The hardest thing for me about the Sybil Myth – all the stereotypes and misconceptions about Dissociative Identity Disorder (DID) and those of us with it – is that it blossomed from grains of truth. As much as I hate to admit it, sometimes I am Sybil. And these past several months I’ve been furiously kicking and gasping and gulping and crying and barely keeping my head above water. I want to believe that dissociation has allowed me to keep up appearances, but I know there have been some cracks in the veneer here and there. At home there’s no passing for normal … I’ve been a flailing wreck. A walking cliché.
I hate that I can’t be a big kid and swim in the deep end, but there you have it. Back to the kiddie pool I go.
people have told me that DID only comes from a creative, intelligent, and strong mind; it’s meant to be comforting. Really it highlights the potential that will never be realized. Spirituality aside, I’ll never be who I should have been. I’m a “change the world” and “rally for the little guy” type but right now I cannot handle thinking too far outside my own skin let alone globally. I may have never been a world leader but I could have not been 29 and on disability because trying to heal is a full-time job.
i guess that is where spirituality comes in: radical acceptance and all of that. Doing away with the “shoulda, coulda, woulda”s…but we don’t live in that kind of world.
My point, I suppose, is that I understand, or at least think I do, and we can be sybil together sometimes. Lord knows we can’t be soldiers all the time.
M of TM
Hi M,
“Really it highlights the potential that will never be realized. Spirituality aside, I’ll never be who I should have been.”
Wow, you really nailed it there. That’s precisely it. To be honest, I get pretty tired of the whole “DID is creative! You’re so strong!” crap. But I’ve never really been able to to put my frustration with that perspective into words. So thank you … you gave me the words.
You do understand, that much is clear. Thank you so much for sharing that with me. I wish it wasn’t that way for you – I wish you couldn’t understand; but since you do I’m really grateful you took the time to tell me. It helps.
It is nice to know i was able to help
thank you!
You very much helped, thank you. Having the words for things can make such a difference.
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It’s ok for the veneer to slip Holly. We’re dealing with tremendous issues and we do the best we can. Honestly most people I know couldn’t handle what we handle. Sometimes we have to stop trying so hard or we’ll wear ourselves out you know? You won’t drown if you stop and float for a while, let yourself rest. Heck I embrace the bipolar me sometimes and just say “To hell with it!” because it’s part of my reality and it takes too much energy to deny part of myself. I agree that we’re all Sybil sometimes, but you’re no stereotype my dear. You’re Holly and Holly rocks!
Hi tai,
“It’s ok for the veneer to slip Holly.”
Gosh that’s a hard one for me. It’s funny … I wrote a post for Dissociative Living yesterday titled My Mental Health Is More Important than My Pride. I kept typing and thinking of it the other way around, My Pride Is More Important than My Mental Health. It’s so ingrained. So hard to combat.
Still, you’re right – I’m telling myself that. Over and over!
Thank you so much, tai.
I’m really sorry you’re struggling…
This may sound perverse, but I think a huge amount of healing goes on when we finally admit that we need to go back to the basics of self-care and retire to the kiddie pool for a bit. Usually by the time we retire there, we’ve been sinking for months. We’ve exhausted our inner resources and have been running on empty for most of those months. So, it’s time to breathe, re-group, heal, soothe, and get back to the basics.
The biggest thing I forget when things turn to custard… there’s a difference between failure and needing to rest and re-group. Needing to rest and practice good self-care isn’t failure, it’s the smartest thing you can do.
So come and join me in the kiddie pool, the water is lovely, and you are welcome…
Take good, gentle care of yourself,
CG
Well said CG! How big is this kiddie pool anyway…?
I gotta wear floaties.
Hi CG,
Ah no, it doesn’t sound perverse. It’s true. In a lot of ways I feel about 150% better just from coming clean and waving my white flag. It’s a little seductive and I have to be careful to remember that relief is not the same as wellness.
“Needing to rest and practice good self-care isn’t failure, it’s the smartest thing you can do.”
You’re right. I just hate that I seem to need to much more rest, so much less pressure and stress than a lot of people. It makes me feel weak.
Turns out there’s good company in the kiddie pool though. Wheee!
If there is one thing that I have learned, it is that keeping up appearances can be exhausting. While much of the time it seems to be happening effortlessly, there is actually a tremendous amount of effort that your system is putting into this.
And I will unabashedly put on my floaties!
Today, I went to work, and the day started out fine. A little after noon, I found myself sitting at my desk shaking like a leaf and overwhelmed with fear. I have no idea what triggered this. But the thing I couldn’t stop thinking was…”Is this the day?.” “Is this the day my mask completely crumbles, and all of my co-workers see me for the weak, screwed up mess I really am?”
I internally talked my way through 2 more hours of work, not accomplishing much, then I came home. Exhausted.
Holly, I feel your pain. Now it’s time for you to be good to yourself. You deserve it, you know.
So…..if the kiddie pool hasn’t reached full capacity yet, I think I would love to join as well.
Hi Mareeya,
“While much of the time it seems to be happening effortlessly, there is actually a tremendous amount of effort that your system is putting into this.”
That is so well put. And so true. I forget that and then get so frustrated with my limitations when I inevitably slam into them at full speed.
The kiddie pool expands as necessary. I just decided that, and so it’s true. Join us! And don’t worry … if you start shaking like a leaf we’ll all understand. We won’t think you’re a screwed up mess!
When you all get done swimming in the kiddie pool, climb on out and join me in the kiddie park. That’s me over there, waving from the merry-go-round.
Hi carla,
I hope there are swing sets. And a sandbox!
Hi,
I can relate. I love to manage everything and think that nothing can take away my intelligence, my spirituality, my lifge, but sometimes I need to sit and hold a stuffed animal, the truth of what has been done and the depth of it’s damage and aftereffects overtake me. And I am so angry, so effected, and so enraged. Finally I have come to a space where I don’t have to believe either-or and can accept that like most people, most issues, most involvements, the truth is that there are more shades of gray rather than the black and white that I so desperately have clung to most of my life and unfortunately most of my healing. Now I see I am more complex, the gray is wthin me as well, yet I know I will go on, I will heal, and takikng in the reality of all of this helps me to love and accept myself more.
I think you are tremendously brave to write about this. Good and healing thoughts to you.
Kate
Hi Kate,
Thank you so much.
“I love to manage everything and think that nothing can take away my intelligence, my spirituality, my life …”
I know what you mean. It’s nice to feel capable, stable, and “on top of it.”
“Finally I have come to a space where I don’t have to believe either-or and can accept that like most people, most issues, most involvements, the truth is that there are more shades of gray rather than the black and white that I so desperately have clung to most of my life and unfortunately most of my healing.”
When it comes to DID itself and to issues of memory, I also feel better now that I’m capable of seeing the shades of gray. I suppose the same would hold true of my limitations, if I could just get to that headspace.
Holly,
Thanks for this blog. You’re obviously a smart lady.
This is a huge issue for me. I have a 5 yr old, and now that she’s in school there’s an expectation (mainly among mums at school etc – people who don’t know me well) that I’ll be working or something. Frankly, I don’t need or want any more on my plate.
I really need those hours during the day for myself and I’m grateful I have them.
Of course, I feel inferior for not having much of a life.
I find keeping up the facade extremely exhausting. I constantly fantasise about how delicious it would feel to drop it. But of course, it’s involuntary.
I’m new to DID. Possibly I have DDNOS – I’m a bit confused about the dxes.
I’ve been diagnosed with bipolar disorder & PTSD in the past.
I think I fit DID, but on some forums I’ve read that you have to have amnesia between alters and yourself to be ‘properly’ DID.
I pretty much have co-consciousness (I think) but I thought it was a spectrum & that I’m just at a different place on it compared to those with total amnesia.
Again, Thanks.
Zel.
Hi Zel,
Thank you for reading! And for the lovely compliment.
“I find keeping up the facade extremely exhausting. I constantly fantasise about how delicious it would feel to drop it. But of course, it’s involuntary.”
It is exhausting, yes. And involuntary too. But I will say that things can change, they can ease. It’s possible to feel less and less held hostage by the automatic dissociative mechanisms that create those facades. It doesn’t have to be that way forever.
About the diagnoses … DDNOS and DID are just that, diagnoses. They are important because they provide a framework and direction for recovery. And I do believe that the distinctions between the two matter. However, whether one actually has DDNOS or DID doesn’t matter that much. What I mean is, pinpointing which one fits an individual is important, I think. But that’s it – whether that right diagnosis is DDNOS or DID isn’t so important. The approaches to treatment, while there are differences, are basically the same: increase awareness thereby moving towards a more cohesive sense of self. The primary reason I believe proper diagnosis of one or the other is so important is simply because people who are severely dissociative already can easily become more dissociative in response to diagnosis and improper diagnosis just exacerbates that and further confuses the person.
And I should note here that severe dissociation is often par for the course with PTSD. So it’s possible to have PTSD but not have DDNOS or DID and yet still relate to both of those disorders and see echoes of them in your own life. Honestly, most people – even those without any kind of mental illness – should be able to relate to DID as it is an extreme manifestation of what we all experience.
And yes, amnesia is one of the diagnostic criteria for Dissociative Identity Disorder. But remember, those diagnostic criteria do not exist to define people, they exist to give clinicians guideposts so they’re able to recognize DID when it shows up on their couches. The diagnostic criteria matter, in other words. But as a former forum/chat user I can say without hesitation that when you get hundreds of traumatized, dissociative people together, there is often an undercurrent of pride in diagnostic criteria that is baseless and potentially harmful. Metaphorically speaking, black and red are different colors. But there is nothing special about being black as opposed to red.
” … I thought it was a spectrum ….”
It is. Absolutely. Even DID exists on a continuum of severity. I do not, for instance, have as severe a case of DID as some people do. And others have less severe cases than I do.
Have you been diagnosed with a dissociative disorder? If not, I’d encourage you (if I may be so bold) to see a therapist and discuss your concerns. There are diagnostic tools for pinpointing dissociative disorders that I, for one, have faith in – providing the clinicians administering the tests know what they’re doing.
I hope to hear from you again, Zel.
Thanks for your reply Holly,
“DDNOS and DID are just that, diagnoses. They are important because they provide a framework and direction for recovery. And I do believe that the distinctions between the two matter.”
This is what I’m not clear on…What IS the distinction? Could you help me with this?
I’ve been looking at the proposals for the DSM-V…Have you seen them?
I read another blog and the woman was saying that she felt the only real difference was DID having the amnesia between the parts and the ‘host’ and DDNOS not having this amnesia. (Is this co-consciousness?) Does co-consciousness preclude DID?
I do have a psychologist and a psychiatrist. I’ve brought up my theory with the psychologist. She doesn’t really speak the DSM language. She knows it I think, she just doesn’t use it much.
She doesn’t do the mapping of systems or call them alters because she thinks it’s too concretising.
Her reply was “Yes. Yes, you have dissociated parts.” She said that twice. It’s just this obsessive part of me that wants a definite dx you know?
I’ve done the DES and the DDIS (I did it myself though – it’s meant to be administered) and come up with high scores on both.
Best, Zel.
Hi Zel,
At this time in the US, there are 5 dissociative disorders, designated as such in the DSM-IV. They are:
Dissociative Amnesia
Dissociative Fugue
Depersonalization Disorder
Dissociative Identity Disorder
Dissociative Disorder Not Otherwise Specified
DDNOS is the diagnosis given when the assessing clinician has clearly identified that their client has a dissociative disorder, but said client does not meet all the criteria of any of the other dissociative disorders. So it’s not unusual for someone who exhibits many of the symptoms of DID, but doesn’t have amnesia between personality states – which I gather is what you’re saying your situation is – to be diagnosed DDNOS. It’s also not unusual for clinicians to begin with a diagnosis of DDNOS and, over time, change that dx to DID as they’ve gathered more information. In other words, the distinction between DDNOS and DID may be amnesia, or it may be identity alteration, or anything that is part of the diagnostic criteria for DID and yet isn’t present in the patient.
“I read another blog and the woman was saying that she felt the only real difference was DID having the amnesia between the parts and the ‘host’ and DDNOS not having this amnesia.”
A lack of amnesia, as I said, can be the distinguishing difference between DID and DDNOS, yes. But that’s not just something that exists between parts and “host” – the host concept isn’t even something I subscribe to, but that’s another subject altogether – amnesia often exists between personality states. Every system is different, so it’s not accurate to say that with DID there is amnesia between the “host” and parts. That’s just one of many ways amnesia manifests in a DID system.
From your comments it’s clear that you haven’t even been told your diagnosis and you’re trying to sort it out on your own. If that’s the case, may I recommend that you directly ask your therapist for more information? Psycho-education is a vital part of the therapeutic process, in my opinion. And explaining to someone their diagnosis is not reinforcing dissociation – it’s simply telling someone about the illness they live with. It would be unacceptable for an MD to keep a medical diagnosis a secret from a patient because they think ” … it’s too concretising.” It’s just as unacceptable for a psychologist to withhold that kind of information from a client. Have you asked your therapist what your diagnosis is, if any? What she means when she says you have dissociated parts? What the differences are between DID and DDNOS? If not, I encourage you to. These are questions she should be willing to answer.
The DES and the DDIS are screening tools, not diagnostic tools. Those tests are helpful in that they give you an idea of your dissociative experience and, if you’re getting high scores, take those results to a clinician who is trained to administer diagnostic tests like the MID and the SCID-D. In other words, neither the DES or the DDIS can tell you if you have Dissociative Identity Disorder. A clinician who is educated and trained in dissociative disorders can.
It’s entirely understandable to want a name for what ails you. I hope you’re able to not worry too much about it. It will take time and some effort, but you can gain clarity about what your experience is and what that means for you diagnostically. Some of that comes from others, but ultimately you are the expert on your experience. Right now you’re confused. And it’s probably uncomfortable and you just want to KNOW already! I understand. I’ve been there. But I also know that I was so unsettled about my own reality that it didn’t matter how many answers I was given, or by whom – I was still unsure, still confused, still unsettled. Ultimately, I had to find my way to my own understanding of my diagnosis.
Hi Holly,
Thanks for replying to me.
I’m a little less obsessed with a dx at the moment…I think I’ll just diagnose myself DDNOS and wait and see what happens.
I will ask my psychologist more questions next time I see her. I find it a bit difficult for some reason. I think it’s because I know she’s a bit ‘anti-DSM-mainstream psychiatry’.
I’ll also ask my psychiatrist who I’m seeing soon (I don’t see her as often).
I’ve been noticing a lot of stuff and writing it down like: I have this really strong controlling part whose role is to keep me & my life as ‘together’ (hate that term) – at least on the outside – as possible.
This part also makes me numb, completely unable to let my guard down in therapy (or anywhere else), un-spontaneous, very tightly wound and exhausted from keeping all my emotions under wraps.
Then I realised that any parts or emotions that want to be expressed actually have to go THROUGH the controlling one! No wonder I’m so shut down.
Another realisation is about amnesia. I might feel a certain way (sometimes strongly) about something, and then a couple of days later, I intellectually remember feeling that certain way, but it seems very far away and I no longer feel like that at all. Certainly not total amnesia but like an emotional amnesia. (Or is what I’m explaining perfectly normal?)
This is part of the reason I’m scared of marriage – I can’t rely on that continuity.
I know everyone’s feelings change over time, but I feel this is different.
Anyway, Holly, Thanks for reading,
Zel.
Hi Zel,
I understand being obsessed with the diagnosis. It’s normal to want a name for what’s happening to you.
Before I go on I want to reiterate that I am not a mental health professional of any kind. If what I have to say resonates for you, awesome. But I worry about defining other people’s experiences for them, whether I do it purposefully or not. So please know that’s not my intention and take my words with the proverbial grain of salt.
“Another realisation is about amnesia. I might feel a certain way (sometimes strongly) about something, and then a couple of days later, I intellectually remember feeling that certain way, but it seems very far away and I no longer feel like that at all. Certainly not total amnesia but like an emotional amnesia. (Or is what I’m explaining perfectly normal?)”
I suspect, again just as a layperson not any kind of professional, that that’s a number of things coming together. I too have that experience regularly. For me, yes it is part of having DID. It’s a combination of dissociative amnesia, depersonalization, identity confusion, and identity alteration – all different ways dissociation manifests. The thing that’s important to remember here is that all of these things – dissociation, each manifestation of dissociation, and even DID itself – exist on a continuum. It sounds like, from your comments, that you’re looking at it as very black and white. Either it’s amnesia or it’s not, that kind of thing. Which is totally understandable by the way. But it’s not a cut-and-dried thing. Everyone experiences dissociative amnesia to a degree – it’s just that usually it’s much more mild. A person who isn’t particularly dissociative might go into a room and then forget why they went into the room in the first place. We all do that sometimes yes? This is a mild, and perfectly normal form of dissociative amnesia.
This is how I describe dissociative amnesia in DID – you know that feeling like something is on the tip of your tongue? Imagine your whole life, your very identity is on the tip of your tongue. That’s DID. That’s the difference.
Does that help?