So, it's been decades since I apparently went dormant, and I have tons of memories that aren't personally mine, our body is no longer physically dependent on nicotine, but I'm feeling withdrawal like I decided to quit smoking yesterday?
DID is so weird.
(Also posted this in r/DID 8/17)
We have therapy twice a week with a therapist who is supportive and openminded and has some experience with DID. We're coming to terms with the dissociative disorder on top of an existing autism diagnosis (among others, but ASD and DID cover the majority of our issues). After coming to terms with the dissociative disorder, we had to go back and get the parts who express the fewest autistic traits to accept that we really do have both, and now we're realizing all the ways that complicates everything.
For starters, our system is weirdly organized and full of fragments and alters who exist for things like driving, socializing, organizing, etc. There may be a lot we still don't remember but a huge percentage of the alters and fragments weren't created from anything close to big-T trauma. I'm fairly certain that our first alters were created by a genius autistic kid who needed an army of well-behaved, outgoing children to fill in for them as the child of fundamentalist christian missionaries who couldn't tolerate their real kid. There are layers of the system we haven't explored but the more we consolidate in the system, the more pronounced our autistic traits get, so a huge part of survival for us was masking.
So, our system is confusing, blended and layered, and we're compulsive about a lot of things so we work a lot on our system outside therapy. We a really hard time trusting anybody - especially anyone in a caring role - and our system is always evolving and so are the alters. We're lucky to have a therapist who understands DID at all, and it would be really nice if we could slow down and trust her to help us instead of just updating her twice a week on who fused with who and whether that looks like it'll stick. I wonder if our need for independence and control is partially because of autism or if trusting therapists is just hard with trauma and DID or ... all of the above?
If you're autistic with DID, do you have trust/control issues, or issues communicating about your system, and have you figured anything out to help with that?
We have therapy twice a week with a therapist who is supportive and openminded and has some experience with DID. We're coming to terms with the dissociative disorder on top of an existing autism diagnosis (among others, but ASD and DID cover the majority of our issues). After coming to terms with the dissociative disorder, we had to go back and get the parts who express the fewest autistic traits to accept that we really do have both, and now we're realizing all the ways that complicates everything.
For starters, our system is weirdly organized and full of fragments and alters who exist for things like driving, socializing, organizing, etc. There may be a lot we still don't remember but a huge percentage of the alters and fragments weren't created from anything close to big-T trauma. I'm fairly certain that our first alters were created by a genius autistic kid who needed an army of well-behaved, outgoing children to fill in for them as the child of fundamentalist christian missionaries who couldn't tolerate their real kid. There are layers of the system we haven't explored but the more we consolidate in the system, the more pronounced our autistic traits get, so a huge part of survival for us was masking.
So, our system is confusing, blended and layered, and we're compulsive about a lot of things so we work a lot on our system outside therapy. We a really hard time trusting anybody - especially anyone in a caring role - and our system is always evolving and so are the alters. We're lucky to have a therapist who understands DID at all, and it would be really nice if we could slow down and trust her to help us instead of just updating her twice a week on who fused with who and whether that looks like it'll stick. I wonder if our need for independence and control is partially because of autism or if trusting therapists is just hard with trauma and DID or ... all of the above?
If you're autistic with DID, do you have trust/control issues, or issues communicating about your system, and have you figured anything out to help with that?
We're struggling a ton with distinguishing between what parts of our trauma were actual abuse (for which we have very little memory) vs. beliefs about hell and what it means to stay out of it. It's especially relevant because our littles are nested deeply in our system which has too many alters for us to know them individually. It's destabilizing to have alters from the innermost layers at the front, so we just have to say things that seem to soothe them and sometimes it's a guessing game.
Some child parts in our system didn't experience "abuse" as much as brainwashing. They don't project memories of actual horrific events, but we feel their absolute terror when we do things that go against our extreme fundamentalist upbringing. Blanket statements like "you're safe now" to alters who believe that to be safe is to have perfect motivations and behavior just confuse and upset them. They're the kids who spent their entire childhoods scared that they weren't really "saved" or that some selfish, jealous, or angry thought right before they died would send them to hell. They would climb into bed with our parents because if the rapture happened, they wanted to be able to grab onto them so they wouldn't get left behind. When they're aware of all the ways we've abandoned our upbringing, the panic they feel is excruciating and floods the system out of nowhere.
The traditional trauma-treatment model goes something like, "It happened, it was real and you aren't making anything up, but it's not happening now, and you're okay." But when you were f***ing brainwashed into good behavior with threats of hell... It seems like we have alters who were so scared of doing anything bad they have zero memories of abuse, just abject terror that sends our resting heart rate through the roof when they're near the front...
"You're safe now" means nothing to a ten year old who isn't scared of anything in this world but is scared of annihilation in eternity. And "It isn't real" or "it wasn't real" is perilously close to invalidation for alters who may have experienced both abuse and brain washing, but the alters with off the charts anxiety don't remember abuse. We're just trying to think of safe, soothing statements that counteract religious fear and aren't going to invalidate other alters. So "God is love" or "God isn't angry" ... "you aren't in trouble"... "no one is angry with you or us" ...
Or any other ways to soothe alters who we can't bring all the way to the front right now?
I'm just really struggling, wondering if there are other alters like me who became self-aware after the life I thought was fine had already fallen apart.
I'm an alter in a large, intricate system. A lot of us in the system have been separated from ourselves across our whole timeline - sort of chopped into pieces. Most parts in the system fear reconnecting to younger parts who hold anxiety and pain. I'm a major exception. The younger parts of me are the ones who remember the good things, friends at school, jobs we liked having, functioning well and were really content until we all reconnected. The older parts of me remember the disintegration of our functioning because of DID we didn't know we had... along with the realization that the marriage we thought was fine was abusive and nearly destroyed us.
I'm not the host. I'm just a part that functioned really well and had no reason to think my life was built on delusions. When I'm at the front now, my anxiety is as bad as the anxiety of young alters who hold trauma. On behalf of alters like me:
Please don't tell us the hurt is in the past, that the trauma is over, and we're "safe now". For some of us, the trauma is brand f---ing new because we weren't there for the abuse and trauma when it happened. Now we can't imagine looking forward to anything "better" because what we thought we had was pretty good and it turned out to be a delusion.
Our system is very big and complex and most of us are really motivated to get back to a functional life which we haven't had in about 9 months now. As far as we can tell any two alters who want to fuse just decide to do it and it happens. That is true even when they unknowingly fuse from different areas of the system. We've had that go very wrong in some cases like when a bunch of complex alters who had no idea they had their own alters fused together and then started expanding, pulling alters out of dormancy and triggering people all over the system. Or we've had it complicate things and cause a separation between the alters later on when a gatekeeper closed off the area where one of the alters was from. But it hasn't been a universal failure which is concerning because alters think, "Well, maybe this time...."
We haven't fully mapped our system and we have a lot of dormant alters. Dormant alters seem to represent like an impassable bridge in the system that forces alters on either side to only communicate in the external world and it makes it hard to know who is really connected to who.
The best advice we've gotten on large systems is to fuse from the smallest alters and fragments to the largest. That makes perfect sense to me and we've seen how not doing it that way can go wrong. But we have hundreds of alters who can do what they want so I thought I'd ask for examples of what can go wrong with fusing across subsystems to help discourage it? Everyone hates being this large and complex and they don't want to wait for us to map the whole system to fuse.
Does anyone have any cautionary tales we can share with impatient alters?
We're working on coming to terms with having hundreds of alters and about a dozen former hosts we know of. When we stay fragmented, we can all blend and flow in and out of the front easily, and you can't tell when we switch. The feeling of being one person is a pretty regular phenomenon. Except that we can't be deliberate about anything, can't plan, can't remember why anything is important or why, and big groups of alters move in and out of the front as they're triggered or disinterested in what's happening... and when someone is upset or engages in maladaptive stuff, we have no control over it...
So, we realized we have to put up barriers and choose people to front and fuse alters into larger alters which we're working on, but we're struggling with the paradox. We have to do what feels like ignoring most of the system to focus on one area at a time. And we know that as we fuse into larger and larger alters, we become more separate and independent which I think means we're probably going to have more conflicts. It's hard for a lot of us to accept that we have to become more distinct in order to cooperate because we can't heal everyone together.
Our last host tried to fuse with anyone who wanted to. She didn't realize that she was actually fusing with complex alters who also had alters and she was incredibly overwhelmed and didn't understand why... and broke back apart from everyone. If we just have one person who is fusing with alters slowly as they process trauma, that could literally take forever and alters who we know about now may have to wait a decade ... or we can fuse in groups which would, ironically, increase separation and possibly conflict but - we hope - give everyone a place in our current life.
I guess there's the option of something between those two as well. Are there other approaches I'm not aware of? My therapist has worked with DID but not a huge system like mine, and I can only find one academic paper on healing large systems. The more we fuse, the more identifiable we are as separate, and the more deliberately we have to choose who is in the front. If anyone else has struggled with this paradox, I'd love any additional perspective.
I've been working with a therapist for about six months on DID. I asked her to leave my diagnosis as PTSD because I'm stable enough to do outpatient treatment and don't want to deal with the stigma. But I needed to meet with another clinician who did assessments for me in the past because she could help me complete paperwork for social security disability. She's a neuropsychologist who diagnosed me with autism and ptsd a long time ago. I wasn't asking her for a diagnosis but I wanted to meet with her to update records on everything else so she could do paperwork. So, I explained that I was in treatment for DID (but wasn't seeking the diagnosis from my therapist or her) and she launched into what felt like an interrogation about my trauma in childhood, told me I would have been diagnosed with it earlier, and that I would have black-out memory loss if I really had DID. She's a neuropsychologist who mainly does assessments for cognitive functions, so I wouldn't expect her to have seen a lot of people with DID, but still, I was jarred.
I have memory loss but I don't have a memory of my memory loss. Our system is large and there's a lot of blending which allowed us to go undetected for a long time. And most of our memory loss is like someone took the memory and put it through an editing program to seamlessly remove specific things. Someone has to tell us about something we don't remember saying or doing before we know anything is missing. I have ideas of what might have happened but what difference does it make? I'm not trying to prosecute anyone. I just want to heal. Why do people expect people with DID to remember what was so bad that they have amnesia for it AND to be able to describe how bad that thing was to someone they barely know?
We're just overwhelmed and maybe looking for ...advice? or encouragement, I guess. Or anyone who can tell us there's a way out of this kind of confusion.
We're a system that thought we were more of OSDD system because our memory loss wasn't that noticeable and transitions were subtle. Originally, we thought that meant maybe our trauma wasn't so bad healing would go quickly.
Then we realized we had a few alters that had their own alters... and then that most of us are in some kind of cluster of alters in which only one alter at a time can front. We quit counting somewhere around 80-100. My best, almost-certainly-wrong guess, is 150-200. We know there are gate keepers and managers but they seem to have different areas and roles we don't understand. They will help us move alters in and out of the front but don't identify themselves or share a lot about how things work. Our therapist has worked with DID but not with someone who has this many alters. It's a long story but the alter who was our host couldn't keep doing it, so no one really feels full ownership of the body's identity.
If you have a lot of alters, how the hell do you organize anything? Do you have managers and what did it take for them to feel safe sharing information? Was it a shock when you realized how many of you there were?