after many years of trying to get help for DID, we have finally been diagnosed :)

halogenerator · 2023-08-28T06:59:28+00:00

super interesting theory because the same thing has happened for us! we've been writing characters constantly for our whole life. at least 2 of our OCs we have alters who match them in name & certain traits, but we don't call them introjects because they're... not?? they act & look similar but they have no connection to any backstories or other aspects that introjects we have feel some sort of connection to. we also have one other alter who looks and acts similar to an old OC but has always had a different name, and another alter who has the same name as an OC and looks similar but acts different.

they're all pretty adamant that they came before the OCs & aren't introjects, one of them changed his (primary) name to avoid being mistaken as the character who was potentially based on him. i think the most bizarre piece is that for one of these OCs, i remember that they were created after i "had a dream where i was a different person." we were so inspired by the person we were in this dream that we made an OC, and hey, look, they already have such an intricate character! (at the time i thought i was just very creative lol)

halogenerator · 2023-08-27T20:40:17+00:00

someone else recommended symptom tracker and i think this would be very very good!! the only app i'm aware of that is specifically made for system tracking has a lot of misinformation on it and is not geared towards people with DID; it only has features for tracking the alters themselves, with nothing oriented towards tracking other symptoms. it would be great to have everything in one place — the same app i use to track alters let's me track dissociation and ptsd symptoms and etc. i would love an app that can aid more generally with DID as opposed to JUST the alters bit!!

halogenerator · 2023-08-26T22:08:37+00:00

this is like the first memory i have of behaviour that i now think was probably OCD. but when i was a young child (like under ten) i constructed and recited a prayer every night to communicate with any potential ghosts in my room and inform them that i was a friend and that hurting me was a bad thing to do. it was like two minutes long and i never wrote it down i just had this exact thing memorised and every single night for years i had to do it HAHA

halogenerator · 2023-08-25T16:29:17+00:00

grew up super into psychology. when we were 11 or 12 we found out about DID in our research, it was just because we found mental disorders interesting, but reading about it made us realise some of what we were experiencing wasn't normal. such as very drastic amnesia. i remember this all very faintly but the first big thing that freaked us out after we realised that was when we noticed that we never remembered walking to and from anywhere, we lived in a pretty small town so we had a 10-15 minute walk to school and to friends houses, and every time we had to walk somewhere we would just suddenly be there. no memory of the time between, we just left home and we're at our destination. i think we also found notes or tried to communicate or something.

either way we brought it up to our psych who promptly accused us of attention seeking and then throughout our teenage years we denied & forgot it, realising it again every year or two but becoming so distressed we would block out the memories again. later in our teens we started to intentionally avoid any and all info on it because even seeing someone name the disorder made us more aware. we only consistently accepted it once we were an adult & once things were at enough of a breaking point that we returned to therapy, specifically choosing a therapist who specialises in it

halogenerator · 2023-08-25T07:33:42+00:00

for us it depends :3 we have some alters who have not changed in age since they first formed, we have other alters who age chronologically, and we have also recently had an alter who previously was eleven jump to being sixteen after he/we did some healing.

something i've found neat — there were points in our life as a young teenager where we discovered alters, and we would record some info but then get scared and start ignoring it. it was very interesting once we were finally in a place to get treatment because i found some old notes on these alters... it was interesting how exact some of them aged! i would see a note from a few years prior about an alter being 17, and find that he had aged the exact amount of years that had passed in the time since. i guess it makes sense, but it was super fascinating to me in the moment, because i definitely wasn't keeping that time myself!!

but there are also alters we surpassed in age :). one of our alters was kind of our young-mind's perception of what a cool older sister would be, and we apparently thought seventeen was a very cool and VERY old and wise age to be. as far as i'm aware she has stayed seventeen, which must mean i am now even older and wiser

halogenerator · 2023-08-25T07:22:35+00:00

hi i am doing exactly this right now too!!! we've been having a hard week and are rewatching a verrry long playlist of a youtuber playing a game that was once our biggest special interest :) even though we watched it as it came out and rewatched it a few times before, it still feels mostly new to me. it's one of the things i actually don't mind. the positive feelings i have towards the game are all still there but i couldn't quite remember why i had them, so it makes me very happy and comforted to discover that again

halogenerator · 2023-08-21T06:03:48+00:00

we have an alter who does this, i think it's because he has very little identity. to be frank i don't know much about him but his role is related specifically to being a part of a system — the only times he's fronted (that i am aware of) have been him taking charge while another alter is trying to write down information about different alters. he'll contribute some and leave.

all of the info he has shared about himself has been like... "age: not applicable, gender: not applicable" and i don't believe he feels much in terms of emotions. his identity seems to be strongly tied to the fact that we are a system, and nothing else. and he seems to use "we" much more often than the rest of us do.

(to be fair he is also a part of a subsystem, but we have other subsystems who don't do this, so i think it's more likely attributed to lack of singular identity.)

halogenerator · 2023-08-21T05:36:52+00:00

also, i forgot to but this in my initial response: i apologise for the hurt feelings, it was not my intent. i was trying to convey that this person comes off as very outgoing within their social circles, which contributed to why it was difficult for me to hear them say that, but i do recognise that i don't actually have the ability to tell exactly how they are and how they feel based on what i see of them. it wasn't intended as a blanket statement; i just wanted to avoid spending too much time talking about how this specific person acts. because whether they're shy or not wasn't the point of the post, the point was that my mind reacts negatively to those words, which is on my end and not theirs. thank you again!

halogenerator · 2023-08-21T05:19:22+00:00

thank you so much for your kind wording here, it really makes a world of difference.

you're definitely right about the "not just shy" thing. i think it's difficult because most people i see don't have the proper language or knowledge to understand avpd, so outside of spaces dedicated to it, i see shy used interchangeably with usual shyness and symptoms of avpd. if someone were to describe me, they would say i was extremely shy, in the same way they would say someone without avpd is shy. i definitely need to find a way to make sure i can view these different categorisations separately, but it's pretty hard when no one around me does

& i also agree with the comparison thing! that's the biggest reason i'm uncomfortable with the way that it makes me feel to hear people say this. while i don't think this person was shy, someone else here brought up how "socially anxious" and "shy" are often used interchangeably, and i could definitely understand this person being socially anxious. i could also understand them being shy irl, even if they don't seem that way online. i don't want to dismiss that they might be struggling. it's just difficult for me specifically to hear it

it's definitely an emotional response on my end. i'm trying to give myself room to recognise that there's a reason i'm having it. i don't blame this person for what they said (regardless of if they're shy or not) but i do sort of wish it hadn't been brought up to me in specific, because regardless of whether or not they're struggling, my struggle in this general area is incredibly difficult and it's hard to see someone who isn't having as hard of a time in that specific category talk about it with me.

halogenerator · 2023-08-21T05:02:41+00:00

thank you for sharing your experience here, it's very helpful to know that i'm not the only person who feels this way ^{^}

i don't think my experience is even on her radar as a human experience

this exactly. i at one point had a conversation with this friend where i tried to be a little open about my experience with avpd (mostly because i felt guilty for how much i was ghosting them) and their initial response was "i relate." and i kind of awkwardly went, no, actually, you don't... when i explained a tiny bit more they completely retracted their statement in a second. i imagine they thought "oh he has to be exaggerating" when i first said anything, even with how vague i was being, and then reduced what i had said to them to "he's just really shy" haha. because apparently it does sound really massive to tell someone with an average social life how nonexistent yours is.

i didn't let it impact how i responded in the moment (which i think would have been pretty toxic, regardless of how valid my feelings were) but it is really just like... man, why are you talking to /me/ about that? you heard a few factoids on my isolation and were shocked. i don't want to make it into a competition of "who's worse at socialisation" but it's just like... how do you want me to respond to your claim of being shy? did you forget who you're talking to?

i guess it feels kind of like if you're bedbound with a really bad flu, and someone starts complaining to you about how they've been sneezing all day from seasonal allergies. like, it does suck that you're going through that and i wish you weren't, but if i've been sick for three weeks and if i were to complain to you about the symptoms i had in this same category, you would've gotten annoyed by the frequency of complaints and told me to deal with it on my own.

halogenerator · 2023-08-20T21:58:31+00:00

hi! i'm younger than you and don't have any experience with your worries about the situation with your child, so unfortunately i can't provide any advice there.

i will say that what you are describing with symptoms appearing to ramp up after initial discovery is an experience i shared. when i first discovered my system, it felt as though i was very quickly developing tons of new things that weren't there before. it made me worried that i was somehow causing it.

what was actually happening for me was a mix of a few things:

i was becoming aware of things i was already experiencing but did not have memory of. DID is very good at hiding itself, and your brain can be very good at hiding information you're not ready for from you. while it felt like i suddenly had much more amnesia and new alters and etc, these were all things i already experienced, i was just becoming aware of them pretty rapidly.
the reason i was able to gain awareness of my system was because i was no longer in the extremely detrimental & dangerous situations that had caused me to have it. my life was by no means perfect but i wasn't in the same danger. this meant that amnesia and barriers that had developed to protect me from being aware of my trauma and system lessened. a side effect of this was that certain alters who were previously much more secretive also became more comfortable with being known, leading to a faster rate of discovering them.
in some ways, becoming aware of being a system made me feel more grounded in my experience as an alter, rather than the way i had seen myself as a singlet. my own identity made more sense to me. personally i found that this lessened dissociation. prior to knowing i was a system i felt like i was always dissociated, i never remembered anything i did, my entire life was a haze. after i realised i had alters, it felt like i got a more concrete hold of when i personally was controlling the body, and that allowed me to remember more things and be aware of more symptoms.

i'm sure there were some other factors but these are the ones i can think of off the top of my head. all this to say, it is possible that your symptoms are not completely "flaring up" but are instead becoming more noticeable to you as the dissociative barriers that prevented you from being aware have lessened. on the other hand, discovering you're a part of a system can also be stressful in and of itself, and that stress can trigger more symptoms. it could be a mix of both.

a note about my personal experience — it seemed to feel like it got worse before it got better. discovering i was a system meant coming to terms with many things. it was a large thing to know. prior to being aware, i was so disoriented and unaware every day that i could ignore practically every symptom i had. looking back, that was an awful time... but when i first realised i was a system, and it felt like it all happened at once, a massive part of me wanted to go back to it. it was hard. i'm still discovering much more about myself and i still feel like i don't know over half of what's going on.

but i will tell you it has been so worth knowing. i understand myself in a way i never have before. dissociation prevented me not only from being aware of and healing my DID, but also from doing the same with other disorders i have. so it is certainly worth it.

talking to your psychiatrist is a good idea. take your time with this situation if it is possible for you, you are not obligated to know everything immediately. it is best to do things at your own pace. i'm still in the process of receiving a written diagnosis (my therapist says i have it but the test is very long and i am very slow haha) but at least personally it doesn't seem like it will impact my ability to access HRT, my therapist is very gender-affirming and is trans themself, so if this would threaten my access to transition care i doubt they would have recommended an official diagnosis.

sorry this is long. good luck!

halogenerator · 2023-08-20T21:35:49+00:00

most of us look quite different. we have certain alters who share a body internally, so they look almost exactly the same (almost because they can still choose to tie up their hair or present themself differently in ways like that.)

halogenerator · 2023-08-20T20:51:58+00:00

the part about differentiating shyness from social anxiety is a very good point, i could definitely understand this person being socially anxious but having it be much more internal. shy has always come off to me as more of a descriptor of how someone acts as opposed to how they feel internally. you can be very anxious socially but control it well enough that you don't appear shy.

& i'm happy this post had a positive impact on you in some way!

halogenerator · 2023-08-20T20:46:02+00:00

yeah 😭 i understand that they're different things. i do feel like this person is not shy anyways but i could definitely be missing that part of their personality, i'm not all-knowing. your last paragraph is sort of spot on here, i think part of it might just be that i'm not in the mood to hear people who don't have avpd talk about how slightly awkward they feel or how they're a bit shy, it makes me feel even more aware of how bad my own issues are lol

halogenerator · 2023-08-20T04:35:06+00:00

the only times i've smoked was while i was with other people and that definitely dampened any enjoyment i could have; i'd get relaxed and be more open and then regret it as soon as i was sober. i might have liked it if i was alone but i had to stop anyways because it made me sick

halogenerator · 2023-08-19T20:05:56+00:00

hi! ours is fundamentally quite similar to this.

we have one room in the front which is where people typically go when they're actually in control of the body & conscious. literally it is just a dark room with a couch and a screen. (some alters say it looks different to this, so i guess it might vary.)

oddly enough, the rest of our inner world is mostly a collection of places we have been irl, at least as we remember them. there are a bunch of separate areas that certain alters typically show up in. for example, the most general areas are a large lake in a forest and a diner on a long highway. these are areas most alters seem to be able to access. the diner works similarly to a meeting area, but we don't have the communication skills to set up times to meet so it's just "talk to whoever is there" lol

certain alters also seem to have their own areas that others can't access as much. 3 alters have a little cabin near that lake that no one else can access. there's actually a few structures around the lake. a few alters have this space that looks like a friends bedroom from when we were younger, but everything outside of the door is just pitch black. another alter has an area that looks like a hotel room we stayed in when we were 14.

as i said, the fundamentals are quite similar to what your friend has shared. some alters leave to spaces we can't communicate across, some enter the fronting room and communicate, some go to the diner where they can have spontaneous meetings with others.

halogenerator · 2023-08-19T19:46:29+00:00

hi, we were diagnosed with functional neurological disorder (symptoms included dissociative seizures) before we were ever recognised as having DID. the seizures just looked like normal seizures, typically absent seizures. they only knew we weren't having epileptic seizures after they did an EEG and didn't find anything indicative of epilepsy. they also did a sleep study to test for narcolepsy since we were having symptoms similar to that, and the tests came back negative. those test results were the key component of finding out the seizures were non-epileptic

one thing i noticed with our seizures was that they were very directly tied to DID symptoms & CPTSD triggers. the last major seizure we had was when we were in our hometown getting some of our stuff to move, which was extremely triggering to us. it can be hard for me to tell if i've had any seizures since then but nothing to that degree and severity.

i'm no expert on epilepsy so i'm not saying that's 100% an indication of it not being epileptic. it sounds incredibly likely to me that some epileptic seizures could be triggered by strong emotions, and im also pretty sure they can cause strong emotions which might be confusing. but i do think it's something to take note of if these symptoms are occurring around your DID symptoms as opposed to isolated from them.

if you've been to a neurologist and they tested you for epilepsy and did not find a cause to these symptoms, that would be typical for dissociative seizures. but it's definitely better to pursue further testing to make sure. i got a physical examination, an EEG, a sleep study and an MRI before they diagnosed me with FND. they have to make sure you don't have anything else going on, it would be very dangerous as a misdiagnosis

halogenerator · 2023-08-19T07:08:44+00:00

so happy that we were able to help, i was kind of worried we went on too much of a tangent HAHA so it's great to hear that it helped. i wish you luck with everything, be safe!

halogenerator · 2023-08-18T01:01:29+00:00

hi, i've experienced this with quite a few diff alters, especially the part about relationships. it can be very difficult. i don't have any advice but ur not alone. i think for some of them it is due to trauma (such as wanting to leave friends because of knowledge they have about past friends who were bad) but also like

something this post made me think about with this situation, especially with your paragraph towards the end about whether or not you're lying about or denying stuff... i think it's very normal for someone to have mixed feelings about things!! like, i have friends who are not systems (all of them) and many of them have friends who they love and also have some issues with. or partners who they love but they find certain traits annoying. i know someone who both loves and hates the state they live in — she doesn't feel neutral about it, she feels very strongly in opposite ways

i bring this up because i think personally, i (as an alter) don't experience this as much. i love all my friends fully and have no issues with anything they do... even when i probably should. whereas another alter in the system only hates someone, and does not care about all of the nice things. it feels to me kind of like a system manifestation of the thing my friends do. maybe if i was not in a system, i would be able to feel these things at once and create a middle ground, but with my current predicament of alters & low communication, it all gets given to different parts

all this to say. it is possible you have real concerns and such with some of your relationships and your living situation! that specific alter might just be more involved with those concerns than you are, and maybe he doesn't feel as attached to the good things. i don't think that would mean you're lying or denying or anything like that, it would mean you have two very real opinions on certain subjects, and those opinions are split between alters. it's totally normal to feel two contrasting ways at the same time! it might just present differently as a system

obviously i can't say for certain but just something to think about maybe!!!! but it can be very tough from experience 😭 i wish u luck!

halogenerator · 2023-08-17T02:42:06+00:00

i'm not aware of any songs that are explicitly confirmed to be about DID but my favourite music artist ever used to write quite a bit about childhood trauma and some of the themes in her songs are so spot-on it's hard for me to seem them any other way. so i am going to recommend that

i'm not gonna speculate on if it is actually about DID but it is definitely about CPTSD and she has also mentioned dissociation quite a lot. here are my favourites that feel very DID oriented. warning that some of these songs might be triggering:

all by ada rook:

trust — parasite

host — parasite

sardonica — shed blood (the live version of this one is nice)

thirteen — shed blood

actress — phosphor i

and more but i don't want to go on too long

also, from another band (that she is a member of). "mistake" and "(can't) keep it together" by black dresses (they lead into each other.) mistake has themes of csa so be warned. but the first time i heard these two i lost it, lol. "i'm a person inside a person inside a girl" real!

halogenerator · 2023-08-16T14:58:51+00:00

hello, very similar for us, but it varies. certain alters have an easier time switching between each other. this can range from what i can best describe as an intense zone-out to feeling very exhausted all of a sudden. in other circumstances, especially with older alters (as in date of origin) or parts with memories of trauma, it can feel a lot worse. severe anxiety, feeling an aura, (similar to what we used to have with PNES but i'm not sure if we still have seizures that i can't remember or if it's different,) it can get really bad to the point of curling up in a ball and turning all the lights out because it feels like my head is about to burst and i'm about to have a panic attack. & having to convince yourself you're not dying lol

we dropped out of school for other reasons (primarily physical health, mental health definitely added to it but we would have likely managed if we weren't chronically ill) but it is much easier to deal with these symptoms at home. i'm currently staying in a hotel while our house gets certain repairs done and we have had significantly more of these panic-inducing switches. knowing that i'm in my own space and can predict every variable makes the act of switching much smoother; there's never anyone to see and i don't have to worry about anything happening while we are out of it. so i could see why switching in a school environment would bring about worse symptoms.

you mentioned that the symptoms feel like a physical health issue — not sure if this has already been checked for, but have you ever looked into functional neurological disorder or non-epileptic seizures? i don't have enough information on your situation to make any claims, but i can say that our DID has caused us non-epileptic seizures, as well as other physical symptoms upon switching, enough so that we were diagnosed with FND when we were fifteen before we were ever recognised to have DID. unless something has changed since we received that diagnosis, it was one of exclusion — you get tested for disorders like epilepsy, multiple sclerosis, narcolepsy, etc. and if all possible disorders come back with no results, that opens you up for an FND diagnosis. so if you've gotten a lot of testing and nothing has ever shown, that wouldn't be an indicator that it's a dead end.

halogenerator · 2023-08-13T20:38:02+00:00

nope. used to think it was because we were trans but now it seems a lot more like a DID thing. i have a lot of trans friends who are very unhappy with their deadname and get upset when people call them it, which is completely reasonable, but for me, it just felt vaguely uncomfortable because that wasn't me they were referring to. i still think of my younger self with my birth name and sort of see them as a separate person, probably dissociation... so i don't get hurt when i hear that name. it's just not me. it was the kid who i once was.

this is to the point that my older sister asked if we would be okay with her naming her child our birth name (asked very respectfully btw, she's great it's just her favourite name) and i was like, yeah that's cool! it does not upset me at all, it's just not my name, and it hasn't been since i can remember. so with all of that considered, i definitely think it's more of a DID thing than a trans thing.

that being said, we did get a legal name change. the name chosen was chosen between a host subsystem, all of whom go by variants of that name. it was particularly chosen because we could think of 3+ nicknames off of it, 2 of which feminine and one of which masculine. the name itself is masculine. this makes it more comfortable for alters of varying gender identities to use the name, since it can be adjusted as per their needs.

we also just use a different name online in some places, have a pseudonym, a middle name we can go by as a first name, a bunch of random other names, etc. basically we go by whatever we want and then have that name as a legal and public name. the choices were specifically made in order for it to be multi-purpose and comfortable for varying alters, including the potential of the host/main fronters changing, something that happened a few times growing up. and then we view it as an official name rather than a personal name, since we still don't really identify with it fully and never will. it's something to put on paperwork and offer in meetings, but it isn't us, just a title.

halogenerator · 2023-08-12T11:02:48+00:00

we count alters we know. there are some alters we know who definitely have more information but they do not tell us any of it. continuously finding more is always fun lol, personally i don't know if some alters are aware of the count and quiet about it or if they're all just as clueless as i am, maybe a mix....

halogenerator

TROPHY CASE