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In 1994, when MPD was erased and DID came in its place, the ”inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness” criteria was added to the DSM-4. Later in 2013, this was changed to ”recurrent gaps in the recall of everyday events, important personal information and/or traumatic events that are inconsistent with ordinary forgetting.”
Before I start my list of reasons, I have two disclaimers. The first one is that I have (diagnosed) DID, we also self identify as Plural, I am not a doctor. I’m a community organizer, peer support worker, and the founder and CEO of a nonprofit for people with DID/OSDD and all other forms of Plurality. I have personally answered over 5000 questions by different Plurals and read lived experienced comments by at least twice as many Plurals as I answered. I support over 3000 Plurals daily together with our team.
My second disclaimer is that this article is about the diagnostic criteria; I’m in no way claiming that people with DID do not experience amnesia or out-of-the-ordinary forgetting. Maybe this makes you wonder why I am making this list. Many signs and symptoms are mentioned in the DSM in the text part about our disorder. The diagnostic criteria are what is needed, with proof, to diagnose. This is one of the reasons that early childhood trauma is not a diagnostic feature but mentioned as associated with DID, not in the criteria, but in the text explanation.
In my humble opinion, we could avoid a lot of problems if they take out amnesia from the diagnostic criteria for DID and mention it like the association with trauma, in the text explanation of DID. Why? Well, I made you a list!
Edit: To clarify some questions brought up by the community on social media in response to this article, we have written an additional section for this article in hopes of clarifying ourselves: We are not implying that OSDD shouldn’t be it’s own diagnosis, it should. Nor are we saying that amnesia isn’t a common symptom of DID, it is. We also do not think that amnesia should be a separate comorbid diagnosis only some Systems get. Nor are we saying DID is an ”alter-only disorder” and doesn’t have other symptoms, it does and not all of them are listed in the diagnostic criteria, like trauma and it’s symptoms.
We explained in this article that by moving the symptom of amnesia from the diagnostic DID criteria, to the explanation text of DID, we believe problems can be avoided and considerations can be made to the person’s lived experience, time of ability to access assessment, differences between Headmates, and individual presentation of symptoms, at the time of access to assessment, among other reasons.
This article was written before the ICD11 was released, but we appreciate their new Partial DID diagnosis and how they have added a much more clear description of amnesia for DID, especially under ”Additional Clinical Features”
it says: ”Alternation between distinct personality states is not always associated with amnesia. That is, one personality state may have awareness and recollection of the activities of another personality state during a particular episode. However, substantial episodes of amnesia are typically present at some point during the course of the disorder.”
By using the term “typically,” The ICD11 acknowledges that amnesia is a common feature but not an absolute requirement for the diagnosis, especially at the time of assessment. Thus, it allows for more flexibility and individual variation in the presentation of symptoms. This is important because research shows us that for most, it takes 6 to 12 years whilst already in the mental health system before a correct diagnosis for DID is given.
1. Not all disordered Plurals experience amnesia. By that, I’m not only talking about OSDD Systems. DID is the only diagnosis where you can heal and, because of that, get a different diagnosis; OSDD, because you need to meet ALL 3 DID criteria. If you don’t have amnesia anymore, you don’t have DID anymore on paper. But your Plurality might still be disordered. I’m not sure how many people were diagnosed with DID and actually got re-diagnosed to OSDD because they healed and no longer experienced amnesia, but I’m sure it happened. A whole clinic in the Netherlands got re-diagnosed, and many of us had our diagnosis changed from DID to OSDD.
2. Huntjes (you know the psychologist who helped stop the publication of the Dutch DID guidelines together with the Dutch police task force. Gosh, how I wish this were a conspiracy theory..). Anyway, her peer-reviewed research has an awful small sample group of (white?) women who have been in therapy for 6-9+ years. The conclusion she makes in this paper is, in my humble opinion, appalling, and the comment section on the site agreed with me on that, but this article is not about that.
However, I’m pointing it out just to let you know there is already peer-reviewed research that shows amnesia disappears after therapy (my conclusion of her research, not her conclusion, sadly..). Hence, one doesn’t meet the current diagnostic criteria for DID anymore but does meet the criteria for OSDD. Again, no other disorder has this gradation, to call it that.
3. It can lead to the exaggeration of signs and symptoms in order to get heard, believed, or validated. And with Putnam his research stating for most in the mental health system, it takes 6 to 12 years to get correctly diagnosed with DID, it’s really not that weird that this is happening. It is unethical and shameful to blame Systems or Headmates for this behavior; instead of taking responsibility for the (mental health) system that has failed Plurals, disordered and not disordered, so grossly over the years; erasing non-disordered Systems, denying us personhood or to have a voice at the table, allowing abusers to still publish and giving them a podium to speak about abuse survivors, putting a chairman on the DSM team who doesn’t believe in DID and openly comes out with those opinions, ignoring research that shows with MRI a 73% accuracy in diagnosing DID. I can continue, but this list isn’t about that.
4. Amnesia varies per System; that is why in 1 diagnostic criterion, three different examples need to be given (everyday events, important personal information, and/or traumatic events).
Amnesia varies per Headmate. With or without EP/ANP theories, I don’t know any System that has consistent, unvarying amnesia between all Headmates, especially when we take time into consideration.
5. Our protectors would like you to know that amnesia is a very, very good protection mechanism and that the currenty criteria enable them to keep hiding the truth from me because the DSM criteria say so. It’s currently the job description. (Sarcasm, I hope.)
6. Our persecutors would like you to know that it enables them to self-harm and give us amnesia because the criteria say it’s okay to give each other amnesia. (Sarcasm, I hope.)
7. It depends on your doctor’s age if you get diagnosed with DID or not. This is kinda a joke, but kinda not because ”inconsistent with ordinary forgetting” is not only different per person but usually also different for someone who is 25 than for someone who is 65.
8. False memory foundation got disbanded, albeit people are still using their papers… Anyway, I just feel that so much of that drama, trauma, and scandal could have been avoided if amnesia hadn’t become a diagnostic criterion but instead mentioned in the text. I also feel it says a lot that amnesia wasn’t taken out of the criteria in 2013 because they added self-reporting at the same time.
9. Dissociative amnesia is a whole disorder on its own already.
10. Too often, diagnosis is a snapshot of the current moment under clinical observation. Sure some testing might be done, but only 1 Headmate is given the test. If they do the same test with another Headmate, they might get a different result. Maybe not in the overall score, but in the experience of amnesia specifically because it varies per Headmate and per moment in time. If different Headmates take the same test together, it’s just a mix of contradicting answers, and well, you can draw your own conclusions of what happens when that happens.
As always, we encourage you and your System to follow your own truth, to soul search, to find words, labels, visions, theories and communities that aren’t only within your values but also match your lived experience and/or long term goals, so that you might find belonging and don’t have to try to fit in.
Thank you for investing the time to read this article. Please, feel free to leave comments or feedback in the comment section.
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Disclaimer: Thank you for reading our peer article; we hope it was empowering, informative and helpful for you and your System. There are as many Plural experiences, as there are Plurals. So not all information on this website might apply to your situation or be helpful to you; please, use caution. We’re not doctors or clinicians and our nonprofit, our work, and this website in no way provide medical advice, nor does it replace therapy or medication in other ways.
About the authors
The Stronghold System are the proud volunteer founders & CEO of The Plural Association Nonprofit. They are from the Netherlands and reside in a 30-something-year-old body, are nonbinary, parents of an amazing child & 3 cats. They got diagnosed with Dissociative Identity Disorder over 10 years ago & also self ID as Plural.
We much prefer how the ICD-11 differentiates, based os whether you fully switch or not basically. Amnesia isn’t a criteria for either DID or partial DID, just “typical” so expected but not required. Other non-plural dissociative disorders have their own disorders separately too.
OSDD is a literal dumping ground now, asd we hate that plural and non-plural dissociative disorders get lumped together. When the DSM was updated to 5, some of DDNOS-1 was moved into DID; we think it should’ve all moved into DID really, separating plural and non-plural dissociative disorders
But we know the DSM is written by people who don’t believe plurality is real, so fat chance of that and these steps backwards make more sense under that context too
You are really forgetting the whole pain of having DID and switching, then not knowing what happened when you ( your body ) was being controlled by another one. This pain of ‘amnesia’ the out of controlness, the missing time and so on, is a huge part of my distress and is the fact I don’t know my own story and the trauma that messed me up in first place.
May be the difference between me with DID ( diagnosed only 5 years ago) and you is that I am me and they are them inside and I don’t feel plural but I am! Yes confusing and upsetting and having trouble identifying who I/me is /are. I am very disordered and am struggling in therapy to understand. I have one body and have to share it with several other identities who are like flat mates that I never see. So I am struggling with understanding you and your way of thinking