[Path]

I dealt with symptoms of DP/DR for many years without understanding them as such. Now that I am in therapy, I have started being able to track my symptoms more clearly.

What I am discovering is that while some of my DP/DR symptoms are ALWAYS present (visual snow, for example), I am actually cycling between two distinct "states"--one of these states is severely depersonalized and the other is only mildly depersonalized. When I am in one, it is hard for me to relate to the other. That is, when I am in the severely depersonalized state, my mind is telling me that that is how I feel ALL of the time, that that is the core of who I am, and I feel quite disabled (although I can force myself to perform necessary social/work tasks by separating my external self from my internal self). When I am in the relatively engaged/connected state with only mild depersonalization, it is hard for me to grasp or really understand how badly I feel on the other end of the spectrum, and I feel fairly capable of participating in the external world.

Does anyone else out there have a similar pattern of experience? Does this sound like the kind of fluctuation of depersonalization symptoms that can be associated with Depersonalization/Derealization Disorder? Or is this more like DDNOS or I guess now OSDD in that the states are so different from each other? I'm pretty sure I don't have DID because these states do NOT have different names/ages/personal characteristics etc although they do seem to each carry a pretty different set of beliefs about myself.

 

[Surfer Rosa]

What you've described here is a very common saying on this site from recovered people, the part about, "I can't even imagine what it's like to be depersonalized." Now, if people suffering could feel what it's like to not be dissociated at all, they wouldn't have a problem. Depersonalization is considered dissociative, so you would in general be feeling much less, which is not relatable to someone who is not dissociating. This sounds like a disagreement between your former and present self, not a fugue or amnesia.

You could have a more serious dissociative disorder, but I don't see this as any indication whatsoever. An ambiguous dissociative diagnosis kind of implies that you are experiencing things beyond the realm of depersonalization-derealization, doesn't it? I think they changed it in the DSM-5 for that?

 

[Path]

Thanks for your thoughts on this, Surfer Rosa. I think I understand what you are saying. The thing is, I do not feel recovered at all. My "good days" and "bad days" happen in quick succession and alternate according to a pattern that feels completely out of my control. And the worldview that governs each is so radically different (basically "I am part of this world" vs. "I am not part of this world") that these shifts are jarring, disorienting, confusing. And these competing narratives interrupt each other when I get stuck somewhere in between for a while--"I'm okay/You're not okay/Yes I am/No you're not" and on and on.

I suppose your theory could be right if recovery takes the form of gradually experiencing more of these distinct windows of time in which I feel less depersonalized. But the way in which they alternate with this feeling of total emptiness makes me feel like I am in a maze. And it's a maze that basically nobody around me knows I'm in.

 

[Surfer Rosa]

I wasn't implying that you are recovered, just that you expreience depersonalization to a high degree, and then you experience it less. It seems like a great many of us have that, as well as feeling upset and jarred as if punched in the head when strong depersonalization comes on. I understand what you're saying about the thoughts coming with it being concerning. You consider yourself part of the world one minute, and then an observer the next. Personally, I experience the world as real one moment, and then dreamlike the next. It is very distressing for many of us right now.

 

[Alex617]

DP/DR is not the core of how you feel. Whatever dp/dr is, it's a kind of state like any other state. My theory is a dp/dr state where your brain is altered due to aftereffects of high-stress or severe anxiety, but instead of just getting it over with you overanalyze everything you feel.

 

[Path]

The day after an episode of severe depersonalization, if I am feeling better, my memory of what happened is hazy at best. I sort of rewrite the narrative of the previous. For example, if yesterday I was laying in bed for several hours feeling immobilized by fear and rumination as if swallowed by a black hole, the next day I might think to myself, "wow, I sure was tired yesterday."

 

[Zed]

Does anyone else out there have a similar pattern of experience? Does this sound like the kind of fluctuation of depersonalization symptoms that can be associated with Depersonalization/Derealization Disorder? Or is this more like DDNOS or I guess now OSDD in that the states are so different from each other? I'm pretty sure I don't have DID because these states do NOT have different names/ages/personal characteristics etc although they do seem to each carry a pretty different set of beliefs about myself.

I have a similar pattern of experience to you. Reading what you said about these 'states' having a different set of beliefs about yourself, to me, is tending towards DDNOS on the dissociative spectrum of disorders. There's no reason to be fearful of that btw. In fact ppl at the higher end of the spectrum often have a better insight into what's happening in their minds which ultimately helps with recovery. And there's no reason to be fearful of having DID either. It's far better to know exactly what you're dealing with than not. It also means you can aim more specifically at the people you want to work with to help you heal.

It's great you can see these different 'parts' of yourself and how they react in the world. Becoming aware of what's really going on is a huge benefit with these disorders. Without awareness, you have nothing to work with. Over the years, I've talked to my therapists and friends a lot about awareness and we've talked a lot about how to gain awareness - by simply being curious - curiosity without judgement.

 

[inferentialpolice]

The criteria for DID is not (as you stated) "these states do NOT have different names/ages/personal characteristics etc", rather, it is that "the disruption in identity involves marked discontinuity in a sense of self and sense of agency, accompanied by related alterations in affect, behavior, consciousness,memory, perception, cognition, and/or sensory-motor functioning." I can see from your elaborations on your subjective senses -- "when I am in the severely depersonalized state, my mind is telling me that that is how I feel ALL of the time, that that is the core of who I am, and I feel quite disabled (although I can force myself to perform necessary social/work tasks by separating my external self from my internal self). When I am in the relatively engaged/connected state with only mild depersonalization, it is hard for me to grasp or really understand how badly I feel on the other end of the spectrum, and I feel fairly capable of participating in the external world." -- how that might fit within the criteria snippet mentioned above, and perhaps more-so over time in therapy as your reflective capacity increases within the therapeutic relationship. It is a known secret in the field that DDNOS (OSDD) patients, when tracked in therapy over time, generally have become attuned to themselves well enough to be able to relate dissociative experiences which can add up to a subtle DID diagnosis. The good news is that the treatment for DID and DDNOS is the same -- specialized psychotherapy, and (if needed for grounding to facilitate psychotherapy uptake) medications used adjunctively -- and that it need not be a chronic condition but rather one where recovery is possible.

 

[Path]

I appreciate the different perspectives here, and the encouragement that treatment/recovery is possible, regardless of the exact diagnosis. I appreciate that at this stage my therapist is not focusing definitive diagnostic labels, which I think makes sense as my awareness of what's going on is very much evolving day by day.

Inferentialpolice, I have previously read the criteria for DID that you quoted and thought that I maybe experience a subtle form of that. Right now, I feel a need to connect to others who may have similar experiences (in addition to individual therapy, which is very useful, but can also still be somewhat isolating if you are learning a lot about yourself without being able to process it with a lot of people in your daily life).

What I find striking is that if I start looking at an online DID forum, I can't relate to what people there are talking about at all--all these altars and intricate systems. I relate to MOST of what I read here in a DP/DR forum. But then there seems to be this piece of my experience that for me is a little different, which I have tried to describe in this thread.

It is also striking that although the majority of people with dissociative disorders are diagnosed DDNOS, there don't seem to be the same kinds of online forums where people with this diagnosis are sharing their experiences, compared the kinds of online communities that exist for both DP and DID.

 

[inferentialpolice]

Path, I imagine most online forums for DID are heavy in a young demographic, and it has been known in the field that "those diagnosed in their 20's seem to show more open pathologies than those diagnosed in their 30's, many of whom present as depressed, anxious, controlled, and mildly obsessional. Patients diagnosed in their 40's often were very strong individuals of considerable accomplishment, whose pathology was quite well hidden." Source: Kluft, Childhood Antecedents of Multiple Personality. Also, what we mean definitionally by Flamboyancy is openness, and while such dissociatives make up only 7 or 8 percent (with the rest trying to hide or deny their problems and live lives of quiet desperation) their very nature relative to those secretly suffering seems to explain their predominance of presence in online forums.

Diagnostic labels have a bad rep, but when they are arrived at via a therapeutic interviewing process, such as the SCID-D for dissociative disorders, a label (diagnosis) can be quite useful in promoting targeted psychoeducation and self-awareness. You may want to read Dr. Marlene Steinberg's Stranger in the MIrror: Dissociation, the Hidden Epidemic, to gain an understanding on how assessment can inform recovery. (Disclaimer: I assist Dr. Steinberg in her research)

 

[Path]

Sounds familiar...

those diagnosed in their 30's, many of whom present as depressed, anxious, controlled, and mildly obsessional

 

[ibelieveinmiracles]

I experience this. When my DP is bad, I become so hopeless and disconnected that I can't imagine how I have dealt this long or how I will continue to. When it's more manageable, I feel hopeful and like, oh if it gets bad again, I'll have perspective. But I don't. My outward likes, hobbies, desires, personality don't change (I do get sadder or more irritable), I don't have memory lapses, and I've been in therapy for two years for DPDR without anyone mentioning DID. So if you have DID, I probably do, too, though from what I can gather from the DSM and the many professionals who have treated me, I don't.

DPDR is on the dissociative spectrum, so there will be some overlap, but I don't think I have two distinct personalities. I just really really really hate DP.

 

[Bedinus80]

I feel the same too. I have very good days, when I am almost 100% in real life again. And I have really bad days as well, when I am totally DP'd . For me, DP is the leading symptom now. When I first had anxiety in my life, I had only DR and in a mild form. Than second time my anxiety was worse and had a terrible panic attack, which caused severe DR and DP. Now, it is the third time I have this, I have (had, because I feel much better) mostly DP, but severe DP. My DP is based purely on axiety. That means, when I have bad days, my anxiety rises- my DP rises - I will panick because of it - more DP - more panic etc. On those days I am really depressed and thinking about the meaning of life, or how long my life will be like this?

 

[Path]

It's interesting (and personally comforting) to hear the range of experiences you all have, where there is overlap between many of us, and the different ways people have come to understand and label their experiences.

I know that my mind tends toward compartmentalization, wanting to cut through the chaos and confusion by putting things in discreet boxes, but understanding dissociation (or anything else for that matter) as a SPECTRUM is inherently messy and fluid.

It does make me wonder about to extent to which the way we come to frame our own inner experiences may be be influenced by the particular orientation of a given therapist.

 

[Path]

I've noticed a number of people on this site saying they experience "depersonalization spells". I am very curious what people mean when they use the word "spells" in this way, in relation to what was being discussed on this thread.

 

[inferentialpolice]

I've noticed a number of people on this site saying they experience "depersonalization spells". I am very curious what people mean when they use the word "spells" in this way, in relation to what was being discussed on this thread.

Many of the symptoms related in postings to dpselfhelp are suggestive of a dissociative disorder beyond mere DP/DR. Such symptoms include fluctuations in a person's dissociative experiences, including a coming and going of DP symptoms, ie, "depersonalization spells". It may be, upon assessment, that such "spells" reflect relatively subtle state switches. It is my belief that if assessment were more perfect, and if the patient could surmount denial enough to more fully relate their true subjective experiences, then those who exhibit DP or DR or dissociative amnesia symptoms would likely be found to meet the criteria for DDNOS or DID.

 

[simonlebon]

I definitely have times where i feel more and less depersonalized (and hopeless). I have heard this called "setbacks" as well. But the setbacks are VERY common and happen quite frequently, so I don't know if they are really setbacks or just the ebb and flow of emotions that we are maybe just more attuned to because of our inner focus and "watching" and amped up nervous system. I dunno.. I just think over fairly long periods of time they are slowly getting better and our systems are working their way back to homeostasis as long as we are getting the right treatment and doing the right things.

 

[kipsenpai]

I have the same issue, but it gets particularly bad for me at night when I'm tired or I've been focusing on something too long, sometimes even randomly. But it's not just bad or feeling weird, I would describe it as terrifying, and the first time it happened to me again a couple months ago I honestly thought I had been drugged or poisoned because I hadn't felt like that in so long, and then I remembered my DPDR from the year prior. It's amazing to me how I had recovered eventually, and never noticed, until it came back. But what I really hate, is like what you said, It will be very, very, very awful one night, like I'm in an entirely different universe... and the next day I pay absolutely no mind to it. Like I completely forgot about how terrible it was, until it happens again the night after or whatever. But you can recover, although that makes it almost twice as bad when it comes back, at least that's what happened to me.