#osdd advice

In my dreams, they’re always memories of some sort. The biggest thing for me is that I understand what is happening and why I’m in them. I understand my place and what I’m doing and I don’t have to make decisions because they’ve already been made. When I’m in the dream itself, I’m always like “wow, I remember so much. I understand so much about myself and why I am the way I am. I can’t wait to tell myself about it when I wake up!”

But then I wake up and it’s like that time I spent was a black hole. I can’t remember what happened or why. I can remember like flashes of the places I was in if I’m lucky, but that’s really it.

It makes it hard to know who I am when I wake up. It takes me a long time to reorient myself and to feel okay. I always feel like a bad person when I wake back up. I sometimes get really cold and my teeth chatter. I don’t know if there is anything I can do to make sleeping easier.

You don’t have to do it everyday. Keeping a journal for us is just how we like to organize information & notes. And on average we write in it once a week

If you want to keep a daily journal, especially for systems that struggle with time recollection, amnesia, and similar stuff, I highly suggest the app Daylio

We have it set up so that even if we can’t write about our day, we can at least keep an entry to log the simple stuff. Here’s how we set it up;

We have an “activity group” for front, and actual activities. This is what our entries normally look like;

The only explanation I've ever gotten was, "It's really rare." They haven't tested me. I filled out a online test and gave it to them but they didn't talk about it next session or tell me the result.

Does that mean I'm a singlet? Is this all just a delusion? If three doctors think I'm wrong then I'm wrong, right?

Hey, glad I can help!

So, there are a few things here that I think would be useful for you to know, first and foremost. Now, before all this is said, don’t let it be any kind of discouragement to you. This happens to a lot of people with and without DID.

There is not a single online test that is going to tell you whether or not you have DID with any kind of accuracy. Yes, this includes finding official diagnostic tools like the MID or the SCID-D or anything else. Even if you have the scoring guide. There is not a chance that you, in your position (or any [especially nonprofessional] undiagnosed person, for that matter) are going to find those tools helpful. Your therapist or psychiatrist will see online tests as equally unhelpful.

Paper testing is not required for a DID diagnosis. If a therapist is a specialist and knows what they’re doing, they will be able to diagnose you after a while of talking to you and getting to know you and scoping out your symptoms.

Doctors telling you that “this disorder is rare” is their way of telling you they don’t think you have it without saying that directly.

Now, all that being said, I doubt that these are dissociative specialists that you’re seeing. I haven’t known of a dissociative specialist that would agree with the statement that “DID is a rare disorder” or at the very least would say that out loud to a patient. I wholeheartedly believe that the opinions of doctors/psychs who do not specialize in trauma and dissociation/dissociative disorders should be wholly, if not mostly, disregarded. They don’t know what they’re talking about and have likely spent very little time researching it.

This kind of puts things up in the air for you. You may or may not have DID, and the likelihood doesn’t swing further in either direction from the information we’ve got here. The only way you’re going to find out for certain is if you see a psych who actually knows what they’re talking about. Anyone else is a waste of time and money, and I’m sorry you’ve been subjected to it already. The ISSTD site can help you find dissociative specialists, and so can Psychology Today. I’ll reblog this post with some resources and advice on helping you find a therapist. Being completely upfront is the way to Do do not tiptoe around any of it. Be straightforward. And remember that your priority is treatment, not diagnosis, because if a specialist believes you have DID and can help you, whether they write that down on paper or not only matters for insurance purposes.

I cant and won’t tell you whether or not you have DID, because I don’t know you and I am not yet a professional. I will tell you that going to an eye doctor for an upset stomach isn’t going to give you any answers worth your time, and that this is pretty much doing that. a find someone who’s worth your money and time for the issues that you believe you’ve got.

i would be straight up. i’ve been diagnosed for a while (i was about 14 when i got the bomb dropped. made finding treatment easier down the road, though) and i’ve had to move therapists as i’ve lived in different places, and honestly, i’ve developed the method of being upfront. if a therapists is unqualified to treat did, i don’t want them working for me. so i just tell them— i have DID, and i need a therapist with experience to treat and help me. have you treated anyone with it before?

if it’s a therapist you’ve been with for a long time it’s a bit different, though. i don’t really have experience with that specifically, but i would honestly just open up the floor and bring it all out. if i understand correctly, you want to ask about figuring out a diagnosis and treatment situation, and in that case it’s best to be honest about your experiences and be direct. hey, i think i might have a dissociative disorder and some buried childhood trauma and i’d like to talk about this with you— diagnosis, your experience if any (have you ever treated someone with one in the past?), and if you’re qualified to treat (this is important) complex, long term, childhood trauma.

please make sure you are specifying that, as treatment for that specific trauma is different from normal PTSD treatment. this is why EMDR has to be specifically modified for CPTSD/BPD/DID, and why some patients opt for the more specifically adapted brainspotting (similar to EMDR but for complex trauma) instead.

do not be afraid to drop a therapist. if your therapist is not working for you, what are they doing?! you need to figure out what’s going on and at the very least be treated for your trauma by someone who knows how!

The most I could find was this comparison:

1A is like Dissociative Identity Disorder, but the “parts” or “alters” aren’t totally their own people like DID alters are; they could represent more of the original person’s different emotional response states or represent the original person at different ages when trauma occurred.

1B is mostly DID without dissociative amnesia between alters. The alters present more like the ones in DID, but they don’t experience the same types of mental blackouts or time jumps that are commonly seen in DID.

and this article right here for a general OSDD diagnosis,,,,

Hopefully this is helpful, apologies, I really couldn't find anything specifically for OSDD-1A, but for a basic description, the only difference it has with 1B is the fact that OSDD-1A systems are usually median/not fully separate, like the comparison above says!

If anyone has any other resources, feel free to reblog this too!!!

This just seemed like the perfect blog to send something like this in, I just had to get this out and I feel so alone with dealing with this shit. Trauma recovery should never mean removing the survivor from their present moment and bringing them back into trauma, especially WITHOUT CONSENT which is all Ive been fucking getting no matter how blunt and upfront I am about controlling my own care. I just want her to see a person, not pain. Why is there no nuance? Why cant I be a person in pain sometimes and a pained person other times?

I am glad you sent this here. I’m sorry I’ve taken so long to respond. The way October is for me has just made me step back a little.

It sounds like this is a blessing in disguise. (Signaling you to RUN!!) Because your therapist is doing so many things wrong I doubt they should be treating anyone with DID. I mean, the fact they’re trying to get you to do trauma work multiple times a week when you do not want to or threatening to drop you is one of the biggest therapist red flags I think I’ve ever seen. And it sounds like a tactic an abusive parent would use. Trauma therapy can be and is retraumatizing if it is not done right, and this is especially the case with DID. That’s why there are phases to its treatment.

You are supposed to be *reasonably stable enough to be able to handle any of the consequences that occur and to be able to cope with what you go through* when you start to deep dive into trauma. The VERY FIRST phase of treatment is stabilization. And it sounds like you are just being forced straight into constant… This? No!!! This is not how you do it!!! This is not therapy!! This is forcing someone to have flashbacks at your will and threatening them if they don’t!! How is that okay?? It’s not!!

And this isn’t even to MENTION that if you are not ready, or say you do not want to do trauma work that day, or are severely uncomfortable or a host of other things— the therapist SHOULD NOT be either making you do it or even allowing another part to try to force you into it for self harm purposes.

I’m so sorry. Please find another therapist. Let her drop you. That threat was a blessing in disguise. This is a situation that cannot end well, and I worry about her other patients if she acts like this is standard. She needs to deal with her own issues before she should be anywhere near others’. If you need resources for help finding therapists, please send an ask or a message my way letting me know or and I’ll help you out. There are also some in my #advice asks tag.

Trauma therapy should not torture you, it should not hurt like this. It hurts, but it should not be this way. And there are good therapists out there, it just sounds like you haven’t found one yet. And I’m really sorry for that.

First of all, anon, I want to say that your experience is valid. A lot of OSDDID systems go through very similar experiences, and you’re not alone! Secondly, I’m very sorry you had to go through what you did, and I’m happy you’re still up and kickin’. I’m proud of you, and you should be, too!

Trauma is trauma is trauma. Even if the later trauma seems “worse” to you, it doesn’t negate what happened before that. It’s still trauma, and can still cause you to develop OSDD, like your therapist suggests. Trauma doesn’t just mean “JUST this kind of abuse”, trauma means something, anything— abuse of ANY kind, natural disasters, neglect, bereavement— anything. And it all depends on how that affects you. Ableist discrimination is absolutely trauma, and I think you’re doing yourself a disservice by negating the effect it has had on you. It also surely falls under the label of “repeated”, giving you an inability to recover and get up from the last hit before you’re being kicked down again.

Your therapist is right— you can’t form a system that late. But it seems that you already had your system, and that trauma absolutely did not help.

I would call you traumagenic. This rings every bell it needs to ring for the alarms to go off as “OSDD/DID” to me, and I’d also like for you to know that all of this in and of itself is enough. Your trauma is enough. Don’t you ever let people make you feel like what you went through isn’t enough. A lot of people do try to convince people with OSDD/DID that their trauma wasn’t enough, and that can lead to them thinking they’re something other than what they are— but that’s not the case. Not to mention that you don’t have to remember your trauma to have gone through it. Even in OSDD, where there is little to no day-to-day amnesia, there is oftentimes a great amount of amnesia around childhood trauma that you may not even realize is there.

I don’t think you need to call yourself extratraumagenic, to be honest. I think that you have a very common experience that many others with OSDD have, and that you should give yourself the validation and time and care that you need to heal and to accept your situation. I’m sorry that this has all been so confusing for you— you’re not alone in that. I’m glad you’re getting the help you need, and I hope that you’re able to heal and process that trauma and get to know your system and all of the other wonderful things that come with healing.

@dilatedtipsy asked,

I wanted to open this up to to any other employed person with DID, because unfortunately I don’t think my answer is very good.

We’ve been in the same boat! Most of us don’t like our current job, or trade in general, let alone the idea of traditional work. But what actually keeps us going to work is the fact that we have to.

Unfortunately with our situation, we don’t really have another choice. We were kicked from the nest way too early and ill prepared, with no support system, we have to rely on ourselves to guarantee stability. If we don’t work we’ll end up homeless or broke, etc etc., and that’s what keeps us “motivated.”

We all have different wants when it comes to life, but we all want to sleep in a warm bed and keep food in the pantry. It’s sadly extreme! But it’s our reality, and the common interests that can get us all to compromise and do it for the collective.

Even with this mentality there’ll be slip ups, we’ve been a full time employee for 6-7 years now, and our current job wasn’t our first.

But! What keeps us showing up to work is the fact that we like stability, we love our cats, and we love each other. And unfortunately within capitalism we need to work in order to keep all of that. Sure, I don’t give a shit about my “craft,” but I do care about the other parts of me who enjoy eating raw broccoli and taking hot baths. Things that need to be paid for with the money we make from working.

My advice may not apply to you, which is why I’d like others to add on!

A lot of us don’t view work as anything more than a chore that needs to be done, in order to  pursue other things that we want. But this mentality can also be damaging without a good work to life balance, and unfortunately I don’t have proper advice for that, since we still struggle with that as well.