6:10am July 25, 2014

More on dissociative disorder NOS (for catharticcruella)

I also have DDNOS and PTSD. I read your other blog years before either of us were on Tumblr and still didn’t know you had DDNOS until recently.

Yeah, IIRC I didn’t mention the specific diagnosis very often.  I think if I’d mentioned it by name at all, it would’ve been on some of those diagnostic papers I posted ages ago and then removed.  Then again I might have redacted everything but the autism diagnoses on those, so I am not sure.

I was more likely to mention dissociation in contexts like this post:

The Summer Thing

Where I’d mention that they’d found ‘severe dissociation’ but I didn’t mention the diagnosis by name.  I also remember (though didn’t post about this) when I first went in for SSI, they sent questions to several of my shrinks to confirm the autism diagnosis, and one of them said something like “Yes, she’s autistic, but there’s also a severe dissociative component to her disability.”  

But for the most part that diagnosis went by the wayside after awhile, like a lot of my diagnoses at the time, and I think I only mentioned it in message board posts and the like about how many NOS diagnoses I’ve had in my lifetime (a lot – to the point where at one point my teacher asked me what my autobiography would be called if I wrote it, and without hesitation I replied, “Amanda, NOS”).

I’ve had diagnoses of PDDNOS, developmental disorder NOS, dissociative disorder NOS, psychotic disorder NOS, and central nervous system disorder NOS.  I think that’s the full list of my NOS diagnoses but I’m not sure, I’ve had so many diagnoses that it’s hard to remember at times.  

I think psychotic disorder NOS was wrong, but at the time they’d have had no way of knowing it given that I was still trying to bring dreams into reality and reality into dreams, my ambitious but failed project that took about seven years before I finally gave it up for good.  That made me look plenty psychotic at times.  (I wrote about that in Life Is Not A Dream, which you probably read already?  That “project” was a huge part of what got me considered psychotic, and also some of what got me considered dissociative.)

CNS disorder NOS was where they dumped all of my weird developmental traits that they couldn’t dump elsewhere, including many that were just plain autistic traits that weren’t formally linked to autism back then such as severe sensory issues and catatonia.  I think CNS disorder NOS was until recently how they coded my catatonia.  I suppose under the new DSM I will be able to use “autistic spectrum disorder with catatonic features”, but the diagnosis of autistic catatonia didn’t exist back then and wasn’t listed prominently in the DSM as it is now.  (That’s my one actual piece of excitement about the DSM-V criteria: the inclusion of autistic catatonia as A Thing.)  They also used CNS disorder NOS for the fact that they really weren’t sure what was going on with me on many levels and thought I might have some sort of rare neurodevelopmental thing.

But I don’t think I’ve actually written that much about dissociation and my diagnosis thereof.  I’m not sure why.  I know that until I had pain treatment, I was severely dissociative, and have become less so after the treatment.  But I rarely named the diagnosis by name except again, in things like message board posts where I’d sometimes post the “NOS litany”, I’m pretty sure.  Not sure why I didn’t put it on my blog, other than that it was a long time ago, and I’ve had a lot of diagnoses, most of which I don’t talk about by name a lot whether they were accurate or not.

My biggest dissociative thing was I’d feel like part of me was suspended in murky water, beyond the reach of everything, while another part of me was raw and open to the world and in constant pain and agony from neuropathic pain and sensory issues.  And I was always feeling that contrast between floating numb in the water and being thrust too hard into the world to the point that everything everywhere hurt so much I couldn’t take it.  And that’s how I got through most of my days with severe pain.  I’m also sure some of my dissociation was due to traumatic events, but a huge amount of it was due to pain and sensory issues.  I even remember telling a therapist that maybe there would one day be discovered a type of autism called “dissociative autism”, and that I would have it, and some other people I knew.  Where people would dissociate severely due to sensory issues and other stresses accompanying autism.  (I no longer think that’s a great classification scheme, but I was young at the time and new to self-understanding when it came to autism.)

But after awhile I just stopped thinking and discussing dissociation much, or the diagnosis that came with it.  Especially after pain treatment.  Although I think I’ve also discussed dissociation as a pain-related survival skill that some pain psychologists have to teach their patients, but that most of those of us who grew up in severe pain had already figured out the hard way.

I still remember a time when they managed to numb one branch of my trigeminal nerve (the source of my worst pain) completely for a few hours.  This is when I had no other treatments for TN and had secretly become suicidal due to the pain levels.  And I remember when they had numbed only one section of the nerve (out of three that all hurt), it made such a difference in my connections with everything, that when the feeling came back into my face, it felt like a prison door slamming shut and locking.  Like I couldn’t connect to the world anymore.  And I realized how much dissociation becomes part of my life without my even noticing.

Now they’ve switched Neurontin to Lyrica, added Trileptal, and given me facial injections every three months, the trigeminal neuralgia is much more manageable.  And yet I still feel that disconnect between me and the world when the pain gets too bad.  And I get that old, old sensation of floating.  Also, during the injections themselves, I dissociate as heavily as humanly possible, and they still wonder how it is that I don’t twitch or make noise or make faces or scream during the (very painful) injections.  It’s because I’ve got dissociation down to an art form.  

Not that I always have much control over it, but I do sometimes have some control.  Like when I’m in pain, I can choose to dissociate more.  And other times, I have learned to ground myself and connect to the world even as my brain wants to dissociate heavily.  But there are still times when the world recedes so far away that it feels like I’m in a cave and the world is at the far end of the entrance where I can’t even see it.  

And there are still times when I am more connected to things than I could ever feel, before.  In fact the last several years has seen a huge decline in dissocation, a huge increase in connectedness, and a corresponding increase in happiness.  Some of that is the pain treatment, but I think other parts of it are a lot of work I’ve done.

ETA:  I now also remember that dissociation was one of the things that my shrink meant when he talked about me being pathologically passive.  As in, I wasn’t just passive socially (an autistic thing, and one of the only things they’ve found that’s a good marker for who turns out to have autistic catatonia later as it turns out), I was apparently very passive in general, and in response to stress I’d just go inside my own head and dissociate in various ways, and he spent a lot of time and energy trying to get me to learn how not to do that.  Like most things of that nature he spent a lot of time and energy on, his heart was in the right place but his efforts were not and he failed.  I only started learning non-passivity as a young adult.  Like most other real life skills I learned, I learned it from other autistic adults.

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