October 25, 2010

Disassociative Identity Disorder (DID)

I know, even before I complete the first sentence, that I am going to offend some people so, I guess, this is my apologetic introduction. I am going to write, admittedly, about a subject I know very little about and it's from that perspective that, I believe, a lot of other people share my confusion. Maybe some of the responses will go some way in clearing that up - maybe not. In any event, here goes...

A few weeks ago a fellow colleague and I were invited to a meeting to discuss an upcoming event. Neither of us knew the other members personally and I had never met any beforehand. All I knew was we were a group of women with two common causes: we were all sex abuse survivors and wanted to do something about it. The only true expectation I brought with me however, was the assumption that all who attended were well enough within themselves to be able to push a group out and onto the national stage and capable of creating an easier environment for those who might like to follow. Aside from that, I had no idea what the format would be, who would lead the discussions, what the protocol was or even if there was one. I did note that three psychotherapists were attending which, initially caused a little anxiety - I was worried some of my own issues would surface and I'd need to see one of them on a more private basis.  

A lot of things happened in the two nights we stayed together but one specifically stood out: Dis-associative Identity Disorder (DID) and the fact that one therapist had brought along quite a few of her own personal clients. They were also this Group's board and/or Trustee members. Now in here, lies two problems, for me anyhow. One being that these women may not have been well enough to deal with the issues we needed to address (some proved that point) and the other was, just where those boundaries are between a therapist and client. The latter is another issue I will discuss later. For now, I would like to talk about DID.

Now, immediately, I have an issue with this. I hate the word: Disorder. To me, it implies something being out of order, broken, or not where it should be. A lot of people diagnosed with DID would probably feel the same. Labels are, after all, a rather crude short-cut into a persona. So I initially went on the defence about this but only on that one shallow level - bloody labels. However, if I were to push the envelope a little further, I would also have to agree that if something was 'out of order,' identified as such, then it would automatically assume "it" could be put back into order, fixed, if you like. On that basis, maybe DID is a temporary state and ought to be treated as such.

So what would someone make of these women, for example, being in that "temporary state" for several years? Is this a reflection of the therapy they're having or...god forbid...an excuse to remain unwell? I know, it's a harsh accusation but one, if you will, I will work through - who knows where this will end up? 

So okay, they've been diagnosed, if you will, with DID. They have no qualms about addressing their multiple personalities as such, in public, in full view, and with the expectation that those, like me, accept this as completely normal. And that is where I stood out. I did not accept it as "normal".

To me, there is a disassociating and then there is this DID. The first one is removing one's self from a situation that is dangerous, even if those situations are flashbacks, memories, nightmares - talking in third person about events that were traumatic, in my view, is not only disassociation but a vital survival tool. It enables some sex abuse survivors, for example, to be able to give evidence without completely falling to pieces in the process. It's hard to be a good witness in an example like that - having to keep your head on your shoulders while the inside of you crumbles in despair. So yes, disassociating is vital. It stops the brain from overloading but you don't have to have been sexually abused to do this - we all do it. Days when you've found yourself at work and have no real idea of whether those traffic lights you drove through were really green or even tapping (unconsciously) to background music. But it doesn't mean you have a "disorder." It just means your brain constantly siphons incoming data and thank goodness it does - no one could survive the complete influx of information available. It's impossible.

However DID is different. It takes this disassociation one step further - it "identifies" those times when you're not conscious and names them. That, in itself, is not a bad thing. What I think is a little dangerous is when those identities are not only named but are given a completely independent status. For example, when someone acts out, maybe even gets abusive, that behaviour is simply blamed on another "identity." It wasn't Mary Jane, just her outer ego, if you will. Wouldn't life be grand if we could all blame someone/something else for what we did? That's my point. I don't think that's right. 

Like I said, I don't know terribly much about the intricate nature of this so-called "disorder" but even from a linguistic point of view - how can you "identify" with something you have "disassociated" from? If you have removed yourself (disassociated) then how on earth can you even identify it let alone give it a name, a personality, and shit loads of responsibility? Isn't that just using something/someone else as an excuse? 

One of the members of this group stood to introduce herself and ...her kids. I was stunned. There were no kids. Not that I could see. Not of the physical kind anyhow. "I am referring to my kids inside," she explained, pointing to her chest. I scanned the room looking for the other person who looked even mildly confused but there either wasn't any or I didn't look hard enough. I bit my tongue. Later that evening, one of those "kids" asked for permission to go to sleep. The therapist assured her she could. Aside from the rather unnerving nature of that, I was constantly confused as to who I was addressing at any given time - her or any one of the several "kids" she had. It seemed to me that any time someone disagreed with her, another personality would pop up and confront the issue before the "real" her returned to apologise for the "naughty inner child." 

Oh please! This surely is an insult to those who have DID - those who have absolutely no recollection of what they've done, like there has been a 100% takeover of that person's being and they, for one, remain the most confused out of everyone. Isn't that really what disassociation means - not knowing? What's to stop anyone who behaves badly, even dangerously, just shrugging their shoulders and blaming some other identity? Isn't it about accepting every part of all those personalities as YOURS and learning ways in which you can live, peacefully, with them all? I mean, what would people say to a child rapist that said" "Oh yeah, sorry about that. That's Geoff, my other personality. He does that sort of shit to kids. I don't though." Would we really be tip-toeing so much around this issue, this label, is it were paedophiles who wore it? 

Footnote:
I am no clearer on this topic than when I started. However, a friend recently suggested he had "Intermittent Explosive Disorder." WTF? Isn't that just being pissed off albeit intermittently? Do we really need a disorder for everything?

19 comments:

  1. I have no particular thoughts about your experiences re DID (though I really hope someone who knows more than you or I pitches in), but I wanted to say that I too have felt discomfort about the group you mention and the organisers. I have been personally traumatised by my own interactions with them. There seems to be no accountability and very little safety for those who need it most. Thank you for bringing it up.

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  2. I made a specific point of not mentioning the group because the intentions behind the group are phenomenal. However, I can only assume you were there as well by the comment you made. I am sorry you felt "personally traumatised" by your experience with "them". That is a very serious issue indeed. Thankfully, I was not as traumatised just quite mystified and sceptical. Thank you for posting. If you do feel like talking to someone (in total confidence) feel free to email me (details above) and I can personally recommend someone. Arohanui.

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  3. Have been told its dissociative not disassociated... interesting feedback on Facebook. Thanks guys.

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  4. Well, I have worked in mental health for my entire career - 25 years and have only ever met one person with DID - He was a male, no memory of his 'others'. True DID is as rare as hens teeth in my humble opinion.
    I would have felt most uncomfortable with the process described above and am with grave concerns for the board of any survivor organisation being made up of the 'survivor' therapists client group current and past. There are clear ethical breaches here for both NZAP and NZAC and I would urge concerned people to make contact with those organisations and start a complaint process.
    This survivors organisation now has a nationwide membership and all members should have received post delivered hard copy nomination and voting forms to ensure all areas were represented in the election of the trust board.
    There is seperation of 'trustees', 'Board' and 'members' into three catagories. This practice is unheard of. If you are a trustee, you are on the board.
    I feel very angy about all of this as a member who has encouraged other survivors to join....it turns out the organisation is unsafe for survivors.

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  5. Well I hear what your saying. I am going to discuss this matter with a good friend and decide whether or not to publish a story about this.... I personally don't give a shit about offending the powers that be but I remain a Board member at this Organisation and I think now is a good time to rethink that. Thank you for your honesty and your courage to address this matter - bets those who have merely taken to sending character attacks via email -cowards!

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  6. It is important to remember that DID is a recognised and accepted diagnosis in the DSM-IV and there are many with genuine DID presentations. It becomes very difficult for those clients and therapists to get any understanding and true acceptance when other therapists dish out the diagnosis when it clearly is not appropriate.

    There is a quote from wikipedia (because that must be gospel LOL) which says it quite well I think....
    (Some) “believe that the symptoms of DID are created iatrogenically by therapists using certain treatment techniques with suggestible patients, but this idea is not universally accepted. Skeptics have observed that a small number of therapists are responsible for diagnosing the majority of individuals with DID"......... "and the alternative explanation of the "alters" being rule-governed social roles rather than separate personalities.”

    It’s such a shame that this all happened with therapists who call themselves ‘experts’ in DID because clearly they aren’t and it brings an unfair shadow over those with genuine DID.
    Like the above post, I have not professionally come across anyone with the DID diagnosis in my 15 years of working in the mental health field. I have however, come to know a couple of people personally in recent years who definitely seem to fit the diagnosis in its genuine form. Though I do agree, for the most part true DID is rare whereas 'dissociation' (outside of DID) is much more common and generally more what we see resulting from child sexual abuse.

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  7. Hey thanks for your replies people.

    I have received some rather "terse" personal emails from those who have been diagnosed with DID as they think I should have got some "professional" opinions on the matter before speaking about it.

    And there may be some merit in that.

    However, my experience, as written, was in the presence of what some (a lot in fact) consider to be a "leading" counsellor in the field of DID.

    As I stated, I do believe there some people with DID otherwise it would not even be listed under the DSM-IV listing and I am very interested to hear from those people so as to gain a better understanding of the diagnoses myself - and for those who read this blog.

    However, I are not so sure that those who are clients of the counsellor in question have enough inner strength within themselves to do anything else but defend their counsellor, her diagnosis of them, and by default, her actions.

    And that (and that alone) is what I found (rightfully) questionable.

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  8. whatevauwannacallmeOctober 26, 2010 at 7:34 PM

    This really makes no sense to me... This just doesn't seem right. This whole meeting sounds a little suspect and not really helpful. DID sounds a little like any DIS-ORDER... Borderline Personality Disorder for instance. This label is now placed upon just about anyone who has a few of the criteria in those stupid books of symptoms. Just handing out labels like that really isn't right but it is done a hell of a lot more these days. Makes me sick. I know these people went through a hell of a lot, As I have too. This doesn't take that away. A label from a therapist won't make it go away and neither will sitting on a few symptoms saying, yes, that's what I have. Truth being everyone can probably pick up that book and say "wow I have this and that and this..." Ridiculous. And yeah I am blabbering and probably not making any sense but hey... whatever.

    I have only met one person with DID and he had no idea. Clueless. Just lost time. These other ones you speak of(just from what I have read here) seem to be using the diagnosis as a reason to behave a particular way without consequence? Or maybe they want attention especially from the therapists? Or maybe they really are knowing what they are doing and can't help it? Maybe I am completely wrong and someone can fill me in?

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  9. whatevayouwannacallmeOctober 26, 2010 at 10:07 PM

    On a website... as you probably have already read...

    People who may benefit either emotionally or legally from having DID sometimes pretend to have it, as with those who molest children, have antisocial personality disorder, or in cases of Munchausen's syndrome.

    Some researchers are of the opinion that sex offenders who truly suffer from DID are best identified using a structured interview.

    http://www.medicinenet.com/dissociative_identity_disorder/page5.htm

    So it could be possible for people to use these "others" to blame for their own mistakes, or to get away from consequence. It does and can happen.

    Is this an actual real mental illness? Well probably but very rare. Very.

    As I looked through the symptoms I saw a lot of myself in them, as I would in almost any of these personality disorders. I could write a whole list of other people who could fit the criteria and probably be diagnosed with a lot of these labels. If I took them to see a psychiatrist, no doubt they'd probably be diagnosed with something.

    Don't get me wrong, these people at this meeting you were at could be genuinely thinking they have this. Be it from the power of the therapist's suggestion or because the symptoms are so real to them. I don't really know for sure as I am not them. But...

    Because it is so possible to just blurt something out and say, "oh sorry I told Jim not to do that anymore" it's like not taking responsibility. You'd think if these people at the meeting were actually able to know what happened and what DID is, surely they'd know by now that all these alters are actually just one person? Wouldn't they have been taught that by their therapists?

    Also these people clearly were not ready to be at a thing like this if this is what was going on. And those professionals that were there should have picked up on that straight away.

    I feel sorry for the clients who were brought into that atmosphere when really they shouldn't have been.

    It feels wrong to me. Just a vibe I have, but I think it should be looked into. It has that professionalism out the window kind of feel. A creepy sensation crawling up my back telling me something isn't right.

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  10. Nope. What you wrote makes perfect sense to me "whatevauwannacallme" Thank you.

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  11. I write this comment, knowing it's a no-win situation. The opinions, arguments and confusion raised here are nothing new. I know that there is great skepticism about DID, which makes it so much fun to be diagnosed with it - it's amazing how mental health professionals react when seeing the diagnosis on my file.

    So yes, I've been diagnosed as experiencing DID. Sometimes I lose time, sometimes great chunks of time. Everything that I do while dissociated, is my responsibility.

    I know I can't convince anyone that DID is a valid diagnosis. It's also not up to me to justify being diagnosed with it. There are however, copious amounts of information about DID which look at it from the "DID has it's origins in trauma" theory, and from the "DID is a therapeutic construct" theory. Feel free to research both - you may want to check out criminal resposibility and the dissociative disorders at the same time.

    I can't respond to the situation described at the weekend, because I wasn't there. If you are concerned about it, there are ways that it can be addressed.

    Regards,
    castorgirl

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  12. Thanks for that Castorgirl.

    I appreciate your comment especially as you have been diagnosed with DID. You're right, it is hard for people, like me, to get their heads around this one. That doesn't mean to say it isn't valid and/or isn't real.

    As the above blog states, that was my first ever experience with anyone even associated with DID and a lot of people found it not only unnerving but quite insulting to those with, what I would consider, a genuine diagnosis.

    I am more pissed off with the so-called professionals in this case because it's people like that, that make ACC feel justified in their attempt to cut counselling - on the grounds of co-dependency issues for one.

    There are several other reasons why I would see ACC having an issue with the above mentioned client/therapist relationship and I, for one, really hate it when you struggle against the likes of that organisation for survivor rights and respect, and they can throw up an example (like above) which leave me hanging really high and dry on the whole argument side of things. Grrrr.

    I'd hate to even think what the reaction NZAP and NZAC would be!

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  13. whatevayouwannacallmeOctober 27, 2010 at 8:51 PM

    I'm definitely going to look more into DID and research it some more to get a better understanding. Castorgirl has been helpful here. From what I have seen, the questions I have are not easily answered... it's very complicated isn't it? It is good to have someone diagnosed comment on here. Helpful.

    NZAP and NZAC reaction to this whole thing would be interesting.

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  14. You admittedly said you knew little about DID and your impressions were just that. Wouldn't it be nice if you took some time to learn a bit about it. Anyone with DID became so by age 6-9. When it becomes known (when the amnesia erodes that kept all the abuse secrets), the personal is usually an adult at least in their 30s.

    DID is very treatable but therapy is long lasting. One can be functioning and fine in social settings and even working at a very productive level after several years of therapy. Most on the far side of healing have been in therapy 10+ years.

    It is confusing when someone is in early healing. But the person is not "out of order". Their childhood coping skill is now interfering with adulthood. It's an adjustment. Maybe more education and compassion would help.
    forbiddentopic.blogspot.com

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  15. Hi Grace

    My blog, unlike yours, is not specifically about DID - nor is my website and/or profession.

    I brought this topic up in order for it to be discussed, thrashed about, understood more etc.

    Like I said, I am not a professional. I believe I made myself quite clear from the onset. It doesn't mean, however, that I cannot initiate a discussion about this.

    If I come from a naive perspective about this very subject, it is because I am expressing the viewpoint of a lot of people - the general public, the sceptics, the person who has no idea what this is all about, the prospective DID person, the ACC witch-hunters, the psychotherapists/counsellors who have never come across a single case, those that have been diagnosed with DID....the list goes on.

    It is not possible for me to become an expert on every possible topic raised on my blog. I can do what I do..... ask the question and see what answers pop up.

    As a "psychotherapist" I would have thought you'd understand that better than anyone.

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  16. I wasn't at the event you mention but from what you have written I'm pretty sure I'm a member of the group you're talking about. Separation of board, trustees and members, blurring of boundaries between therapists and survivors, and little account taken of survivors' safety (I was outed in a group email, for example, where my personal details were shared). If we are indeed talking about the same group, I really want to share my concerns but it's a small world and I've run out of fight after the last year with ACC :(

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  17. Hi Anon,

    Yes I do think we're talking about the same group. That is, in fact, there still is a group.

    Since 'that' meeting and expressing my concerns,there have been five board/trustee resignations.

    Another meeting is due to be held - a million miles away - (funnily enough)to discuss matters I raised and to..ahem..sort out problems. I personally think I am regarded as one of the latter. Since the initial flurry of emails following 'that' infamous meeting, I have had only one person contact me - and that was to tell me there was a Board meeting, practicably, in Timbuktu, and would I like to attend.

    PMSL..not sure if I could refuel my broomstick for such a long trip.

    Having said all that, the one person who was not at the meeting but who is trying to get the group "back on track" is, in my view the absolute reason behind why a group, such as this, needed to be made in the first place. Yes, she is a survivor but no, she does not tolerate fools gladly. For that reason alone, I hold a little bit of hope.

    I am, however, deeply saddened that the one and only professional psychotherapist who did attend the meeting, handed in her resignation only a few days ago. Sad because I will miss her input, her genuine sense of purpose, and her strict adherence to guidelines.

    I will wait and see what the outcome of this next meeting is - primarily to be told who remains on the Board etc. The answer to that will determine whether I remain myself.

    Feel free to email me on nzreporter@hotmail.com

    Jacquie

    PS:
    What fucking arsewipes outing you about anything in a frigging email. Makes my blood boil when one of the most damaging aspects of sex abuse is the loss of trust and our own, supposed, sisters flog the very thing that takes years to rebuild. Oh, I'm livid!

    PPS: Excuse my tourettes.

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  18. Hi

    I am one of the people spoken about at this meeting and probably one of the cowards who emailed you Jax, but I did so as a friend and because I trusted you with info I told you and felt a little betrayed. but reading the blogs I am perturbed about how people don't understand DID and although I fought with this diagnosed and remained undiagnosed of it by a well know respected psychiatrist for almost 2 years because of this stigma and lack of understanding in society. Now I am determined to give a vioce to all in my shoes because I am sick of hiding it just like I had to hide the abuse, I finally get to know the full extent of my abuse and have to keep it a secret too. It just carries on the silence and I really don't care if you wanna believe me or not. I know that I know my truth. I want to share my story on here of my experience in this group but I'm not very good in writing in short form. Afraid of waffling and not making much sense I wonder Jax if you would like me to share and have the time to help me put a well written expose and writing what I want in it then let me know. Otherwise it could take me a while to respond to all of this as since this meeting I have become messy after being well and functional for 2 year. But its all good as now I am actually dealing with what I should have been dealing with in therapy. I still get shocked how the rest of me can recognise an unsafe environment or person to tell their stuff to when I cannot. Jax if you can be patient with me and have the time to help me write a peice for your blog I am willing to. I want to do this because I hope to help you and others on here to understand DID a bit better and be a voice for those who have no voice and stay in hiding.

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  19. Hi bluebutterfly49,

    You may not be aware, but there's quite a survivor blogging community that includes many people diagnosed with DID. Most are overseas, but they all offer different insights into what it's like to live with a dissociative disorder. If you haven't checked them out, they might be a good way to ease some of the stigma you're feeling. A couple of good blogs that I often visit are Mind Parts (http://www.mindparts.org/) and Dissociative Living (http://www.healthyplace.com/blogs/dissociativeliving/). Both are written by Americans, but have some great information on living and healing. Neither are therapists, but survivors like you and me.

    I can empathise with the confusion different ones in the system can feel regarding what is safe to share, and when. Boundaries are such a huge issue for any survivor, and our filters are often not around when we need them. This is why grounding is so important...

    I'm sorry your struggling... please take care.
    CG

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