Answering the Question: “What is DID?” in 200 Words or Less

Stereotypes of DID abound on the internet. Most copy info from the DSM 300.14, mention the stereotypical movies, and then make some sort of comment, assumption, or question that shows they tried to understand a little, but not enough.

I read about a woman with a bipolar child, IRCC. When “concerned people” make comments about her parenting, she hands them a card that answers basic questions. What is bipolar. How yelling at the child is the wrong thing. Explaining that her reaction to the child’s behavior is appropriate in this situation.

Can we do the same for DID?

[Note: please do not search the internet for “What is DID” to answer this question.  Do it yourself…we need to define this ourselves.  The internet is full of CRAP!  I will rip it up in another post.]

I find myself leaving comments on websites and blogs asking the authors, respectfully, to reconsider their thoughts, or to visit my site for more information. (Or in this case, to completely remove the post.) Some ignore me, some visit my site, and some actually follow up with a comment or question. Occasionally, good does comes of it.

There is intelligent life out there.

<Pah. About 4 percent.>

But I am tired of being a one-woman champion for DID on the internet. No, I know many of you do, because I see your comments out there as well. Sometimes we all must feel it. But I find myself typing nearly the same thing over and over. I could say fck it, but something compels me at times.

I’d like to offer a more realistic response – something that isn’t the sterile definition no one really understands. Something that can bring it home for them…personalizing the most “unbelievable” symptoms in the DSM. Something digestible for the typical short-attention-span armchair expert.

<Yo dudes, you know that totally cool aunt you have??? Wellll, surprise!>

Kinda like the comparison I wrote about before in my comparison of DID and Schizophrenia – real examples bring it home.

[S]chizophrenics experience psychotic forms of intrusion (e.g., “John Ashcroft is implanting his thoughts in my head.”), whereas dissociative patients experience nonpsychotic intrusions (e.g., “Sometimes I have thoughts that do not feel like they are mine.”).

I think this is much more illustrative than “voice outside of head” vs. “voices inside head.”

Something that helps dispel the movie myths. Written concisely, and in a way that educates at a common level; that promotes acceptance and respect for us.

<Fck me, wanna go for World Peace while we’re at it?>

Shut up. I’m serious. And you know it’s something Emily wants.

Why Bother?

The thought came to me today after I’d commented on several websites and despaired of ever being fully accepted in society. Gudrun at one point suggested I turn one of my posts about finding a therapist into a pamphlet. That blew me away and honored me. That’s been in the back of my mind to consider, and maybe this will give me the push to do something like that. That maybe I can bring my words and feelings a step further out into the world – to give us a unified voice on at least one issue.

Maybe create a website dedicated to understanding DID (with those pamphlets), but from our side, and not the clinicians’ side.

Too grandiose? Who the hell knows. Or cares at this point.

Someone in here wants to Give to the World and help us at the same time.

Who am I to stop her?

My question to you

I want to gather our thoughts, and produce a short treatise at the average 6th grade reading level we can point to…”Here is DID.” Or some catchy title. We are here, we are around you, we are “normal.”

<Yo folks, Deal with it. As per cool Jackie, Stop Being a PIMA.>

Obviously, Kate will not be part of the program.

<You know, *assumes authoritarian stance* humor is a common denominator in breaking down barriers and addressing hard topics.>

Sigh. Yes, you are right. King is the perfect example.

But here is a sample of what I found myself writing a couple times today…

“I am saddened that you see DID as something “fashionable” based on seeing a movie. Movies hurt us because they stereotype. DID is not a disease. We are not mentally disturbed. We are not in mental institutions hurting others. We are generally high functioning people with good jobs, families, etc. If you met me, you’d never know. If you knew me well, you’d think I had some very different “moods.” Only my closest friends and family know what is going on. It isn’t like the TV shows. We aren’t freaks. Just regular people with some not-so-regular pasts.

“If you are interested, visit my blog – I present researched information, my own experiences, and comments on the mental health world in general. If you have questions, please ask.”

So give it to me…

If you were to run across one of these genuine but sophomoric posts on the internet and wanted to respond in a way that might actually mean something, what do you think is important to say? How would you say it concisely? How could you make it personal to them…something that hits home…without referring to the stereotypical highway hypnosis comparison? Is this possible?

<Hey, just give ’em the link to the Herschel Walker BS. And didja know that there was no follow-up to his initial marketing hype, so the book previously priced at $20.95 is now $2.99?>

Please, let’s not digress into that discussion here.

I know a couple of you already have your ways of sharing with others. Is there a universal element? How do they react? Would a stranger react the same way?

I will take everyone’s suggestions and see if I can generate something we could all agree on. If you thing it is worthwhile, or even possible. Yikes!

– ∞ –

See also:

Table of Contents for all blog posts

Survey Results: Do you have a cover diagnosis for your dissociation diagnosis?

“Let’s pretend” – a First Step in “I” becoming “We”

Calling All Clients and Therapists – BTC Survey Results Pt 1!

Believing the first 4/6 of the Dissociative Spectrum, but not the rest

Review: INSiDE short film

Dear Ms. DID: Is someone with DID psychotic, a neurotic, or just mentally unfit?

Review: “What is Dissociative Identity Disorder / Multiple Personality Disorder” from Empty Memories

What’s going on in the brain with DID? Biological markers in DID

Should I tell my spouse I have DID?

Review: Interview with Valerie Wolf – “Dissociation is the most creative coping skill that I have ever seen”

Flame-Quenching “Move Along” Standard Disclaimer

Guest Book and Introductions


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24 Comments»

  asrais wrote @

I have a google alert on DID, dissociation, mpd and the like. I find myself reading things that are not true and trying to comment. But so many places require your “sign up” for a user name via their site, and it’s frustrating. I don’t want to belong. I just want to slap this idiot upside the head. There were two today. So I didn’t comment becuase I don’t have the desire to have yet another user account on a site I’ll never visit again.

  davidrochester wrote @

I think this is a great idea. It really is difficult to explain DID accurately in any simple way, but I’ll think about this. There is a way I often use to explain it, but I don’ t know how effective it is.

  Jackie wrote @

You said it perfectly.

It isn’t like the TV shows. We aren’t freaks. Just regular people with some not-so-regular pasts.

I’ve only tried to explain myself a handful of times. I’ve been trying to keep a lid on the jars and the jars on the shelves for for a very, VERY long time. And look how well that’s been working!!!

  Jackie wrote @

How do you have google send you those alerts asrais?

  castorgirl wrote @

This entry has got a bit of an internal argument happening – don’t you just love it when that happens! On one hand, there is the desire, as asrias says to “slap … [this] … idiot upside the head” and lay out the truth of our experiences. On the other hand, there is the argument … ok there was another argument, but it got swamped by wanting to slap people upside the head for believing stereotypes. We’re pacifists, so no actual upside slapping of people would occur no matter how much we may want to 🙂

People are comfortable with stereotypes. We’re librarians. Librarians are stereotypically old, have grey hair, like silence, love cats and chocolate. We’re young(ish), have tattoos, ride motorbikes, have a forklift licence, need noise and are allergic to chocolate (how cruel is that).

The stereotype and misunderstandings around DID are just like all other stereotypes – they fit about 5% of that population.

All stereotypes and generalisations focus on the negatives and rarely the positives. DID meant that we could complete university to post-graduate level, work full-time, pay taxes etc. If we hadn’t developed the coping mechanism of dissociation in the face of such adversity, we wouldn’t have been able to achieve half of that.

Do others need to know what those adversities were – No.
Do people need to respect that everyone copes and reacts differently to adversity – Yes.
Will this happen in our life-time – sadly No.

Please do the pamphlet… any form of education and awareness that questions stereotypes is a positive move.
Sorry we’re not good at writing or else we’d try the summary idea to help.

Take care….

  davidrochester wrote @

OK — this is 300 words, but it was the best I could do. It was really difficult to come up with something that wasn’t so referential to DID that it was incomprehensible, but which was also universally true for everyone with DID.
*wiping sweat from brow*

DID isn’t hereditary or genetic; it’s not caused by imbalanced brain chemistry. Nobody is born with DID – it’s a very complex stress disorder, a direct result of events in a person’s life. DID is a way for the brain to survive intolerable stress and suffering, which it does by compartmentalizing certain experiences so that they don’t become overwhelming.

Rather than having a fluid continuum of memory and experience, people with DID have internal protective walls that keep pain or fear in its own space so it doesn’t interfere too much with everyday life. This allows the person to function, but also limits access to and understanding of experience, so it doesn’t get processed or released — it remains stuck, and feel s so separated that it seems to have happened to someone else.

Personality traits and emotions that were present at the time of the trauma often stay connected to the compartmentalized experience, and become what we call “alters” – this is often misperceived and misportrayed as being a different personality, but in truth, an alter is a personality fragment that holds memory or experience in a separated state. DID becomes problematic because the compartmentalization of experience and emotion mean that someone with DID doesn’t always have full access to everything they know, or to their entire personality.

As with any complex stress disorder, current events reminiscent of past trauma can trigger episodes of painful memory. For someone with DID, these episodes are particularly challenging because those painful thoughts and emotions are so well-protected; rediscovering them feels as though the mind is being taken over by someone else. Learning to consciously rediscover protected memory and emotion, rather than being overtaken by it, and learning to actively process and heal trauma, are the goals of DID therapy.

  castorgirl wrote @

Well said David…
With your permission, can I send this to our therapist? I’m not quite sure she fully understands what we experience.
Take care…

  David Rochester wrote @

Castorgirl — Yes, of course you can.

  Jackie wrote @

Ok I gave it a crack. My room temperature is not as elevated as David’s or as eloquent as all ya’ll….BUT I kept it to under 200 words. 174 to be exact.

DID is what regular people with not so regular pasts are. The irregular trauma in people with DID pasts was intensely debilitating mentally. So people with DID, lock up those emotions and memories from trauma, in a safe fortress in our minds, so we can continue to function in society. Those locked away emotions and traumas are called alters or fragments of memory, or sometimes splitting. Alters, or fragments, become problematic as the person with DID ages mentally, and then experiences something stressful, which reminds us in someway of that locked away trauma. This is called triggering. Like a trigger on a gun, it engages the past and the present emotional maturities to collide. This is often referred to as a meltdown, or breakdown. Much like guns are used in wars, special medical professionals assist people with DID to merge their past and their present emotions and memories. This is called integrating. Integrating is usually a very long and difficult process for people with DID, which requires patience and understanding from the entire community.

Now what I really think is to put in the ad or whatever this is for:

HEY, YOU. Cut me some slack and stop being a PIMA. I’m not a fruit, I just dropped some out of my basket. But I’m dealin’ the best I can, so lighten up ‘eh ! I’m just bruised not broken.

  Emily’s Camigwen wrote @

Everyone – good stuff so far. I am wandering around the internet too. I think this is going to have to percolate in my head for a bit – it is a tough topic, and I am also realizing that each of us come to this with different perspectives, and also different experience levels – how long you have been dealing with this, and how far in therapy you are.. And, I have been switchy lately and some parts of me have very little tolerance for managing this blog – oh, the irony. 😛

Keep it coming!

  Emily’s Camigwen wrote @

Echo wrote a sample on her blog – I just want to capture the link here so *I* remember it too!

http://ceruleanechoes.com/2008/11/29/did-in-200-words/

  vanilla wrote @

Explaining your world to us “vanilla’s” (non DID’s) in 200 words or less is doing yourselves an injustice.

To explain the way you view/perceive the environment you live in, your experiences that have formed you and your internal systems to those who have a different internal architecture is like trying to explain the colour blue to someone who has never seen.

The brief insights and glimpses of your world I have gained through those that I share my life with tell me that I am ill equiped to really comprehend your world and to truely do so would probably completely frazzle me! I am a mere mortal-there is only one of me.

I observe and I understand from my own perspective but not yours. To define DID in its clinical sense for vanillas to comprehend roughly why and how, maybe be achievable in a few 100 words. But with that definition comes no understanding.

I would ask the question does DID define you or does the lack of undersatnding of DID by us vanillas define you? I would hope its neither. You are who you are and you do not have to justify yourselves to anyone. The philosophy I try and promote here is “You are a team, work together you can do great things. Be proud of who you are”

  Echo wrote @

Thank you. I’d meant to come over here and mention the post and I forgot!

  Emily’s Camigwen wrote @

Hi Vanilla

You make a good point – why do we care what the vanilla’s think? Just be proud of ourselves?

You remind me of a comment I left the other day on Cat’s blog in response to her comment about my Baby Talk and Fakers post. She said,

I am very good at telling those around me about the realities of DID and that’s my only goal, really, to have those close to me understand. The masses shouldn’t matter too much”

I replied:

To answer your question, I do believe that it harms us. We could just say to take it lightly because *we* know the truth of it, and we know people fake it. And as you said, the masses shouldn’t matter as much as those close to us.

So – if we all want to stay in our little insular worlds, blowing off misrepresentations is fine. But if we ever want to be accepted in society…to come out of the closet, so to speak, then we slowly have to tear down these misconceptions. This disorder is odd and unbelievable in a way. Also, it is is generally caused by trauma, which is generally a taboo subject. So, bringing DID to light is doubly hard.

The subject of rape is gaining more acceptance as “not the woman’s fault” but it is still hard to admit it in public. Child abuse is more taboo.

We have a lot of work to do, one person at a time.

That is why I wrote this post. We don’t have to care what everyone thinks, but I’d like not to have to be wary of rejection so much.

Camigwen

  davidrochester wrote @

I agree about the importance of explaining, or at least trying to combat the ignorance. If a 200-word blurb catches someone’s attention enough to follow a link back to one of our more detailed DID experience blogs, then it’s worth developing that blurb.

I don’t think that 200,000 words could begin to do justice to the experience of my life (lives); nor do I consider myself defined by what others think. However, ignorance is not bliss … it’s just ignorance. I correct people continually regarding their misperceptions about what I do for a living; it’s equally reasonable to correct their misperceptions about how I live within myselves.

  castorgirl wrote @

For us the reason why there needs to be more awareness about DID is our experiences within the mental health system. DID was first mentioned as our diagnosis 3 years ago by a psychiatrist who was kind and patient. He told us straight up – “You have Disociative Identity Disorder. There is no treatment or recognition for the disorder here, so I’m going to send you through with the diagnosis of Borderline Personality Disorder”.

People with BPD get treated HORRIBLY here, so while he was trying to get us help, it backfired badly.

If there was more awareness of the validity of the diagnosis even within the mental health profession we’d be grateful. You’re right that no 200 words will make a difference, but its a start. Anything to make people think twice or even just pause and wonder.

  Emily’s Camigwen wrote @

So, I have been thinking along this and believe I have the opening couple of “grabber” sentences. But in the process, I got distracted by all the BS out there that supposedly describes DID. I will write another post on that too.

I have been busy lately – I am out of work and am chasing down some possible leads, so that explains me falling off of this every now and then. Ack. The economy sucks.

  castorgirl wrote @

Good luck chasing the leads…
Look after yourself and keep this as a distraction when you need it.
Take care…

  Tigerweave/Anna wrote @

First off, best of luck with the chasing of leads.

Second, Here are some random thoughts/observations:

I like the idea of emphasising DID as a positive thing, and the positives of DID (Someone mentioned it helped them get through uni for eg)

I don’t think DID is the point though, in the grand scheme of a person’s life. The difficulties I have faced I would have faced regardless of having DID, because that level of trauma I experienced, even had I not developed DID would have caused me the same problems.
Seriously, 8 yrs of steady therapy and hard work and still having problems in my life (albeit a lot less than 8 yrs ago) is a very realistic prognosis for someone with that level of trauma.
All the DID is, is a way of organising your awareness to allow you to accommodate the trauma and still have a life.
The problems are not DID!!! They are trauma problems. The expression of them in a DID patient is DID. The expression of them in someone like my brother is a shite relationship with his wife (hopefully improving, for his sake), severe physical illness with a clear underlying link between PTSD and the physicall illness, severe, crippling social anxiety disorder, a lousy ability to handle money, and a sense of his life being stolen from him.
He does not have DID, but his life has been as badly shattered as if he had.

In fact I think I have coped better overall because of the DID.

Given that perspective, I would emphasise it is trauma-based [As an aside, even people who claim their system is “natural”, if you listen to them (read their blogs!) long enough you discover a personality or two commenting on the severe trauma they had kids.]

The psychological/social problems a DID people faces is essentially the same issues as anyone severely traumatised (Mention Vietnam Vets? They have been around the longest, are perhaps less stereotyped and better understood, and had the political clout raped women didn’t, to get their problems paid attention too. Or even mention returned soldiers from Iraq?)

The reason DID are diagnosed with DID is because of the particular style organisation of awareness the person used to survive, the original trauma and later on cope with it.

I agree with not trying to explain what it is like internally for someone with DID. I don’t think even those singlets closest to us (including singlet counsellors) can ever really understand.
I would think it more helpful to look at what a singlet needs to understand when looking at it from the outside?

eg (random brainstorming) the different moods, clothes etc is just different personalities, not something wrong.

That most people are unlikely to ever meet more than one or two personalities, as the condition is usually hidden.

Just like anyone, they are more than they appear on the surface, but the parts you may never see are simply organised into different personalities as opposed to … gah whatever it is singlets have (!)

That when a DID person is struggling it is usually well hidden (like for any traumatised person) and if they break down it is almost always in a place of safety (naw that is too complex. Never mind)

Another thought is 200 words + diagrams? pretty, simple diagrams can convey a lot! Especially if they are placed well within the text (think good graphic design)

And last but not least, check this link out to a friend of mine’s livejournal. We could all just do the same and flood youtube with sensible stuff! 😀

http://theroyalus.livejournal.com/49097.html

  mo wrote @

I have a question, was trying to figure out the best place to ask it, Im not comfortable asking in any of the forms I have found out there.
Here goes…is it possible that a part, side , knows whats going on with you, but you dont know that part is there as in listening etc. eg. my appointment cards keep going missing, anything my T gives me to do at home disapears. I called her to find out when my appointment was, she called me back to tell me, I called her back again as I had no memory of her calling me. She told me she had called and spoke to me . My MID test came back with a DDNOs or DID diagnosis so she wants to do more test scid bla bla bla. Anyway is that possible, that a side is deliberately trying to stop me from going to therapy (obviously aware I am going) but I am not aware of that side..this is kinda crazy but just trying to make sense of it all. Sorry for rambling. Any input would be appreciated.

  Frag wrote @

— trigger warning —

For me, it’s as simple as this: DID is basically sets of personality traits combined with memories. Those “sets” are the personalities or alters.

When a child’s father is violently and sexually abusive in private, but loving and sweet in public.. When he is widely regarded as the most awesome and loving father by everyone that knows him… But the child knows that the second she is alone with him he will brutally rape her… She comes to recognize him as two different people. She fragments first him, and then herself. Everything becomes fractured, and not just “Self”. How can you eat breakfast with, or hug the monster that harms you? Yet, if no one knows that monster and is unwilling to believe you, YOU will be blamed if you do not act “Normal” around this man who is so cruel sometimes, and so loving others.

DID is the paradoxical reaction of a child that is unable to lie to herself. She can’t simply pretend to love her father.

She fractures BECAUSE of her strong sense of identity.

Like broken glass.

  Emily’s Camigwen wrote @

Hi mo

Ask away! All we can do is share experiences. (No comment on the forum stuff 😉 )

My gut reaction? Ohhhh yeah. Anything is possible, and from what I hear, it is not uncommon for an alter to sabotage you. You may not know it is happening, you may get hints (like you are now about the appt cards), but the important thing with therapy is to understand WHY that part of you sabotages, and work on that. I have a very angry part I can’t access often, but when she is there, my T and I have already prepared one question at a time to ask. To my utter amazement, I found something out about what this part of me feels – a single sentence. Complete shock. Now I believe I can actually reach this alter, when up til now, I thought it impossible.

But, I digress. It is not crazy what you are thinking. Ask your T for a way to record your appt elsewhere – I’m not sure, but if your T is good, she should have something to try.

(I had an alter who did not like a med I was on earlier this year. I wasn’t really aware of it, but we tapered off the drug slowly as the directions require and suddenly I found myself off of it.)

My best Cami

  moreheads wrote @

It would be great if something was out there that just told it like it is for us, not how doctors think it is.

This is more then 200 words but I think our Ravin put it together pretty well:

DISSOCIATION–404 PART I
http://moreheads.livejournal.com/44315.html

DISSOCIATIVE MOMENT #25000000000000+
http://moreheads.livejournal.com/46814.html

Not sure if you’ll be able to just click on it, might have to cut and paste.

Another good entry.

Sam

  Emily’s Camigwen wrote @

Hi moreheads – good stuff – thank you. I will have to look more extensively at this one too. I’ve let my thoughts on this post gel for a while, since it is a pretty important topic and I don’t want to miss a thought.

Thank you
Cami


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