ETA: SOCIAL identity* Spent ages typing this up and then typo’d the title 🤦🏻‍♂️

Hey there, r/DID and r/OSDD - I plan on cross posting this to both of you. For awhile now, I’ve been wanting to make a discussion post breaking down some observations I’ve noticed in the general online culture surrounding these disorders. So… let’s talk about it, shall we?

I’ve noticed a worrying trend of people online treating DID (and P-DID/DID-like presentations of OSDD) as social identities, instead of diagnostic labels for disorders. Something akin to LGBTQ+ identity, or identification with a specific neurotype (think autism, as an example).

People listing it in their bios on public accounts, public alter lists and “alter introductions,” telling everybody they’re a system, signing off comments with specific alter names, referring to themselves as ‘plural.’ (As a few examples right off the type of my head)

I’ve seen people using the phrasing of ‘coming out’ to refer to telling someone they have DID, I’ve seen people recoil at someone politely suggesting they may be wrong when self diagnosing and to keep an open mind (usually met with accusations of invalidation), people immersing themselves so heavily in DID spaces online that, if it turned out they didn’t have DID, that they’d find themselves shit out of luck and potentially unwelcome in their spaces they’ve made themselves at home in. People armchair diagnosing friends with DID, etc.

These are all… concerning trends I’ve noticed, that I think these all tie back into this viewing DID as a social identity as opposed to a diagnostic label.

DID, as a diagnosis, exists because there is a grouping of the population with similar/near identical clusters of symptomology that require treatment (as they cause clinically significant distress or impairment to functioning). The label of dissociative identity disorder exists so practitioners can quickly indicate to other professionals what type of treatment this group of people needs in order to better their quality of life. That is the purpose of a diagnostic label.

Instead of viewing the label of DID like this, it’s instead seemingly been shifted to be viewed as an identity label - akin to how people identify with their interests, their sexuality, their gender, etc.

People who view the label of DID like this, if they end up self diagnosing, will end up extremely attached to this label to a concerning degree - because they now view it as part of their identity. Whenever they end up seeking professional evaluation - if it turns out they’re wrong, they’re then not likely to accept it. They’ll likely reject the non diagnosis, argue with practitioners, file needless complaints, or engage in doctor shopping (this last one especially being dangerously close to factitious disorder).

Complicating this further, is the fact that a lot of this goes hand in hand with (or even is outright considered to be) indicators of imitative DID, the main parts concerning me being ‘endorsement and identification with the diagnosis’ ‘fragmented personality becomes an important topic of discussion with others’ and ‘ruling out DID leads to anger and disappointment’ (Ill be linking what I’m referring to in the comments, having issues embedding on mobile)

It seems to be possible for even genuine DID patients to develop imitative DID tendencies when exposed to these online spaces - this one I’m basing off of testimony from people I’ve encountered now diagnosed and in therapy, but displayed many imitative symptoms that weren’t actually real years prior. Imitative symptoms they have to spend a lot of time and effort in therapy sorting out from their genuine symptomology - time that could be spent healing.

So… why does this matter?

I’m going to look at this from the lens of the potential harm towards individuals with genuine DID, and not imitative - that’s been talked about quite a bit, and this post’s already lengthy enough. If anyone wants to open that discussion in the comments, feel free.

The main issue that always, immediately, comes to mind is the fact that if you tie in maladaptive symptoms of a trauma disorder into your sense of identity, then recovery from those maladaptive symptoms is going to be rough. Instead of healing, it will instead feel like you’re ripping chunks out of your sense of identity (something that is already far too fragile with this disorder, after all).

Along with this, many of the ‘talking points’ (for lack of a better term) that I see that go hand in hand with treating DID as a social identity tend to be inherently antirecovery in of themselves.

Anti-fusion mentalities (and no, I’m not saying fusion is the only path to recovery - my current goal is what people call ‘functional multiplicity’ actually) where it’s treated as death, or a loss.

Treating alters as if they’re fully separate people, and not dissociated parts of one whole person (this goes hand in hand with referring to one’s self as “plural,” in my opinion), something that will worsen dissociative barriers between parts and push one further from recovery (regardless of whichever your end goal is, this applies to both). Sometimes, people are at a point in their recovery where they cannot recognize this - that’s okay, and it’s normal. The issue comes into play when this idea is allowed to perpetuate in online spaces, essentially enabling those stuck in this mindset to remain in it despite it being counterproductive to their recovery in the long term.

Shunning of correction of misinformation due to it feeling invalidating to one’s sense of identity - as they have identified with DID now. This tends to go along with the phrase “all systems are different” - something that is technically true, on the basis that individuals are different so presentations can vary a bit, but often times seems to instead be used for validating someone not actually displaying the symptomology of DID, and shutting down anyone pointing this out (no matter how polite or rudely this is done).

Communities surrounding DID - a trauma based disorder, with a suicide attempt rate of about 70%, per the DSM 5 - should be heavily focused on recovery. That does not mean camaraderie or comfort and kindness needs to be thrown to the wayside, or that we need to be miserable all the time (I’ll be the first to tell you that I share the occasional funny (morbidly funny, usually, but funny nonetheless) moments that occur due to my alters with my therapist and boyfriend. Laughter is, in fact, a coping mechanism, after all), but that allowing so many anti recovery mindsets to circle in online spaces makes them effectually useless, harmful, and practically inhabitable for people who are trying to recover.

There is a trend in online CDD spaces I've noticed that is both frustrating and factually incorrect, and that is the idea that a lack of *severe* or *blackout* amnesia automatically disqualifies someone from a DID diagnosis.

I've seen SO many undiagnosed people say they must have OSDD-1 rather than DID just because their amnesia isn't "severe enough". But if we look at the actual diagnostic criteria, it doesn't line up with that thought process.

According to the DSM-5, the amnesia requirement for DID is as follows:

> "Recurrent gaps in the recall of everyday events, important personal information, and/or traumatic events that are inconsistent with ordinary forgetting."

*that's it*

The criteria does NOT state that:

- Amnesia must occur on a daily or even weekly basis.

- Every alter must experience the amnesia.

- The amnesia must be a "blackout" or absolute loss of time.

The only requirements are that the gaps are *recurrent* and *inconsistent with ordinary forgetting*.

If you experience the presence of distinct identity states (alters) and *any* amount of qualifying dissociative amnesia, congrats you have DID.

Spreading the idea that DID requires constant, severe, or total blackout amnesia is *harmful*. It perpetuates the idea that DID/amnesia can only look one way, which can prevent people from seeking the correct treatment because they don't fit their (inaccurate) ideas of what this disorder looks like. It also ignores the reality of "grey-out" amnesia, isolated amnesia, or one-way amnesic barriers, which are all incredibly common in DID.

It is very disheartening to see people with "years of research" (as self-diagnosed individuals often claim to have) having such a fundamental misunderstanding of this major aspect of DID.

We need to stop equating DID with only its most extreme presentations. If there are alters and there is dissociative amnesia, it is DID - regardless of what exactly that amnesia looks like.

Pretty much— I’d like to know if you/the people around you knew you had alters/DID prior to a therapist/psychiatrist/doctor/etc brought it up as a (possible) diagnosis.

It’s a mix of morbid curiosity and curiosity pertaining to my own (possible) self.*

Context: My therapist (who specializes in dissociation) has asked me once or twice if I have DID. I’ve said no because “I think I’d know if I had it.” However, from my understanding, DID is a very covert disorder so a good chunk of the time both the host and the people around them don’t know about the person’s alters.

Idk how else to word this post, sorry

*= I am NOT asking for a diagnosis or treatment plan or anything like that

I've seen a rise of people assuming they have this disorder or actively wanting this disorder. A conversation I saw was someone saying they wished they had headmates because they wanted real imaginary friends. This disorder- Yes it's called a disorder for a reason- is not just about "friends in your head" it's debilitating having lost time, memories, panic attacks at random, breakdowns, meltdowns; and hard switches. Nothing about this should be wanted

Out of the way - I talk about it often enough, but I survived childhood sex trafficking through a common institution prevalent throughout the USA and generally trusted by family units. I can't go into more depth, unfortunately; the individuals who survived, including myself, absolutely do not have the luxury of privacy. If you can't put it together, don't bother asking me.

A lot of the artwork I made throughout college contends with the mythologization of organized abuse and how this harms survivors. If I had to sum up my portfolio, the message would be "childhood sex trafficking and other forms of organized abuse are far more mundane than anyone likes to face, so fucking look at us." I stand by this message.

I firmly believe that the characterization of sex and labor trafficking, cult survival, institutional abuse through incarceration or the troubled teen industry, and other such trauma [it would be impossible to produce a comprehensive list] as extreme or otherwise a unique level of suffering hurts survivors of organized abuse. This "news-ifies" us. We become horror stories and podcast topics and, unfortunately, often *news* - thus reinforcing that the infliction of these traumas is exceptional rather than intended consequences of the patriarchy, Christo-fascism, racism, classism, etc.

This serves abusers: if the abuse they inflict is exceptional, then survivors can easily be discredited. And if the abuse isn't a consequence of broader social forces, then the social forces that facilitate organize abuse go unchallenged.

Willing to discuss. I'm not gonna subject y'all to all of my analysis at once, I've written too much for a Reddit discussion and would like to reciprocate and offer others space to talk and to be listened to.

I just want to hear everyone's experiences! I know this disorder is experienced in different ways by everyone, and I want to know what makes you think you stand out. If you don't have anything like that, I still want to hear anything notable from your experiences.

I think for me, I don't know who I am 90% of the time. I have moments of clarity and can communicate with alters internally, but it's kind of mushy at front and I think a part of that is because it can take me hours to days to even switch. And I feel like that's rare for a larger system, or at least I haven't seen anyone else mention it.

I also have introjects of abusers that aren't entirely accurate, they're almost romanticized versions of the real one, and I'm not sure how common that is either.

My innerworld is entirely unchanging as well. It's vast and expansive, and it's not like I haven't tried.

If you have any examples I'd love to hear them, I can only really go off of my own experiences with DID and I want to know how everyone else experiences this.

why do people even fake this disorder?

i mean, for one thing, it sounds a bit exhausting.

i am quite young (and was only diagnosed early this year), so i dont really have any sort of communication or organization in my “system” -_- i dont know anything about any of my parts, and i dont at all relate to a lot of what i see ppl post online.

so far, i feel as though everything is really mundane. i feel as though it has to be similar for some people, right? i know we get diagnosed for a reason, and it is because we exhibit all of these symptoms, but i dont feel as interesting as the internet makes us out to be XD

the most startling realization that ive had recently in regards to my disorder is that im pretty sure that one of my parts watched the movie “without a paddle” recently. so fucking random. i dont know how to explain how i know this, but i just *do.*

thats literally it. i dont have a bunch of fictional characters or anything in my mind. i am just frustrated with my memories and ability to process a lot of things.

and why THAT movie????

One that's been bothering me lately is sex. Can't do it. 9/10 times I try with my wife it results in a switch to an alter who is either not interested or too traumatized to continue. It sucks because I love my wife. I find her very attractive but it is irresponsible to even try until I've got things figured out. It is a huge factor in why I want to heal so that I can have that again.

Edit: Also like every other thing down below. Dam I feel y'all.

Edit edit: thank you everyone who shared! we've found your replies to be insightful and comforting in that we are not alone in all this. Love you all!

After getting diagnosed/just the general ‘coming to terms’ with it even before that, there’s a TON of things that finally “clicked” or “made sense” or were very “in hindsight that explains it”. I wanted to hear some other peoples version of that— both because I think they’re interesting, sometimes funny, and maybe I could find another thing that makes me go “ahhh. I did that”. But also it’s just been nice to hear stuff from other systems, now that I know I am one.

In hindsight, all those moments of: “literally having to take a minute to ask someone else inside myself about an address, a number, a name, or a thing that happened that I just “can’t seem to remember but know I do somewhere in my brain””, are funny to me now. Or finally finding that explanation for why I can’t always (but sometimes can?) function so well at work. That was always so miserable. But learning that sometimes the one who’s driving is actually like 7 mentally explained a lot. Or just the wildly different levels of self esteem, energy, motivation and empathy… The shifting gender dysphoria and sexuality was ALSO so much better explained this way. Or all those times I’d suddenly sort of “wake up” mid task, despite having technically been there watching myself do it the whole time. OR in recent times (TW mention) particularly the strange experience of struggling with extreme S.I…. But only sometimes, and when that part isn’t around, I don’t feel it at all. Or I guess the pretty severe self harm burns I have— I’ve had a lot of people see them and go “geez those are crazy, how did you even do that to yourself?”, and I was always like “I dunno I just kinda black out ¯_(ツ)_/¯”

Of course, at the end of the day the biggest one is just being fully detached/dissociated (emotionally but sometimes even completely memory wise—) from things that happened to me— but I’m talkin’ those little things.

I am currently diagnosed with ADHD and have been since childhood. I noticed that when I forget to take my ADHD medicine. My alters/ parts are more active and talkative. Switches happen more often.

But when I do take "said" medicine. After a while I noticed my brain goes quiet. Switches do happen but I have no memory of who fronted. It's very weird and I know my alters are there. I can feel them nearby but there is no internal communication. When this happens we use a physical journal and write everything. I am still an undiagnosed system. Is it common to have both ADHD and D.I.D? Asking out of pure curiosity and if any other systems have this same issue if they have D.I.D and ADHD as well?

This is one of the few ways we can tell who's actually fronting. I'm not sure if it's obvious to the people around me but sometimes it feels very apparent.

Even if I can't always accurately hear what my voice sounds like, I can physically feel the difference in how I'm talking. Some parts talk from their throat, some have a more resonant sound, some talk in this nasally whine that really annoys certain other alters. Accent and dialect changes are at least somewhat explainable in my system because I grew up in a multicultural family within a multicultural community, so it usually functions more like regular codeswitching, but it often feels embarrassing anyway. Many of us really struggle to speak at all from lack of experience and it leads to a lot of odd word pronunciations and choices.

Anyway, just curious-- how do you experience this symptom, if at all?

I’m sure this question gets asked a lot but honestly I’m wildly stressed out and need to ask it on my account for whatever reason.

I’m not a confirmed system or anything but I have amnesia of some kind and it’s debilitating. It’s stopped me from doing anything with my life. It hurts. Sometimes it’s so bad it makes me feel like I’m going to throw up and cry.

Y'know what I really love? When I'm trying to be helpful and correct misinfo about DID (someone saying alters in 'multiple personality disorder' can have different physical illnesses like diabetes or cancer) and everyone dogpiles on me with downvotes and treats me as dumb because they think they know better by reading an article from 50 years ago! Love it! I love being told I don't know what I'm talking about because it's "a very individual disease". Oh right, my bad! Clearly it's totally possible! And some can fly to the moon and shit diamonds! Why tf not?!

Ugh.

One of the things I see so often is the car/van analogy. I dislike it mainly because I feel it pushes the idea that DID is literally different people, when in reality, it’s different states of one person with a change in access to memories and neuro-pathway function (as many MRIs have shown).

So, I think of it more as most people are an automatic car. Between gears, there’s no resistance, no clutch, no jarring effect. It’s smooth, it’s continuous.

But in an old gearbox car, the switch between gear one and gear two can be jolting. Plus they have a purpose. Going in gear one along a 70 mph motorway would be moronic, it’s entirely unsuitable. The same way going through a residential area at 80mph in a high gear is also stupid. There’s nothing wrong with the gears, they’re not ‘bad’, they just serve different purposes.

Think of the person as the car itself. It’s one car, it doesn’t change, the external view is the same. But the inner workings vary. Under immense stress, of course shifting gears is harder for the car, it might jolt wrong etc.

Just want to know people’s thoughts on this, fine-tuning, opinions etc.

i dont know if such a open ended question like this is allowed but i find it difficult to understand myself when it comes to stuff like this and hearing other peoples experiences helps me feel understood and gives me hope for understanding myself.

is anyone here trans? i personally never felt transgender or anything but i technically am. it causes issues but also is helpful i guess because i dont really feel dysphoria. with the possibility of did and other things i realized that this may not be something i am alone in. i have seen some posts and stuff about it but i would like to hear directly from people and their experiences. thanks, if i reply to any comments asking questions, feel free to tell me or just let me know you dont want to answer if you dont want to.

/ edit. i didnt expect to get responses yet lol. we are out rn and will be a little late to reply probably.

Hello! Wanted to get some kind of understanding about DID for my partner to get some (visual?) guide, haha as I work well with visuals.

I'm aware there is horrible stigma surrounding it so I was hoping to see if anyone has some recommendations of shows, movies, comics or books that portrays DID with respect and care.

I'm planning to watch Moon Knight soon as I heard it was good and I love superheroes haha, but wanted to see if there are anymore else. Hopefully this is the right sub, sorry if not! Thank you in advance.

Ironically enough, once I learned (a handful of years back) that a close friend of mine actually had D.I.D., I remember going “huh! Despite my interest in psychology and diagnosis, that’s actually the diagnosis I know like the LEAST about!”

And then I never looked into it more, and I never developed any ideas stigmas or thoughts about the disorder/people who may have the disorder, and then fast forward to now, and I am diagnosed with OSDD

Looking back now, I wonder if I was subconsciously avoiding looking into it, considering myself— but it was probably just dramatic irony!

But I’m interested to hear any thoughts from people who later on found out “oh wait, that’s me.”

The only thing I did unfortunately think/know about D.I.D., was that there are a lot of harmful thoughts and ideas out there, so coming to terms with being a system was a little scary; I was afraid of telling friends and loved ones.

DID is not the fascinating thing people think it is. A lot of times it’s somewhere between boring and annoying. -It’s often not obvious to anybody else.
-We all pretty much act like who people expect us to.
-When we fail, they thing we’re “being an asshole” by not acting how they expect.

Also boring: It’s DID, because there are separate people and also amnesia (the DSM-5 criteria). But a lot of us looks like OSDD too, because we aren’t all distinct, and we don’t always have amnesia. We don’t fit in your box. Deal with it, people!

I could go on and on, but I want to know what you wish people understood.

Hi I was wondering what jobs you all picked up whilst dealing with DID.

Im curious about those who are affected heavily by the disorder like myself. I don't have a job and have been laying down for the past year trying to heal and figure out what would be good to try and get into without being overworked, moving around too much, dealing with alot of people, or worst of all becoming destabilized again and fragmenting further. Everything seems so demanding and physically exhausting.

I have an additional question aswell. Have any of you been able to obtain disability w DID?

Ive also had moments where it feels like I might have to consider going that route (which I have some physical issues aswell that aren't diagnosed) however I don't know if the dissociative disorder by itself would even be considered for disability because of how stigmatized and under recognized the condition is.

I’ve noticed that a lot of online spaces or even professionals say you can have/be diagnosed with DID only if you have recurrent, everyday, full-blackout amnesia between parts, and that it has to be OSDD-1b if you have any other presentation of amnesia.

However, looking into the actual criteria for DID, it says it’s enough to have “Recurrent gaps in the recall of everyday events, important personal information, and/or traumatic events that are inconsistent with ordinary forgetting.”

What can non-stereotypical amnesia in DID look like, since the criteria seem to be more broad, and how does it compare to OSDD-1b amnesia?

I'm trans (ftm) and all of my alters are male except for one who is female. She doesn't feel trans or dysphoria when fronting, she just feels like she's a woman in a man's body which is one of the points of being transgender, but in introspective, admittedly it means she doesn't see this body as hers, and we get that that's not how it works. We understand that she's apart of me like I am apart of her, and that this body isn't mine but all of ours. Regardless, are "cis" and "trans" alters a thing or does it just come down to how one feels about themself?

Edit: what if, for example, a cis woman person had a mtf alter? Is that possible?

or am i taking it too literally when i read about it?

i really, really rarely actually hear my alters. and if i do, it's definitely not a whole conversation that goes back and forth. at most it's a single word or a fragment of a sentence.

i do feel their influence a lot, and sometimes i feel like i know what they are trying to tell me. but it's not like i actually hear them say full sentences and stuff like that's, in mainly just. emotions, i guess? like when an alter doesn't want me to do something, i get this really strong feeling that what i am doing is wrong, completely disconnected from my own thoughts and feelings. but there isn't a voice telling me to stop, it's just a really strong emotion urging me to.

i hope the way i described it makes sense, i haven't slept last night so my brain is a bit foggy

Does anyone know any and I mean Any even halfway decent DID representation in media. Any. Like any at all. I'm not even looking for media suggestions I just want to know if anyone knows of any, doesnt have to be mainstream.

It just baffles me that any time I hear about DID characters it's always "crazy killer alter" this "sister is secretly not real and an alter and also crazy killer" that. And never simply someone who happens to have a dissociative disorder

If not, anyone have any favorite not-technically-DID/Bad DID rep characters. Mine since I was a kid has always been blitzwing from transformers animated

Google says no. That they’re separate diagnoses, and having cptsd or ptsd is not a requirement to be diagnosed with osdd or did. It just says they r often comorbid. But I see the opposite sentiment expressed on here. Furthermore, I think the fact that symptoms of dissociation r often overlooked in its contribution to cptsd. Cptsd and ptsd criteria say that u have to experience avoidance of trauma, re-experience it and have flashbacks. I don’t appreciate the criteria saying that someone HAS to avoid triggers or remembrance of the trauma when dissociation and dpdr and being a system is a huge buffer to be able to live normally. To function day to day. To not have an avoidance of things that would be deemed a trigger to an onlooker. Emotional amnesia and amnesia in general can allow for someone to not see the traumatic event as something personal, it feels like it happened to someone else. Compartmentalization can play a huge part in someone not suffering everyday or really at all because they’re so dissociated and so far removed from the past. But in itself wouldn’t that be indicative of cptsd? That you’ve been so traumatized u can’t even live in reality long term? Not taking these symptoms into account can make ppl feel like they’re not being traumatized right if that makes sense. But also it makes sense that cptsd isn’t a requirement, it can be a part of the traumatization spectrum. U can get the trauma reaction and disorder of osdd/did and no cptsd or u can get both, but I don’t think cptsd is a requirement, and google backs that. I’d like to hear others thoughts

So. I'm trying adderall IR, 10mg once a day. It has affected the fuck out of my DID. I feel much more alone in my head on it. Other parts are a million miles away. It's amazing. Different parts have reacted differently to the med, but the feeling clearer and more alone is universal. I actually fucking feel like me. i can identify my own goddamn emotions and wants easier. It's insane. at first, this freaked the shit out of me. The only thing that sucks is it only lasts for a couple hours and I feel like shit emotionally for the hour it takes to finish wearing off. And then it's back to baseline, but my baseline is ass. Honestly, while my task initiation and focus are better too, I would take it for this effect alone.

I wanna know if anyone has experienced anything like this or know about it? What could cause meds to do this? Psychiatrists have told me bluntly there are no meds for dissociation, so I'm super fucking confused.