talks to me they're talking to what they see, the outside shell, and I find it really draining trying to work out what I'm supposed to be saying, and it's a relief to be alone again and one or other of the people reappears and what I call normality returns.

Same here. I find socializing draining anyway, and it doesn't help when I have contradicting feelings of what I am, what I like, what is my opinion etc Usually it's me ("world", as pompous as it sounds But I'm the world of my personas) and some persona on the surface "working together", but not always in harmony...

collonges wrote:When someone calls me by my real name it feels really strange and like it's someone far away, but I have to answer to it. I really don't like my name or my surname although there's nothing wrong with them really, I just can't relate.

I changed my name for this reason I took the name of one of my "better" personas (and one of the very few that have always had a clear name). She makes me happy and hopeful, and I could use more of that...

Well, I wish you strength in your struggles and all the best!

collonges wrote:It's something to do with me being able to talk about it, rather than be in it in therapy (they do slip in though when it's a bit silent) that they think I've deliberately made these people up

That reflects their own fear and denial, nothing more. Just because they think that about you, doesn't make it so.

I got a similar reaction from my first therapist. In the intake session I held nothing back; I gave an outline of my long list of strange experiences: possession states, hearing voices, seeing things (both visual hallucinations and intrusive mental images), losing time, people I don't know who say they know me, odd sensations in my body, emotions that were "not me", and even my awareness of having two parallel careers almost as if I were two different people. I knew nothing about DID and had no idea if they were all related, but I figured I would bring all this data to the professional and let the professional sort it out.

My therapist played it cool. Months later he admitted he had recognized immediately that I was describing symptoms of DID but he was really struggling to believe it. After all, patients with DID were "supposed" to be unaware. Right? No. Usually we are aware of a lot that is going on; we just haven't put it all together.

collonges wrote:Hello all
So I took the dissociative tests from the trauma centre in Norwich, england, and it came back with 'strongly suggests the presence of a dissociative disorder' and some figures for DID and DDNOS etc but I can't find online how to interpret them.

If it is the DES or SDQ-?? (can't remember the number right now) you can email the Pottergate Centre and they will score them for you. When they send back the scores there should be a guide with it.
When we took the DES our scores were consistant with scores usually seen in ppl with DD-NOS.
However when we went to sit the SCID-D we were diagnosed with DID instead. So don't worry too much about the scores. These things vary.

I can tell you one thing though: the normal (adult) population scores around 8 points on the DES. Teenagers will score somewhat higher (I think their scores tend to be in the teens hehe if memory serves)

If self-assessment surveys come out as "strongly suggests" and you're seeking certainty, the next step would be to sit the SCID-D. That's what we did (in the end).


and yes. Very familiar.

Found the chart I was thinking of (statistics on how different patient groups score on tthe SDQ-20 [Pottergate will send you one if it's not the one you've already done]): http://i952.photobucket.com/albums/ae7/ ... echart.png

Don't have any details on typical DES scores though, although I am pretty sure about the "normal controls" score details I stated in my post above though I don't recall the source. Haunted Self maybe? You can call me president Not Sure.

bourbon wrote:I think a lot of us have been hit with one of those comments at some point! Doesn't make them true though. Definitely not.

When you say trauma centre in Norwich, do you mean The Pottergate? Is there any way of you having the full SCID-D done there? I'm not totally sure of your counsellors reasoning for you having alters, but not having DID. Also not sure if she is someone who is actually specialised to make those sorts of calls.

Just wondering really where you can go from here.

Hi Bourbon, yes I requested the screening from the pottergate centre and she sent me back the results.

My counsellor said she wasn't qualified enough to be authoritative, but at least she alerted me to the dissociative bit when I hadn't been told that before. I'm glad I trusted her enough to talk to her about it, but when she asked about alters that was a few sessions after she said she didn't think I had DID so she might have wondered if it was that. But she was frustrated I wasn't getting the help I needed so I looked on the MIND website what was available and found a link to the pottergate test.

First thing is to see the doctor, but I get the impression it's not easy to get help. Even the MIND site said you have to be persistent.