Are you interested in clearing up misconceptions, stigmas, and myths about Dissociative Identity Disorder?
Have you ever had negative experiences with mental health providers who did not understand DID?
I have an opportunity to share with you today. You can put a voice to those negative experiences you have had!
One of our own DID survivor-readers here at Discussing Dissociation, “Healing,” is working on a project that will benefit dissociative trauma survivors. Healing is making an effort at correcting the misconceptions about DID, and your help with this project would be appreciated.
Healing has written an interesting set of questions for you, and she will present the results of this study at a state conference for the American Counseling Association in a few weeks from now.
[Update. This presentation has been made, and the results were well received. A new blog article describing this will be forthcoming.]
I’ll let Healing explain the rest, but please know….. you have only 10 days available to comment with your answers.
Hi, this is Healing here.
I am a graduate student working towards my Master’s degree in clinical mental health counseling. I will be graduating in April. Post-graduation, my hope is to specialize in the DID population because there is a huge needed in my area.
One of the requirements for graduation, is I have to present a poster at my state American Counseling Association (ACA) conference which will be held in November.
The poster I am presenting is a literature review poster, which means I already have about 20 articles I have to review. The purposes of the responses would help me identify which stigmas, misconceptions, and myths are a common theme among the DID community as a whole so that I will be able to bring awareness to the mental health professionals and mental health professors (including my professor who doesn’t believe in DID) at the ACA conference. With the responses, I will be able to pull from the articles I have to expose the truths that research has been done that support DID that those of us with DID are not what any of these false beliefs are. I am using several articles from researchers who are DID-positive and have already done great research.
My poster proposal is as follows:
Dissociative Identity Disorder (DID) is one of the most controversial mental health disorders. Individuals diagnosed with DID often are negatively impacted with damaging stigma, myths, and misconceptions due to inaccuracies and misinformation among mental health providers. This poster will examine accurate relevant information about DID.
I am requesting from those in the forum to contribute any misconceptions, stigmas, or myths which they have experienced from mental health providers. I am only one individual with DID but in no way does this mean I am the only one who has had negative experiences with mental health providers.
I will not be identifying anyone who contributes.
I will be able to use your contributions to provide relevant information of how negative misconceptions are impacting those of us with DID. I will also present relevant research (from about 20 articles) that proves that those misconceptions are not true. I will be presenting my poster to mental health providers at the upcoming ACA conference.
My goal is to educate the mental health community because even in 2018, there is still not enough accurate information being taught within our universities.
This will be a great opportunity to bring awareness at a large state conference.
1) Have you ever had a negative experience from the mental health community because you have DID?
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I won’t be using any identifying information because I know how vital it is for those of us with DID to keep our autonomy and anonymity
There is no requirement of a set number of specific responses.
The purposes of the responses would help me identify which stigmas, misconceptions, and myths are a common theme among the DID community as a whole so that I will be able to bring awareness to the mental health professionals and mental health professors (including my professor who doesn’t believe in DID) at the ACA conference.
With the responses, I will be able to pull from 20 articles I have, to expose the truths from research that supports DID. Also, I can show that those of us with DID are not what any of these false beliefs are.
Thanks!
Healing
That’s an important presentation, I think!
Imagine that! Isn’t it exciting to think that an entire ACA State Conference will be hearing CORRECT information about Dissociative Identity Disorder. What an excellent goal, and thank you, Healing, for inviting those of us here at Discussing Dissociation to be part of your stand.
To You, the Reader here at Discussing Dissociation —
- What do you think?
- Might you have something to contribute ?
- Have you got experiences or information you can share?
- Have you ever experienced a negative misconception about DID with a mental health professional?
- Are you interested in accurate information being presented to mental health providers?
-
Please post the link to this article wherever you group with other dissociative survivors. Thank you!
Your thoughts and comments are welcome.
It’s good to be able to have an input in positive change!
You have 7 days available to comment with your answer.
As always, I wish you the best in your healing journey.
Warmly,
Kathy
Copyright © 2008-2020 Kathy Broady MSW and Discussing Dissociation
1) Have you ever had a negative experience from the mental health community because you have DID? too many to count over the years, from too many peoplle
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)? from psychiatrist,several therapists, a mental health facility, psychologist,and a hospital.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
very much so. and they just didnt want to deal with it.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
Often told I was lying, by professionals, even at the DID hospital, just because different inside people gave different info about the same event(s)
I was told often that we were not real, even though i am an alter and I am quite sure I am real
often dismissed by professionals
when I admitted to having DID, being told “ we dont play that game here.”
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
believe what we tell you. we know ourselves better than you do. if we tell you things are a certain way inside, then believe it and dont dismiss it. if we tell you we are in trouble, dont just tell us to help each other since youre too busy. if we could help each other with this, we would have already. Accept DID as a reality. We are not making it because we are bored/ have a good imagination / need attention/ like to play mind games, etc.
1. Several unfortunately. All around the idea of being incompetent to make decisions because of DID diagnosis or some degree incompetence because we “believed” we had that diagnosis. Also just tota! ignorance of what DID is.
2. Went to a large facility believing we’d more readily find an experienced therapist. After a torturous interview in which for the first time honestly talked about known issues, was referred to a lady “wel! versed”, “years of experience”. We had only been diagnosed a year earlier. So we were not very experienced. Turns out she thought she’d get a few DID patients and learn about them. When she determined we were “difficult”, she called the police, had us all admitted to the same hospital, then “fired” us. Only good thing was that we DID s met others for the first time! We were assigned an attorney who was DID. Sure the powers that be did not know this. She handled our case and provided priceless information.
3. Probably all three but mostly ignorance.
4. Had a psychiatrist say that we were “obviously” not DID because we are well educated, successful in more than one field, etc. We just needed a few drugs because the field we were working in at the time was a stressful one. Actually we believed him. Words of a respected professional..right? Went years believing this…minus him and his prescription drugs and any therapeutic support.
5. We may not totally understand what’s going on inside..that’s why we come to you…but we don’t lie, invent stories. If you don’t understand what we are trying to explain, listen and help us make sense of it for you. One of the most stunning realizations brought to light by my current therapist was… He doesn’t know what it’s like to be a multiple *and* we can’t truly understand what it’s like to be a single personality. Totally different viewpoints, experience. It takes effort, open communication to understand each other. So ask us, ponder, discuss and let us do the same. We want a peaceful, happy, successful life. Same goal for all people including the therapist. Don’t predetermined what that is for us. Help us decide and achieve it. Don’t think re-traumatizing us or loading us with drugs is helpful. It may let you feel that we are “working” or “feeling” better. But that’s not the goal.
Ann,
Thank you for your input. I really appreciate what you have to say. I think as I have read yours and others in this forum it helps to know that we are not alone, and yes this will be worth it.
Healing
1) Have you ever had a negative experience from the mental health community because you have DID?
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
Please accept my apology for straying from the numbered format; it feels more natural to me to respond to questions 1-4 with a single answer. i do hope this doesn’t bugger up the data collection process.
A note on pronouns: “i” refers to my/our collective and fluid operating system, which assembles as needed to act as spokesperson. In my/our system “i” does not refer to any specific internal individual, rather, each alter uses “I” when considering him/herself separately.
As i was given the DID diagnosis less than four years ago, there have not been many opportunities for misunderstandings of this nature. But i do find myself dreading any situation in which i might have to describe my peculiarly complicated inner architecture. Earlier this year, having landed in a small hospital on a suicide watch i found myself having to explain the DID notation in my chart. This went pretty well, considering my condition. Even along the road to healing, crises happen; these are increasingly rare and far more rapidly resolved than at any point in my past. In any case, during that short stay, i was not made to feel that either assigned caseworker or any of the other ER folks thought me particularly daft. As i sat speaking from my hospital bed about inner alters/modes/beings/travelers and how transitions between them feel on the inside and manifest on the outside, i had the sensation -now familiar from therapy- of listening to an out of touch person speaking and thinking wearily “Who is that? Oh yeah, that is (one of) me”. So it has gone and continues to go in my journey: the more i struggle to make myself understood, the more of a nut-job i sound in my own ears and yet i am speaking my plain truth. If not for the fact that my own (freaking amazing) therapist was advocating for me via phone (while on vacation!), i shudder to contemplate what the outcome might have been. My therapist’s knowledge/trust of my ‘system’ coupled with her fierce protectiveness made it possible for me to effectively develop with hospital caseworkers the safety plan required for discharge. i dislike thinking of how badly it all could have gone without groundwork being laid via these inter-professional communications; i probably would have despaired of talking completely. As it was, they must have decided i was not a complete self-destructive kook-burger, because i was eventually released on my own recognizance.
Knowing that there is said to be a sizable contingent in the mental health profession which does not ‘believe’ DID to be a bona fide disorder, i have chosen not to open the discussion at all with non-mental health folks and to play it very low-key with persons in the mental health field with whom i must do non-DID-related business (i.e., marital counselors, support group facilitators). While i am relieved and immensely grateful to have finally gotten a diagnosis that helps me begin to make sense of my lifelong confusion, when it comes to the prospect of being understood there is a uniquely problematic aspect to this condition that feels like repeatedly trying to convey abstract and highly nuanced concepts/experiences in a foreign language with the result of being misunderstood more often than not. Part of the problem is, i am making the map-of-me/we as i go along, and so very much that i encounter “in here” is unfamiliar. i constantly struggle to find the right words, but the common lexicon for these feelings/experiences is woefully inadequate and with all due respect, many of the technical terms emerging from the profession have all the compassion and comfort of stainless steel. The writings of even well-intended m.h. professionals can seem to me/us to be attempting to describe a culture they do not fully understand while privately battling their own morbid fascination/revulsion, rather like they might be writing about ebola (“… a horrifyingly cool disease that I hope like HELL I never catch”). In my opinion, for the ‘language’ of dissociative experience to be organic it must be, above all, kind. It must sound like poetry or music to the ear; it must invite rather than dissect. To make sense to those of us who live with dissociative systems, the patois must needs arise from us and not be imposed upon us.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
If i could give the profession as a whole one big shoutout, it would be to get out of your analytical heads – this condition cannot be understood without incorporating heart, soul, body. Stop debating how many angels can dance on the head of a pin – or how many MEs can be encompassed within one I. Think like anthropologists, not clinicians. Be respectful of a culture that arises from its own indigenous soil; remember that such systems may be foreign to you but they make perfect sense to the natives. To those mental health and other professionals who feel the need to debunk dissociative disorders i would extend this two-part challenge: First, be on the alert for your individual reaction to the very notion of multiplicity. If you are finding that you have an urgent need to make this idea go away, ask yourself why you protesteth so much. Is it intellectually unworkable, or is it maybe a wee bit upsetting to you? Are you afraid it might be catching, or that you might already have a touch of it? With a growing body of literature ranging from the casual to the academic, with first-hand works (such as Akwaeke Emezi’s Freshwater) beginning to emerge, isn’t it getting harder to ignore the possibility that this might be real? Kid gloves aside, when it comes to things you have not personally experienced, sit down, shut up and just listen.
And here is the second part of my challenge, this from someone who as a trained scientist had to run a forbidding internal gauntlet of skepticism in order to accept my diagnosis: Is not the value of an idea in its power to heal? Not every emergent hypothesis (or entire new branch of knowledge) lends itself to the empirical reductionism of experimentation but instead accumulates new methods and models as it is patiently held and examined free from preconception or prejudice. i am one who thinks that the historic tendency for psychology to be monotheistic in its orientation has encountered a fatal obstacle in the dissociative disorders. This has the potential to upset the whole apple-cart, the idea that some humans as individual carbon-forms might have a plurality of distinct essences carried and experienced within. Some people might have single-occupancy vehicles and others carry a spare in the sidecar, while a few might drive mini-vans. Confronted with this, the field which professes to describe the human mind can either retrofit itself to align with what IS, also known as evolving, or it can rouse the naysayer chorus and shout down the voices of we-the-dissociative, labeling us all delusional and hoping we will go away or at least stop with the crazy-talk.
We are not taxidermy’d specimens for y’all to study and poke at, but dynamic beings who have much to teach about ourselves (about selves in general) if we could only be believed. To not be believed is exquisitely and devastatingly painful. The science of psychology, that is, the brain-that-studies-itself, should always bear in mind its own prejudices and limitations as it goes about the business of collecting and describing. Foremost among guiding principles the Hippocratic guideline to do no harm must remain always in view. This and all healing fields must have sufficient humility to accept challenging new ideas, sufficient honesty to seek new knowledge with minds that are rigorously held open, and above all, sufficient compassion to assess the merits of a new idea on the basis of one criterion: does it heal? Speaking only as one among the sea of client faces, my life has been completely altered (pun intended) in the handful of years following my diagnosis; for the first time in more than fifty years of existence things have begun to make sense in ways that they never did in my three prior decades of therapy. This whatever-you-wish-to-call-it, concept/diagnosis/model of dissociative dysFUNCTION has proven itself in my life in a thousand profound ways since it was first presented. Finally, finally, i am healing.
It works, therefore it is an actuality.
Verum sanitas
LiV
LiV,
Thank you for your input! I greatly appreciate your insight. I for one don’t think you are a “nut-job” as you described it but instead are on a journey of discovery. It is definitely one of twists and turns, ups and downs but one I find is never dull or boring.
One thing is certain, as you gain the proper treatment, you will heal.
Healing
Thank you, Healing .. and thank you for having the guts to push through the resistance of intellectual sloth. Best of success to you as you prepare and present your research — the tenor and timbre as well as the sheer number of responses on this page makes the need for your research abundantly clear. Keep up the righteous work!
LiV
Thank you for taking the time to write. Your words have struck several chords with myself.
I am on the path of healing. A wobbly start. I forget where I am and stray from the path often. Inspired by your words I continue. Momentarily with the knowledge of not being quite as mad as I am made to feel at times. x
Keep on keepin’ on, Rachael – every new bend in the path has the possibility of revealing amazing new vistas. Many thanks for your kind words.
Love what you wrote. Liv!!! Lari
I mistyped – I meant to say, Liv!!!
Lari~
It means a great deal to me that there are others who understand; makes the world a less lonesome place. Thank you.
Thank you, Liv! It is so frustrating when I sense a “shift” and we start talking from a perspective that is REALLY important to us and the Outsider just looks at us blank…..What is coming out of “my” mouth is SO clear – we can’t understand why it is NOT clear to them……it isn’t “pluto” territory – how can they just brush off what we are saying – making us feel “stupid” or like something is really “wrong” with us……We loved your idea of them checking out why they are so determined to discredit us…maybe they ARE a bit more like us than they realize and just don’t want to “admit” it – so they fight it and make us feel stupid….frustrating……
MissyMing
07/10/19
Hello Missy~
So appreciative of your words, thank you.
Pilgrim,
Thank you for contributing. I really appreciate your input and what you are sharing is valuable information. I hope as you read other’s responses, you know that you are not alone in your journey.
Thank you for helping me.
Healing
I have serval. D.I.d does not exist. Mental health service.
Jokes been made about it by lecturers of my mental health class which I put a stop to.
Counsellor unwilling to take d.I.d clients
Mental health service not been able to diagnose so I was told I was faking. it.
This problems are because of misinformation in nz. Lack of training and the negative impact of popular media.
My most recent problem with was with mental health. Funding for trauma related issue comes from a different organization in new Zealand, acc. I was diagnosed by one of their assessors a long time ago. Unfortunately all mental health service are provided by the hospital system. I had a bad patch last year I just couldn’t deal with things any longer. I approach the cat team ( emergency mental health) and was told I had to wait 2 weeks before I could see someone when I was suicidal. On the day of appointment I was turn away. I tried everything I could think of including calling emergency serives only to be told if I did not leave they would call police and have me treasspast. This is the only place to get help. I went home and over dosed. Taken a&e released no assessment done. 2 more suicide attempt I finally embrassed a mental health nurse at a public meeting, I was desperate. This time I was assessed and refured to community mental health. After what they called an exsentive assessment where not one trauma related question was asked and I was just given question sheets to fill out, no one actually spoke to me it was decided there was nothing wrong with me and never had been. Even though I have been hospital twice. They did not consider suicide or self harm mental health issue. After lodging a complaint my file was surpose to be review by head phycologist he too decided there was nothing wrong. I did not give up
I went back to acc as they had originally diagnosed me and ask them to do an assessment. This was done by the same person who was surpose to do the review for the hospital
He did a proper assessment and diagnosed d.I.d. it took a year for this to happen. In that time there was repeated self harm and suicide attempt. A & e kept trying to have me section, forced stay in hospital) but because mental health kept saying nothing is wrong they couldn’t. A year on and I am still not getting any help which is government funded in new Zealand. My case is currently before the health and disability commissioner. It will be another year before I get help. I am unable to pay for private care
Deborah
Vicky Smith is Wellington based and is an acc psychiatrist who knows about DID. All our parts are important give them space, work together and keep them safe. Get to know and appreciate all the complexities of your parts. Ask them what they need. They are usually formed as protection to horror. They got you through that time now help them to find peace in this time.
I agree a lot of therapist don’t know or understand DID or a fearful of clients who do present with “others”. I worked in a Rape and Abuse Center and none of the other therapist knew anything about it even though they said they did. I no longer work there. +
I know I’m late … but …
I haven’t ever had a negative experience because of my diagnosis. My negative experiences were well before, decades, there was a diagnosis.
The only comment I have to add is to the last question.
If there was ONE thing I wanted mental health professionals and the public alike to know, it’s that a dissociative “disorder” (implying that somehow, we’re not normal, but that’s another discussion), is a CONDITION, not an illness. Much like pregnancy is a condition, not an illness. Sure, it can make you feel bad for a while, sometimes a long while, but no one who is pregnant is automatically considered to have an illness because of the pregnancy itself.
We are not “ill” simply because our brains took the extreme fork on a road with many forks that look very similar, but don’t involve losing time. EVERYONE has different parts and I can prove it. Those with dissociative disorders just don’t remember some stuff because that “angel on my shoulder”, or whatever is most recognizable for others, figured out in childhood that they could take over and protect me without me remembering a thing. No one knows why everyone doesn’t experience this, but a lot of folks experience something similar and that is most evidenced by “selective memory”, ie., not remembering having a conversation that was uncomfortable, or ignoring what we simply don’t want to admit is correct, forgetting whatever it is that doesn’t fit nicely within the ideal we have of ourselves, our lives, our experiences, or otherwise. That’s not a dissociative disorder, but the brain of that individual simply trying to make the world look the way we want it to.
Also, a dissociative disorder does not always include sexual or physical abuse. For goodness sake, while I understand that physical and sexual abuse appears to be the most prevalent cause for developing a dissociative disorder, there are quieter, more insidious causes, like growing up with a Narcissist.
I was not abused. I had everything I needed and had a perfectly normal childhood. That was, until I realized exactly what my clinically Narcissistic parent *actually* did my whole life. Then, it all made sense.
We are not “ill”. We are not damaged. We have a condition that frankly, makes us more than most people can imagine. We don’t need “fixing”. What we need to “fix”, if anything, is our perception of ourselves and embrace that our brain did something extraordinary when we were very, very young.
Dear April D,
Thank you so much for sharing this post with us (such wisdom is never too late by the way). I just want to say how much I appreciated your statement: “If there was ONE thing I wanted mental health professionals and the public alike to know, it’s that a dissociative “disorder” (implying that somehow, we’re not normal, but that’s another discussion), is a CONDITION, not an illness.”
I have so struggled with the terminology of “mental illness”. I did not like the idea of illness being attached to mental health issues. Yet I felt that I needed to say that I had a mental health illness to try and take the stigma out of issues related to mental health – to stand up and be counted as mentally ill. Now I have the proper terminology to use – I have a mental health condition! That is so much more positive, affirming and accurate to what I feel.
Oh, and I also hope that others read your posting for the point that you make about DID not always caused by physical and/or sexual abuse. I think that this is a very important point for us to keep emphasizing here. I worry about the folks who are not being properly identified as DID (either by professionals or themselves) because they do not have physical/sexual abuse history. It is important that we keep this dialogue going and to be inclusive in our embrace of the different paths that got us to this place.
With sincere gratitude.
ME+WE
11/16/18
April D
I thinking if this is the way you look at it and it helps you deal with then great . I will be sticking with illnesses. To me that gives me hope that I will improve
I don’t think I wrote this post, but it is exactly my thoughts mostly.
That it NOT a disorder.
That narcissist etc can cause it. So ya, lots others can be higher on the dissociative spectrum even w/o obvious abuse.
And ya all’s diss to varying degrees. Just some more diss is all.
But proly best not to shove littles away.
Just saying.
Ok
Typo in the title.
Thanks, A. I didn’t catch that.
Glad you did! 🙂
Cheers,
K.
Hi, I was in hospital and the psychiatrist I was assigned refused to believe in DID and work with my parts. I was not yet sure what was going on but I knew I had parts inside me, I could hear them, I saw their writings and drawings. I was not afraid of them and I wanted them to be able to come out and talk to her. She said to me, I was not to let them come out. I asked why and she said, otherwise I would end up like “Sybill” (the movie). I said “I think it’s a bit late for that and if you truly base your diagnosis on a movie then you really don’t know what you are talking about”. I had worked for many years with people with DID as I was a sexual assault worker, so the thought of having DID didn’t scare me. The thought of how I developed DID was terrifying. Anyway I got a new psychiatrist and have been working with him now for 6 years.
lexi,
Thank you for sharing. I’m glad you found a new psychiatrist that is better suited to work with all of you. It’s really sad when professionals base “ideas” off of media. I completely understand.
Healing.
I was accused of a serious sexual assault by a lady with DID seeking re-victimization and her child alter revealing. Due to the ignorance of DID among social services my life has been destroyed and my accuser has been abused and tortured since 2015 but police wont listen because social services director stating she is safe and has a carer, I was contacted 5 times by child alter but each time i told police they consulted with so called professionals so abuse continues .
1) yes…
2) regular hospitals, PCP, specialty DR.s…. now I just say I’m bipolar……and in an ER I said I also had complex PTSD …. shut the front door… they didn’t know what that was so my partner said she was involved in911….and then they got it…. also some mental health establishments… now I only go to very specific mental health trauma unit hospitals….and there are a handful in the US
3) not sure… in some settings they just didn’t seem to understand what it was…. in mental health settings I believe they might believe “we are to complex/crazy high maintenance???”
4)well I told you about the ER crap…. that was in G.A. AND another one and I sure an going to mention the establishment bc I worked there…. Johns Hopkins … (Baltimore, MD) yep said they don’t believe in DID and I had gotten diagnosed at Sheppard Pratt again one of the leading mental health hospitals in the national also in Baltimore, MD ….. honestly I don’t know if the head of the psychological dep. has changed since this was about 10 yrs ago but … yep the worst…. and then I had to do a symposium for the residents (bc it’s a teaching hospital) just to prove how “false memorie” crap can really mess a person up!!!!
5) I believe all medical professionals should have some sort of “working” knowledge of DID and how and why it comes about…. I think it should be taught in medical school… just like Bipolar….
Another stigma that the movie industry has put out there is that we are all pedophiles and a danger to society.
I felt very betrayed by the Psychological community when Bethany Brand, a famous DID researcher and advocate, worked with M. Night Shyamalan during the production of the movie Split. That movie portrayed DID in the worst possible light and continues to perpetuate many of the very worst stigmas, misconceptions, and myths associated with DID. Her collaboration on the project was a betrayal to the community she claims to serve. Period. And I lost trust and confidence in the Psychological profession as a result.
I am fortunate to have a great Psychologist who is knowledgeable about DID and has worked with many DID clients. I do trust her, and she has worked hard to earn it. However, I have never mentioned my diagnosis to family, friends, or other medical or mental health professionals because of the stigma attached. I had a horrific experience being ‘counseled’ within the Christian religious community, where they all too willingly embraced the common stigmas, myths, and misconceptions about DID, which resulted in major violations in confidentiality and a lot of harm to me. I ended up being ostracized and driven out of a church I attended for 20 years. Lost many friends and my main support system. It was horrible.
I will never again be open with anyone, regardless of their degree or position or job title, about my diagnosis. I knowingly and willingly lie on every medical history questionnaire about my mental health history.
Honestly, at this point, I believe it is nobody’s business but my own.
Neo,
I read an article that was written shortly after Split came out, and it mentioned Bethany Brand collaborating with Mr. Shyamalan, but it basically said that he had lied to her and told her that it was going to be a positive, realistic depiction of DID. Then, once he got the information out of her that he wanted, he didn’t let her be a part of the actual making of the movie. Once the movie came out, she was (rightly so) very angry, and tried to contact Mr. Shyamalan about it, but got no response from him or any of his people. I’m not saying this to defend Mr. Shyamalan (I think he’s despicable), but I just wanted to relate what I read in an article. It sounds like Bethany Brand was duped, but I’m not really defending her either, because I think she should have been more careful and insisted on being more involved in every step of the production. But it didn’t sound like she knowingly tried to betray the DID community.
I definitely get what you are saying about a lot of mental health and physical health professionals not having a clue about DID. We have experienced that as well, and we have also experienced some Christians who are unwilling to accept the truth about DID. But we are Christians ourselves, and we do have some Christian friends who are accepting of our DID and willing to learn about it, so it’s not impossible to find Christians who will accept it. But we do agree that you have to be VERY careful about who you tell about your DID. (That’s why we use pseudonyms when we talk about it online). Unfortunately, there are far too many people out there who refuse to let go of their stigmatized notions about DID. Hopefully that will change some day, but it will take a LOT of hard work to change.
I wish you and yours the best, and thank you for sharing your story.
Leyna
Thank you for this reply.
I guess I think Bethany Brand was, and I’m going to be blunt, just incredibly stupid. Especially as someone who has dedicated her professional life to working with the DID community and knows the stigma and challenges we face. She knows our issues all to well to agree to work with a famous horror movie writer and producer. Duh. What did she think was going to happen?!?
Honestly.
While her intentions were probably good, she showed incredibly poor judgment and a total lack of wisdom and understanding. She seems like a bright individual. I think the opportunity to work with someone famous made her step away from or forget her core values and ultimately betray the community she serves. And for a community whose condition is caused by breaks in trust and major betrayals, she proved that she does not exercise good wisdom or judgment and that she is not trustworthy. I had the opportunity to be part of her study and I refused. I simply don’t trust how she will use the information she obtains.
I agree changing stigma is difficult work and will take a long time. It saddens me, but it is reality. And for that reason, I prefer to keep my DID hidden.
Hello Healing,
(wonderful name btw – so much hope in it)
I wanted to respond to your request even though I cannot say that I have had any horrible experiences with the medical/psychological professions (as I know that many folks here have) directly because of my DID. I wish to qualify that a bit because I feel that there is an important lacking of acceptance and understanding of DID that does cause great harm. So, answers to your questions:
1) Yes. Not intentional but many caused by ignorance of DID, trauma and dissociation.
2) Individual therapy, group therapy, educational institution (i.e., psychology program) and teachers in a psychotherapy-training program.
3) I believe that it resulted from an overriding bias towards a specific therapeutic modality that was not receptive to, or cognizant of, the potential wide range of symptoms a client may present. There tended to be a “one size fits all”, or perhaps better stated as a “one modality fits all”, methodology that was not a realistic or healing approach to mental health care, in general, and the complexities of DID, in particular.
4) I must preface this example with stating that I was not diagnosed with DID at this time (despite seven years in individual therapy and five years in group therapy at this point). The stigma, misconception and myth that would have been a prevailing factor in this case (and the lack of a diagnosis) was that DID is a rare condition, if indeed it exists at all, and that dissociation is just a selfish, fabricated, acting out on the part of the client. The one example occurred in a psychotherapy-training program where a small, group therapy session was conducted. I had some issues that I wished to work on and said so right up front but was passed over twice for other group members. This triggered one of my alters (as I now understand it) and a whole shut down (tonic immobility) on my part. We were all sitting on the floor so I just slumped over on to my side and “went away”. By the time that it was “my turn”, I was down “the rabbit hole” and I could not get out. The switch and dissociation was intense and confusing for me. I did manage to whisper over and over that I needed help but the teacher/therapist just went into a rant. She verbally berated me calling me “selfish”, “manipulative”, “a waste of time”, etc. It was one of the fellow participants who kept saying “she says that she needs help” that was finally able to help me ground and come back. That just enraged the teacher/therapist even more who just continued on a rant that seemed to go on forever (well, enough so that we ran out of time in that session). I was terrified and in shock and spent the day in a dissociative daze.
5) I would like to tell the mental health community that DID is –
• very real
• very painful
• very sadly a reflection of intense neglect, abuse and trauma in childhood
• very understandably a condition that has a kaleidoscope of presentations due to the uniqueness of the alters in each system
• very treatable
• very much requires mental health professionals who can “think out of their professional boxes” and trust their skills to understand, diagnose and treat in a variety of creative ways
• very challenging (for both client and mental health professional)
• very likely to be some of the hardest but most rewarding work that you will ever engage in with a client
Thank you for offering us the opportunity to contribute to your presentation Healing. You are charting wonderful, healing territory here. A special shout out for doing that! Please let us know how it went.
Best of luck.
ME+WE
10/20/18
We got told we were demon posessed by a couple people.
One a (ex) best friend, one a therapist.
The one said it after meeting Mae. They called Mae a demon. The child who is afraid of everything from bugs to her own shadow to talking to grown ups. Sure, thats demon material there 🙄
I want people to know we are not fucking demons.
And we are not serial killers.
Like Neo, we wont ever tell anyone else about who we are. We lie on medical paperwork also all the time.. Too many people (3 ) know already. Thats three too many.
I hear ya Pilgrim!
When i told my best friend she said something like “you mean, like when a ghost takes over your body and controls you?” and followed it up with “please don’t kill me in my sleep”… After that things calmed down and we would go out together shopping etc but once she had a baby and her mum found out about our dx, she obviously got in her head and scared her, cos my friend never let us near her baby again after that…This was a friend we’d known for like 25 yrs.
Stigma is real and its f*cking hurtful! I’m sorry you’ve had similar experiences.
We do the same as you. We are open about it on Tumblr and IG where we are anon and on our trusted friends list on FB but out in the real world nobody knows cept our husband and 1 friend who is studying to be a psychologist. But even then, we tested her extensively first to see if she was open minded and non judgmental and she totally is lol. We won’t ever be telling anyone outside of these 2 trusted people again either. Its not worth it.
Pilgrim,
I very much understand how that feels and what that experience is like. I think you are very brave and courageous for sharing.
Thank you!
Healing
wow what a triggering blog for us and full of fear to answer that we will be judged as bitter and not relevant.
yes – by just about everyone we have had in contact with a degree in medicine, social workers, psychologists, psychiatrists, etc. with in our pursuit to find out why we knew nothing. the only people who accepted us and didnt test us or shame us were naturopaths, that is until after 20 years we stumbled onto kathys blog and despite telling our social worker and psychologist (who said she was a did specialist cause she wrote her phd on it 25 yrs ago and read nothing more) no one looked or listen. they said they believed in mpd but really they kept trying to put us in a single model which we werent. they all said they believed but then called us liars, made fun of our changing voices, told us how our system worked and that we had one core (we actually have a shattered core, 8 to be precise), that our ages were wrong, so we had to fight them as much as ourselves to be taken for real, only to be lied to, quit on, locked up and threatened with taking our kids away and given to our extremely abusive father. we had psychiatrists that didnt know what mpd was, called a demon and needed to be exorcised and told our dsm test was off the charts but we didnt lie we felt too mich for one person but dont know what our problem was. we have been told no one could help us, that we had to teach them and take care of them, then they overloaded up with memory work untilwe were suicidal and out of control. the phone is a huge trigger for us, even now we dont call people no matter how bad it is but that was shoved down our throat to call but yet we never got called back. one example – it took 10 years before someone really understood ground hog day was a very bad day cause we kids only lnew that name not the ritual abuse ceremony
we are doing better with this blog most of the time although this one is triggering and giving us a headache and a flood. we arent ashamed to have mpd anymore and we even enjoy it somedays. instead of going through the motions waiting to die we now do things and have fun. we have people that dont
know we have mpd or complex ptsd but except us and listen when we talk. there still is no one where we live who knows md or treats it
mostly if we were to give advice it would be to read discussing dissassociation lots. dont expect us to teach you
believe
be honest cause we can pick up lies
accept us (really – dont just say it)
believe
listen for what is not said as much as what is said
dont put us in a box, be repared to fly by the seat of your pants
believe
dont add to the shame or belittle what we went through with quips like – dont know why you are alive – andassume that takes it away instantly. same with itsnot your fault.
but mostly believe and be open which have repeated on purpose
x,
I really appreciate you sharing. I know it is scary to answer questions like this. Your response and everyone in the forum is going to help make a difference. There are no judgments here. You were just being honest. Thank you for being strong and courageous.
Healing
Wow, great project, Healing. Thanks, Kathy, for facilitating.
I have felt well-cared for and understood by my individual Ts and Ross Institute (Denton). I live in a metropolis (3+ million), and there are so many wonderfully knowledgeable Ts.
My concern is with different trauma treatment models. Where I live, many therapists advance the AIR network model. I like Colin Ross’s model better for DID. My new trauma T said she’ll tailor her approach to my system—WOW! 10/21/18
T.Clark,
Thanks for your input and thanks for being a part of this. I’m glad to know you have a great T who is tailoring her approach to your system! That is awesome. That is really good to know about the AIR network model. I am not familiar with it but I will look into it. I am always looking for various models to use with clients I work with because the typical “norm” usually doesn’t help them.
Healing
Healing,
Congratulations on your educational endeavors! I absolutely want DID to be better recognized by health care professionals, in effort to prevent anyone from going through the long and painful ordeal I did when my system started to break down. I talk a bit about BPD, as I spent years trying to recover from this misdiagnosis. I wanted to explain the process of getting diagnosed. I hope my information helps you in your presentation.
1) Yes, many negative experiences.
2) Psychiatrists, psychiatric nurse practitioners, psychologists, MSWs, LCPCs, psychiatric nurses, support staff, acute mental health hospital, emergency room professionals, and psychiatric hospitals.
3) Yes! I was diagnosed (dx) with PTSD and drug/alcohol dependence at age 20, and at the time, managed symptoms well enough to obtain an AS degree, licensure, and successfully work in the mental health field for 11 years. In those years, I was never educated about DID let alone the impacts of trauma on mental health. In fact, I encountered only one person who had DID. I believed it existed, it was extremely rare, and from what I was told by more educated co-workers, recovery from DID was not achievable.
A side note: There was also a strong stigma with co-workers against BPD being very difficult to treat, and recovery from BPD is rare. I was ignorant regarding the impact of trauma and how common it is for trauma to be a precursor of maladaptive behaviors.
In 2014, I was taking an upper level undergraduate Abnormal Psychology class. While going through the DSM-5, the PhD educated professor told the class that DID was not a true disorder and should not be in the DSM, claiming the next update will no longer have it listed.
4) I was in my late twenties, a respected mental health professional in recovery from PTSD and addiction, when I began to demonstrate symptoms of depression and was hospitalized for SI. I was dx and treated for MDD, with psychotic features, GAD, and Bipolar, Type II.
My overall functioning continued to decline, and I resigned from my profession. Within months after I resigned, I experienced another significant trauma, and a year later, another trauma. Shortly after that, I started to SH (no previous history) and was hospitalized. I was dx with BPD and that began the onset of gross maltreatment by nearly every mental health professional I encountered.
My behavior was inconsistent, impulsive, dysregulated, and when I explained that I was having memory gaps/loss of time, professionals stated it was part of a “game” I was playing. I was considered unreliable, attention seeking and manipulative. My opinion or experience didn’t seem to matter. As much as I researched about BPD treatment and recovery, BPD didn’t include memory loss I experienced while having stark inconsistencies in behavior that only a person observing me could recount. Regardless of my best efforts to recover, I continued to decline. It seemed the more effort I put forth to control my behaviors, amnesia and self-destructive behaviors escalated.
I was told by professionals, I didn’t want to change and wanted to be miserable. I felt misunderstood, profoundly alone, invalidated, and hopeless. I had become untreatable, with no ability to recover. I was caught in a revolving door being hospitalized 8-10 times a year. I began to be outwardly violent in hospital settings, destroying property and assaulting peers that bullied others. I had never had these behaviors previously. As much as I wanted to, I could not stop my behaviors, and I believed I was destined for an institutionalized life. Fortunately, an outpatient LCPC administered several psychological tests and dx DID. It made complete sense, fit all my symptoms, and was a relief.
Despite my own professional experience, I was unaware of how widely unaccepted a DID diagnosis truly is. I thought having BPD dx was terrible. DID stigma/misconceptions/myths is at a much higher level of maltreatment including flat out disbelief by professionals.
I was told by masters or above level professionals:
• DID is not real
• I could stop maladaptive behaviors, but I wasn’t trying hard enough.
• It was unlikely that I experienced extreme childhood trauma
• My memories were unreliable and fabricated
• A therapist gave me the idea that I had DID, so I was role-playing/ acting (iatrogenic)
• Almost all DID is feigned to get out of life’s responsibilities, or out of trouble (malingering)
• DID is extremely rare therefore, I didn’t have it
• The more I insisted that I had DID, the more denial I was in
• The local acute psychiatric hospital, where I have been over 40 times in the last 12 years, (as recent as Aug, 2018), refuses to acknowledge my DID dx.
One specific incident: IP hospital, after an amnesic episode, I “came to” in locked seclusion, the psychiatrist told me there was no such thing as dissociation and in his 35 years of practice he has never come across a case. He mockingly admired my “ability to put on a show” and said I deserved an Oscar for my performance.
5) Please be trauma informed! There is a spectrum of trauma caused disorders and dissociation that goes beyond PTSD. DID is a real, treatable disorder. If someone reports loss of time or gaps in memory, consider it to be a true symptom they are experiencing. Inconsistency is not deliberate, it is a symptom.
DID is a complex defense mechanism with the primary purpose of denying that trauma occurred. If DID is met with external denial or disbelief, it can retraumatize the person and strengthen the person’s internal denial, which increases symptoms and reverses the process of recovery and healing.
Best wishes on your presentation, Healing.
I too hope to someday be able to help professionals be better caregivers.
Sarah D. (10/21/18)
Sarah D,
I can so relate to your journey on so many different levels. I think going into the mental health field really made me become more “fired” up to want to do something because of what I saw on “this side of the chair.” I think the last straw for me was just a few months ago when I was doing a networking luncheon, and a colleague had the audacity to not only crack jokes about individuals with DID but also asked me very inappropriate things concerning people with DID. For sake of the forum, I will not post them here. I may put them in my blog when I get some time because there really needs to be awareness. And then when I tried processing them with the last therapist (who got fired because of her comments), she told me I just need to keep my DID hidden.
Well, it ended up firing me up, which made me realize how much I need to bring awareness to this vital topic. If I don’t do it, then who will? Probably no one at this point. Hopefully, after I graduate, and continue my education journey towards a Ph.D., I plan on doing research. All this information will really help direct my path with that research.
Don’t give up, you’ll be able to help professionals again, after all, you’re helping me!
Healing
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
A psychiatrist and a mental health facility
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
I’m not sure, because I don’t know the kind of training they received. It was probably based on a stigma because I feel like I didn’t act a certain way to convince them I had DID.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I was seeking a new psychiatrist after my former one retired and I was told by one that I was seeing that I had Borderline Personality Disorder and not DID. It was so defeating because I still feel the same way, still have the same voices and everything inside and loss of time, but I wasn’t DID. I had been told I was DID by several professionals and this one person came along and said I wasn’t. It made me feel stupid.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I would say understand that though there are common attributes of DID, not everyone is going to have all of them.
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
A mental health crisis team, psychologist, doctors
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
In my Grace I think it’s a basic lack of understanding, and ignorance.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I tried to explain to a crisis team worker that I felt afraid of myself because of another part. Sh3 told me it was a personality disorder and I had complete control if I really wanted to. It was likeputting one foot in front of the other, was been words. It was very patronising and showed no understanding of DID at all.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I didn’t ask to have this. I don’t want to have this. It’s hard enough living like this as it is, when I see you I want help not patronising, belittling, judgmental behaviour. If you dontnunderstand DID then find some local training.
Just deleted my whole answers out of fear, shame, feeling whats the point, feeling my experiences not worth anything.
This is what years of bad experiences and wrong treatment does.
The reasons why break you, and the disbelief and ridicule take whats left.
Sky, I care what you have to say. It’s okay if you don’t want to share, too.
Those unhelpful people you were remembering for this reply aren’t here right now. It’s okay to be upset and to delete your post. And you still matter. 10/22/18
Thankyou for being kind.
E.
Hi Sky,
I just want to echo what T.Clark has said here. Your thoughts matter … what happened to you matters … you matter! I am so sorry that you have been so badly beaten up by the system and life that you feel that you do not have a voice. You do here Sky. What you feel and what you have to say matters to us and … it is always so helpful to each one of us in our community when we share our truths. But, I also want you to know that I honour and respect your right not to speak either. You have all the permission in the world to do what feels right for you here. We are just so happy to have you in our community just the way that you are!
ME+WE
10/22/18
Sky,
I want to echo what ME+WE and T.Clark said… and that is what you say and your thoughts do matter. Your input, your voice, it does matter. Your experiences are valued. I know what you experienced was painful but I hope you know that you are important, just like all of us here are important. Everyone’s experience has been painful but that is why it is so important to be given a voice, to be allowed to speak your truth so that hopefully it will make a difference.
I also know how difficult it can be to open up. I want to honor your wishes if you choose not to say anything because the pain is still great. I hope you know that whatever decision you make, you are worthy and you do matter.
Healing
1) Yes, multiple times
2) From both a psychologist (supposedly specialised in trauma) and a psychiatrist
3) Yes absolutely it was.
4) The first one came from the psychologist and once she found out about us she demanded to know the types of alters, would purposefully misspell our names and when she found out we had angry ones assumed they would be violent towards others and forced us to have a “Emergency action plan” for when (not if, she always said WHEN) these angry alters came out and were a threat to others around us. This plan was detailed and included the points of calling the police. She shared this on our file and with other professionals at the clinic regardless of how many times we told her nobody in this system is or ever has been a threat to anyone cept ourselves and that the system is co-con so it would never ever happen.
The Pdoc (psychiatrist) one was during our consult trying to get a dx. She refused to give us the diagnosis of DID and said all these things as well as getting our name, husbands name, parents names and my own personal backstory (after demanding to know our complete trauma history and childhood) all wrong. And using someone else’s physical description in the blurb at the start of the results/findings.
She said:
* That I cannot have DID because its extremely rare and there is someone else in the town with it (the town has over 200,000 people)
* That i don’t have DID because my alters don’t go behind my back and spend all my money without my knowledge
* That i don’t have DID because my alters don’t have separate friend groups and never did in school.
*That me working in child safety was just me choosing to reenact/ perpetuate toxic family dynamics and that i have reactivate attachment syndrome. (She knew nothing of my bond with my mother and never asked about it)
* That i was too high functioning to have DID. (despite the fact that i’d not slept in 3 days and was in crisis)
*That it was likely that my mother only did the best she could and that she was abused too, and therefore it wasn’t her fault she arranged my abuse- that she likely had DID but i don’t. So she didn’t know what she was doing.
*That she can’t diagnose DID until she see’s me switch in front of her. (Within that 15 min appointment)
* That i couldn’t have DID because i knew too much about my alters and was co-con with them most of the time and that the time gaps weren’t enough to qualify.
5) If i could tell the mental health community somethign about DID I’d tell them:
– to educate themselves. New research is bringing out all kinds of information these days and their views are very likely outdated, offensive and pure fiction.
-I’d also tell them that not every single system works the same way and that we do not need to be shoved in a neat little box just so you can feel better about yourself or try to wrap your single minded brain around what’s going on.
-Oh and that EMDR is a valid treatment modality but ONLY for those who have extremely basic systems, very limited trauma and amnesiac barriers still in place. And that it has no place being offered to poly-fragmented systems, let alone pressured onto the patient as the cure all. In fact, its actually extremely destabilizing and downright harmful to large, complex and co-con systems.
-I would tell T’s that co-con isn’t all its cracked up to be. I would make them viscerally aware that its a double edged sword. You are asking your client to trade quality of life and functioning for knowledge of their internal world and accompanying PTSD forever (if they are poly fragmented especially). I would ask them that they ask themselves what they’d prefer and not fall into the trap of what is expected of them. Be humane about it. Sometimes a life is better lived with mild amnesia and high functioning than it is being completely co-con but disabled/traumatized repeatedly forever.
– And finally, i would tell T’s to stop acting like these “parts” are just some small insignificant, or somehow lesser important or worthy bit of the person who’s name is on the birth certificate. Like that that person is the one true person and that these other bits are just malformed cut off bits from trauma times and nothing more. I would stress to T’s everywhere that they are ALL vital and they are ALL important people in their own rights. Stop talking about fragments as if they are lesser too! They matter just as much as anyone. And the person on the birth cert, is no more entitled to a happy life than the most traumatized or angry alter is. This is an outdated modality and its plain offensive, condescending and dehumanizing. Integration isn’t everything- its death!
[if these answers are to be anonymous this public forum nakes it hard to do that. I am not using my actual ID]
1) Yes
2) Various mental health professionals ER staff (medical doctor and psychiatrists)
3) misconceptions/myths
4) The most harmful was when i needed medical (not psychiatric) care but i was alone and not grounded (medical care scares me) and the doctor at the ER mistook my dissiciation for psychosis, put me in restraints (which made it very hard to keep an adult present and up front) and did not assess and treat my medical need until after the on call psychiatrist “assessed” me. The psychiatrist had no trauma training or experience in dissociative disorders, ordered me admitted, the ER doc treated me and then transferred me to psych. I found out the ER doc and first psychiatrist never contacted my psychiatrist and i had to get permission to use the phone, call my psychiatrist and give him the contact info to the unit/my assigned doctor so he could call them. He was able to talk to them and get me discharged.
5) Please actually get trained and experienced. I spent years in therapy before someone realized what my real diagnosis is. I am sure those previous therapists all believed they diagnosed me correctly- but they did not and i did not improve. I have since met many mental health professuonals who claim to be trauma trained and then they say DID doesn’t exist/is so rare they have never ever seen it even with treating hundreds of clients. What I say to them is DID is covert, not overt, I tell them they have been talking to a multiple and they can now say they have met one.
1. Yes, I have, many times. The number one way I’ve experienced a negative reaction to my living with DID is psychiatrists who do not believe in the illness refusing to treat me for it and instead giving me a diagnosis I do not have and loading me up with drugs. I lived inpatient for seven years and was told by the facility director never to speak of my DID to the staff, other residents or my assigned therapist because the diagnosis does not exist.
2. Psychiatrists, counselors, inpatient mental health facilities
3. They believed I had borderline personality disorder and was being manipulative. They had decided that I was only seeking attention, even though I rarely switched alters in public and definitely not in front of them. They had preconceived ideas about DID and applied them to me.
The myth they were going by was that people with DID are lying and manipulating others. That we are so sick that we have repeated our story so many times that we believe our own lies.
4. When I was told to keep my mouth shut about my having DID by the inpatient community, I was harmed beyond belief. My progress ended for a long time because I wasn’t allowed to work on the true problem. The psychiatrist I saw there saw me for 2 or 3 minutes each month. He didn’t believe I was competent enough to listen to and gave me strong drugs I did not need. He once told me I was a hopeless case and would never leave the facility. I proved him wrong.
5. Read the research. Don’t close your mind to DID just because you don’t understand it. Ask questions, seek out the answers, explore the issue from all sides. There is mounting evidence of the structural changes to the brain that are related to DID. At least google it and read about it.
Also, DID IS NOT a fad that only happens in the US. It is found globally even in the orient.
Don’t be closed minded and believe the myths. GEt trained in both trauma and dissociative disorders.
We desperately need future providers of mental health care to have more than just a few hours of training on dissociative disorders. Desperately!
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Clinical Psychologist. But also many negative experiences from the medical community due to somatic complaints and conversion symptoms for years before I was identified as having DID.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
My previous Clinical Psychologist saw me for several years. Despite me describing clearly what I now know to be the DSM 5 criteria for DID, she ignored everything I said. I am not sure of her reason why, whether she didn’t believe in the diagnosis or not but she would never ask about or acknowledge anything I said. My only guess is that she had a very stereotypical idea of what it should look like and I didn’t fit that. She repeatedly said I just had amnesia and I needed to get over it and stop dwelling on it now I had found it out. She cut off any conversation of trauma that another family member had told me had happened and 2yrs was spent doing mindfulness and other things for anxiety which she had put me down as having. She finally wrote a big review letter to my GP who put what was in that together with things I had told him over the years. He told me he believed I had DID and moved me to a new psychologist who assessed me for it and then confirmed it. It took a medical doctor to realise it but a trained clinical psychologist with multiple emails from me describing symptoms and 2yrs of appointments diagnosed me with amnesia and anxiety. After I was moved to someone else she wrote to me and tried to claim that she had just been trying to wait and confirm the diagnosis but I had seen her review letter and she clearly had had no idea.
I had seen a psychologist years prior to that who told me I had postnatal depression when I described my symptoms. I have since been told that what I described back then was nothing like postnatal depression.
So prior to finding out I had DID I was diagnosed with postnatal depression, anxiety, dissociative amnesia, chronic fatigue syndrome, arthritis, chronic back pain, and an unbelievably further long list of medical problems. Once I commenced work on my DID most of my medical problems went away.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
Just being completely ignored when I described what was happening, the strange things and that my life was spiralling out of control. I don’t make things up and I have better things to spend my money on than therapy. I was there for help. Believe us when we are describing what we are going through.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
It is nothing like Hollywood has presented it to be. We can be very subtle in our changes/differences so stop assuming that you will see something dramatic happen and that if you don’t, the person must not have it.
1) Have you ever had a negative experience from the mental health community because you have DID? Yes, though most stemmed from a 2 year experience in one location.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)? Psychiatrist, therapist, mental health ward in hospital, state mental hospital, psychiatric nurses
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID? It was based on their disbelief that it existed. The therapist honestly just didn’t have any resources to understand. The psychiatrist and the psychiatric nurses though were a huge problem. They didn’t believe DID existed, therefore they labeled me BPD and set out to punish me and my alters. It was a very scary experience. Oh and there was an outpatient facility that housed drug & alcohol rehab as well as mental health patients. They were in the same boat of disbelief, until we came back from the state mental hospital after 13 days and they saw an extreme switch – and they saw “me” come back, then they actually realized it’s real. However, the psychiatrist was still in disbelief.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful. Their belief that DID did not exist therefore, I must be faking. Even that could have been tolerated, but then they punished me – instead of trying to help. They took me to court, had me committed to the state mental hospital to punish me for needing mental health services. I was in a bad spot because I couldn’t get any support – no one I was seeing understood DID, except one psychiatrist, but she was “cut from the staff” because of cut backs at the hospital. That was when things fell apart completely.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be? It is real, it does exist. Instead of trying to punish someone for having a diagnosis you don’t understand, try to get to know them as people. I’m human. So connect with me as a human. But to punish me for what I am is cruel, especially considering the way I got this way was to deal with cruel humans.
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Exp 1 – While in a mental hospital in crisis
Exp 2 – Therapist
Exp 3 – Psychologist
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
Yes
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
Exp 1 – While in a mental hospital in crisis (in which I didn’t divulge about DID), another patient confided in me about their own DID and their negative experience with the psychiatrist on the unit. He didn’t believe that DID existed in. In his opinion it is something that is made up for attention and spurned on by a therapist. I already knew that I had to be selective in who I told, but I was shocked that this opinion was so freely shared. How are we supposed to get appropriate help if we can’t even divulge to a professional?
Exp 2 – I sought out a “specialist” for trauma and dissociation. I immediately divulged the DID and insiders. She was extremely harsh. “integration is the only solution.” And she stated that I did not fit the portrayal of DID. I was too quiet. I only saw her twice. She had me read a book that was about integration and I couldn’t even get past page 19 without being extremely triggered. I only saw her 2 times. It was a complete disaster. For being an “expert”, she was awful. I don’t fit in the box. No two cases are the same.
Exp 3 – When I finally told my therapist what I thought was going on (after soooo much research). He made some remarks about not seeing in presented in the ways he’d seen before. (which was very hurtful) He talked to a psychologist (with whom I had testing with the year before). She said it wasn’t possible. Really? Because you spent 5 hours with me on one day, you can determine that I’m not telling the truth? When I answered the questionnaires correctly but backtracked when questioned about it.
4) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
This is a real disorder! And no two portrayals are the same. I understand that there are some people out there that lie about having different disorders – but that is the exception rather than the rule. It is not an easy life to live and we didn’t “choose” to have it (although some of us can imagine living life any other way). We are humans that are deserving of care, empathy, and validation –things that were probably lacking in our early childhood. If you have a question, ask us – then listen non-judgmentally to our answer. Integration is not always the answer.
CD 10/22/2018
Lotsa replies. Will keep this basic. My thots.
Dissociation(diss) is on a continuum. A person can vary where they are on continuum from time to time . It’s not necessarily static.
Every diss person is different. What works for one might not work for another.
Diss is not all bad, there’s lots good about it.
Key for me – not all diss people have horrific trauma. This was such a problem for me. Providers kept being convinced that I had big trauma.
Yes, hard to find decent Diss T. I was lucky I had a very good one. But she got old and now she’s dead.
I wish they would do more training bout Diss so people could get care. Though it mostly too expensive anyhow.
My old T gave me a deal.
Somes didn’t really understand her but she was good.
We miss her some of us.
Like many others have mentioned, I no longer tell medical personnel the truth about my mental health. It is too dangerous to do so. I am even extremely cautious about what I tell therapists, psychologists, and psychiatrists, because I don’t feel that most medical and mental health personnel can be trusted to handle DID appropriately.
1) Have you ever had a negative experience from the mental health community because you have DID?
• Yes, several times over
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
• Psychologists
• A psychiatrist
• Support group participants
• Support group facilitators (including a professional psychologist who “specialized” in trauma therapy
• A retreat for adult women survivors of childhood sexual abuse.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
• Definitely
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
• The professional therapist who was a facilitator at a group for survivors of abuse told me that because I have DID, that I was “too unstable” to attend her group and to cease attending. This in spite of the fact that I was one of the more stable individuals there. She was supposedly a specialist in trauma therapy.
• At a support group/class for DBT, I was prohibited from mentioning DID in any way, shape or form (this before I knew that there is a stigma against DID). One day another participant said: “At least I don’t have DID/MPD!” I feigned innocence and said, “Oh? Why is that?” The participant screwed up her face in a look of abject horror and said in as nasty a tone as possible: “Sybil!” Before I could educate the participant about what DID is really like, the therapist leading the group put an end to the conversation. The message was clear—it is fine to disparage DID and individuals with it in class, but not to set the record straight.
• My insurance told me “We don’t treat DID because: it doesn’t exist.” Another individual within the same insurance company told me that while he believes it does exist, “It is wrong to treat DID because acknowledging the insiders encourages them to come out and thus prevents healing.” I wanted to tell him: “Oh, so if I had a broken leg, you wouldn’t treat it because doing so might make my other leg break as well? There’s logic for you!”
• The retreat for Adult Women Survivors of Childhood Sexual Abuse supposedly are specialists in trauma therapy, but the professional mental health person in charge of admissions obviously was anything but up-to-date on her knowledge of DID. She said we must be fully integrated in order to attend, because otherwise we might present a danger to other participants. A representative of “An Infinite Mind” (AIM) later told me that this retreat is very backward about DID, very un-knowledgeable, and that “AIM” is attempting to educate the retreat’s staff about trauma and DID so that they will stop actively discriminating against multiples. Unfortunately, the AIM representative said that they are having little success with the retreat, as they are particularly recalcitrant about educating their staff about DID.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
• It isn’t necessary to be integrated to be healed—internal communication and cooperation is often just as good, if not better. Each system has their own needs—listen to your client and find what will work best for him/her.
• We aren’t dangerous because we have DID. We simply have a natural response that was developed in order to survive the unimaginable. Those who abused us are the real psychopaths and the danger to society, yet they often get treatment before their victims will.
• DID isn’t rare. My current therapist believes that most people who come to therapy actually have some form of dissociation that prevents them from being able to heal, and until the trauma and its subsequent pain is dealt with and healed, that the dissociation will not cease to exist.
• Acknowledging insiders doesn’t encourage them to act out, it encourages them to seek their own healing
• Mental health advisors & physicians all need to be trained in trauma and how it affects human psychology—especially when it comes to DID
• Please call insiders by their names. Talk to them as if they are real people, because they are.
• Don’t force another alter to come out. This is for the client’s safety, as there is a reason that one alter is out and not another one, and that reason is to protect the client.
• Find a healing way at the end of the session to help littles go inside and have a responsible adult come out to drive. If this is impossible, please provide a safe place for this process to happen normally and naturally. I can’t tell you the number of times I haven’t been safe to drive, but have had to leave the therapist’s office with no place to go to be safe until someone was available to drive.
• Don’t tell your clients that they are lying about their insiders, about being multiple, or that they have demons that must be exorcised.
• Please do tell your clients that DID is a natural response to horrific trauma that they survived. Help your clients to understand what is happening to hem and help them develop internal communication and cooperation. Help your clients to heal the trauma and the internal pain.
we were told that at two support groups also. they didnt want us there because we had DID, and might be too unstable, and might “harm” the others in the group.
1. yes have experienced negative reactions from mental health community
~ but also need to express that my did diagnosis happened about a year ago
(although was tested for autism between ages 3-4… and found these records as an adult, and would say ay age 4 i told the dr my experience of dissociation- it wasn’t caught back in the early 70’s) and i have sought treatment to fix me for 25+ years w/o understanding or knowledge of having did
2. the negative experiences came from 2 emergency mental health patient hospital visits. the first time was told by the er psychiatrist i didn’t need to be there, and if i just did x, y, and z once out i would be fine- granted this was my first ‘breakdown’, seen in a medical/mental health setting, where for me was i wasn’t understanding what was going on with me- just knew i needed help-
from my own studying and working in mental health field- my experiences were definitely not trauma informed care…
now i can look back and see more clearly why the being seen and heard was so needed, and at the same time my own history of shame and not wanting to be seen and heard…
by my 2nd time there at same hospital, i’d received a diagnosis of did… this time, i was handed haldol and ativan and told i needed to take it- thankfully i had asked, and did not take the haldol- it was a fight though- i was fairly shocked that they were trying to medicate me just in case…
later when talking with psychologist dr on the inpatient side- i don’t know the who of me, but i yelled at her- as she was boxing me into a corner and didn’t believe the did piece, or that i might know at least some of what i needed.
also, when i left hospital, and step down location i was referred to a clinician at a place that focuses on trauma, i believe he was an lpc- first meeting with him- explained recent hospitalizations, newly added diagnoses of did etc… he stated something to the effect he didn’t believe i had did, and that i would be ‘fixed’ in 6 weeks with him performing emdr…
did not make another appt with him… was referred to another counselor, and she at least talked with supervisor and i was given a huge long questionnaire to determine where i was on dissociation vs did scale…a test that shows the did piece.
also to clarify how i remained somewhat ok during all of that, is that i have a very trusted counselor that i’ve been working with for 13 years… and she has worked with did clients, but i just hadn’t opened up enough for either of us to see the did piece until things came to a head last year…
3. i think the not knowing of what providers didn’t know- left them believing did isn’t real/ or couldn’t occur in myself as i presented ‘stable’ for much of my adult life/media has played a big role in how many think did should look/ and possibly wishful thinking of wanting there to be a ‘box theory’ to contain the possibility of chaos that can occur with did
i also has a dr i was seeing who put bpd as one of my diagnoses- and when questioned, stated i would qualify for more services- so not true- and did stop seeing him
5. i would want mental health community to treat us with dignity and respect/to not shame us more by not believing or even trying to understand/to not run away from us scared/we are doing the best we can/by helping us not tricking or lying to us/to be willing to engage in a longer therapy relationship/have patience with us/to not change us, to get to know us
i will add, for me- as this has taken so long for me to become diagnosed, and all that comes with that- i actually try to be fairly open with other medical providers, because i’m still in the learning curve of not always knowing how i might respond- and i don’t want to have a random reaction w/o a tiny piece of heads up, even if i only share i have complex ptsd
1) Have you ever had a negative experience from the mental health community because you have DID? / 2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Yes, from a psychiatrist.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
I think it was more about “one body = one mind” idea that people usually have.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
It was with my last psychiatrist. We finally had the courage to talk about our system to her. She asked questions about how we were functionning together and we could feel she was searching for psychosis. We knew it would happened and we answered as clearly as possible to her questions.
Next session, I asked her directly what she was thinking about us, and she said she first thought about psychosis, but she was sure it wasn’t that, so she didn’t know what it could be.
We were happy she was being honest with us, so when she asked questions, I answered without being stopped by the others. But then she asked if we wanted to merge into one personnality. I answered that “we, as a group, don’t want to, even if some of us want to merge”.
She said “But I’m just asking you, [body’s name]. What do YOU want ?”
Daem took over, looked at her right in the eyes and said “But you’re not talking to her right now. We take our decisions together, and WE don’t want it.”
We stopped there, and she never brought the subject again. We stopped to see her one or two sessions after that.
It was really frustrating and painfull to see that all of our efforts to build cooperation among ourselves were just ignored like that. And also, it convinced the others that psychs are just good at hurting people when they don’t know what to do with them, instead of listening to them.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I’m gonna translate to you (I’m French) what I’ve posted on the Facebook wall of my psychology class, after an argument I had with a professor who told me that dissociative disorders were psychosis :
“I’m sick of hearing ‘psychosis’ each time I say ‘dissociative disorders’. If you want to know more about dissociative disorders, I request you to read “Psychothérapie de la dissociation et du Trauma” (sous la supervision de Joanna Smith, 2016) [it’s a french book, the only one up-to-date about dissociation].
For those who don’t want to spend their money, you have [my website] where I translate articles about dissociative disorders.
And for those who want the short version :
– Dissociative disorders are not always comorbid with psychosis
– They are NOT psychosis when alone
– 1-2% of the population has DP/DR
– 1-3% of the population has DID
– Specialists of DD admit that the numbers are lower than the truth, because psychs aren’t educated enough to spot the dissociation when it’s not comorbid with psychosis.
Source for the numbers : http://did-research.org/research/prevalence.html
https://www.ncbi.nlm.nih.gov/pubmed/15022041
And for the rest, you can find it on my website.”
For those who wonder, the prof tried but didn’t had the last word of the argument. I didn’t planned to argue with him in front of the classe, normally I do that after, when there’s no one else to look and hear, they are far more receptive. But he tried to make me look like an idiot in front the others, saying that I should read things about dissociative disorders. He ended up being the idiot when I told him I already have, and that’s why I say it’s not psychosis.
He finally admitted that dissociative disorders can happen alone without psychosis, but “only to a minority of people who had experienced some… hard, bad things”, and I stopped here before annoying him too much with details. He’s still the one who gonna give me my grades, after all…
(sorry if I posted it twice, my computer isn’t working proprely and I don’t know if it posted it the first time…)
Kathy, I don’t know if it’s alright to publish things about cause (and prevention) here, so if you don’t let this comment through I understand.
5. If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I would tell them that a lot of the stigma, misconception or myth is due to a coordinated campaign of lies and deceit to cover-up criminal government linked projects which include child abuse.
In brief, through experience of the mental health system and recently taking part in a trauma survivors support group I have become aware that a lot of inneffective psychiatry and psychology is being used, and what is worse is on investigating the source of these practises they are found to have close links to military intelligence, the CIA, military psychology, MK Ultra, and thus to the abuse cult.
These include the American Psychiatric Association (APA), the Diagnostic and Statistical Manual (DSM), positive psychology, behaviour modification (CBT,DBT), thought re-programming (NLP), New-Age psychology and the False Memory Syndrome Association. Work on attachment trauma and co-dependence and articles by university trauma specialists are notable for the ommission or downplaying of the role of extreme and organised abuse networks and projects in the cause of mental health problems.
NLP, positive psychology and behaviour modification work together like a trident, aiming to reprogram the survivor’s front personality as a new positive self with corrected thoughts and behaviour. This produces coping without healing, symtom suppression and re-inforces amnesia.
1. Yes.
2. My Psychiatrist, when I told him I was experiencing the thoughts and emotions of different people inside, told me that they are all me, in a very aggressive tone and dismissed what I was saying. On a different occasion one of my alters met with him to let him know what was going on. The notes on the chart said, “starting to talk in terms of multiples, not a DX I favor.” My PCP didn’t want to keep the fact I was dissociative out of my medical file, even though I had told him I had bad experiences with it, because he didn’t believe it would cause me complications medically and that he didn’t believe there was a stigma around it anymore.
3. It was based on the fact they don’t believe it exists.
4.Same experience
5.Being yelled at, or dismissed does nothing to help the situation. Thank god my counselor helped me figure this out. I just recently have had the last of my alters integrate. Prior to the diagnosis from my counselor I had other counselors tell me they didn’t know what was wrong and couldn’t help me. I was terribly suicidal and I am not currently suffering from that anymore. Please believe folks that have these issues. I can in no way explain how I had 11 different people inside with 11 different perspectives, differing dominant hands, and different pieces of the same memory. I do know that my counselors understanding, empathy and belief in what I was going through has helped me to heal.
1.Yes I have had negative responses
2.It was a therapist I was seeing…
3 She didn’t seek training to help me. She got by doing the minimum. She didn’t know how to talk to my inner ones but she didn’t find ways to do so. She was willing to do what I/we asked But it was up to me to come up with a plan for our healing. She didn’t offer ideas we could try. She let me know she was not able to see us more than the once a week time for an hour. She didn’t try to gain the trust of the inner ones. She was not aware when the inner were around. I guess I always gave 150% to my students in school nd we didn’t understand why she didn’t.
4.Yes I do think it was based on a misconception. I’m not sure she believed me/us and the horror we went thru.
5.There are many resources out there nowadays to help therapists learn about the TRUTH of DiDness. Study and learn..Your client deserves that.
I am no longer in therapy as each therapist I worked with seemed like we had to train them and that can be exhausting. Sooo nowwe work together as a system, learning and journaling and reading new books that come out. We so wish we had had the support but being who we are..DID people.. we find a way to make lemonade out of lemons so to speak..
Thank you for all you are doing and will be doing to help tear down the stigma, misconceptions about “us” 😊😊
pilgrim says
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes; us with DID are labeled under the “freaky” mentally ill people; those with non-personality disorders or dissociative disorders see us as the bad side, the ones who actively hurt the community because we’re “too much”. It hurts a lot.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
I had to go into a mental facility for about a week after a suicide attempt; the nurses and doctors refused to treat my alters the way they needed and addressed us as if it was always me (using big words and being like ‘if you don’t do this you’re bad and will stay longer’ doesn’t help calm down a literal toddler). They straight up told me they won’t help regarding my DID as they only really help those with depression. They were also cruel regarding my dealings with hallucinations.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
For sure. We’re seen as loose cannons, serial killers who are just waiting to be ignited into a violent fury. We’re seen as “weird creepy kids” when it comes to child alters, “delusional” when it comes to animal or demon and angel alters, “abusive” when it comes to protectors and persecutors. The movies ‘Split’ and ‘Sybil’ didn’t help.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I’ve been randomly accused as an abuser because I have my diagnosis written on my blog. Supposedly DID is just what people claim to have so they can excuse being terrible people; obviously BS, but it really hurt.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
Do your actual research. Don’t use “endo/tupla/fake” systems as ‘proof’ we’re liars and terrible people. Stop mocking us. Learn to care about survivors who may have gone through things that are not common. Be a decent person.
1) Have you ever had a negative experience from the mental health community because you have DID? Yes!
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)? I have had a psychiatrist who didn’t believe me and actively tried to force me to accept a different diagnosis. I have had a therapist who was specifically trained to treat DID and other dissociative disorders who met some of my alters and then turned around and tried to tell me I couldn’t have DID because my system was “too strange”. I’ve had multiple therapists and a mental health hospital try to force medication on me despite my attempts at explaining my bad experiences with them due to having DID.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID? Definitely.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful. Most of my negative experiences related to the misconception that DID isn’t real or that it is extremely rare.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be? The biggest thing would probably be that DID is real and is not rare! There are lots of us out there and we need help! There is more and more growing proof of us and if people would take the time to study this then they would see that too.
1) Have you ever had a negative experience from the mental health community because you have DID?
I was once in a group, and someone mentioned someone having DID, and being in group with them was just “weird” because you never knew who you were talking to. (Their experience was in another group). They did not know I had DID.
I had a therapist tell me she didn’t think I had DID just after being diagnosed. She refused to do DID work with me b/c she said it wasn’t me.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)? one was a peer group, another was from a counselor. A psychiatrist said he thought it was “really rare” so he wasn’t sure I had it.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID? So the myth is that DID is rare, really it isn’t according to research. One counselor was making a judgement too quickly. I ended up firing her.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I felt invalidated when the counselor said DID is not my diagnoses. I was in crises after hearing my diagnoses.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be? Most people with trauma have parts. It is a NORMAL reaction to extreme trauma and abuse.
Healing here!
I am a bit overwhelmed by all the responses. Thank you so much! I am going to do my best to respond to everyone because I know how much courage it takes.
Hi Healing,
I am pleasantly surprised by the number of responses as well although the common threads of the stories told are disheartening. It is so powerful to hear so many voices though.
But, say Healing … it is a wonderfully sweet gesture to want to reply to everyone here but you have a project to get together. I cannot speak for the others but, I sure would like to see you just concentrate on that project and blow the medical/psychological community away with your research findings! You can thank us by rocking this project and letting us know how it was received.
ME+WE
10/23/18
Hi ME+WE!
I am thankful for all the responses from everyone. I honestly did not know what type of responses I would get BUT I will just say, this lets me know how much our voices need to be heard! I actually have debated about presenting but after a couple of negative situations that happened in my own life in both academia last year with the non-believing professor, and then just a few months ago in with a colleague and then a former therapist, well it made me realize that if I don’t do this, then who is going to. I have an opportunity and I need to use that opportunity.
And THANK YOU for reminding me to focus on the poster because I have been honestly OVERWHELMED with the task that is set before me. I found 21 current literature peer-reviewed research articles that are DID positive articles. I just have to sort through all the info to get it to all fit on a poster. Thankfully the responses here will help narrow that down.
My hope is that this will blow the medical/psychological communities socks off. I do not believe this will end at this conference but I do believe that this will be the beginning for awareness for DID. After all, awareness is the key.
And if Kathy will allow, I will give an update after the conference is over of how things went because everyone who gave input I think deserves to know how it went.
Healing
Yes, absolutely, Healing — we will want to know how things went! We can discuss this more via email if you’d like, but this whole experience and what you are learning / teaching / showing a giant room full of counselors will surely have an impact and a ripple effect on many lives.
For example…. my start to working with DID happened because the local Psychologist went to a conference where Colin Ross was teaching about DID, and that conference experience gave the Psychologist the confidence and the information to be able to diagnose a young gal, who then became my first ever dissociative client …. and THAT, 30 years later, led to all of this that happens at Discussing Dissociation.
SO… what you present at a conference can truly change lives, that’s for sure!
Keep up the good work!!!
Warmly,
Kathy
Hi Kathy!
Taking a short break here! I need a brain break but I can honestly say, with everyone’s input, I am truly motivated why this is so important. AND YES, everyone’s voice matters huge! I honestly debated for the longest time about doing this because I didn’t want to put my own self at risk. After processing in therapy of my own discomfort and fear of taking a risk of being exposed at this conference, and then seeing everyone’s responses, I am absolutely positive that this is what I need to be doing. This is vital for not only me, but for anyone who has ever been hurt, or those who haven’t yet found the courage, or those who are still not at a place of safety or comfort to speak out. My hope is this presentation will change the way the mental health community treats those of us with DID.
As I’m going through the articles, all I can say between each one’s responses and what I am pulling out of the articles, YES THIS POSTER PRESENTATION IS ABSOLUTELY VITAL (sorry for the emphasis). It’s sort of like a huge puzzle. The research has already been done. I just have to pull out the important stuff based on the responses and let the mental health community know HEY, WAKE UP!
One other thing, I don’t know about anyone else but everyone’s response is all too familiar. I hope if nothing else through this, it lets each of us know in this community that we truly are not alone because all though it was scary to share some difficult information, it also lets someone else in this community know that they also experienced something similar. I know for myself because each one was willing to take a risk to help an important cause, I can say I feel validated and no longer feel isolated.
Yes, I would like to discuss this more via email once the conference is over, which will be in a few short weeks. I was very excited about your story you shared about the young gal you worked with, and how you found each other again! This gives me so much encouragement and hope.
Thank you and the DD community for helping me.
Healing!
Healing,
And sharing your project with all of us here. You have got a lot of data from just one source. “Discussing Dissociation. “ The wonders of social media. you get so much input from so many individuals, personalities , and DID Survivors.”
We saw a male psychiatrist once who was an idiot. It was back when Missy was in charge, so a male doctor for her was a bad idea in the first place. One day he sarcastically asked her “ those ‘alters’ been acting up again?” and she went off on him. Big time. Like theyre a bunch of toddlers, or wild dogs. I dont think we ever went to see him again after that.
We also had a therapist who spent a very long time refusing to talk to anyone but the “real” 🙄 person, and if any inside people wanted to talk to her than they had to talk through the “real” person. That made everyone inside really mad, upset, and made things tons worse. Of course, the person she thought was “real” was a 14 year old alter as well. We are not sure how the therapist came to the conclusion that she was the “real” one. That inside person has since disappeared.
I had a popular online forum for people with DID. I dont know how many times I got personally attacked, told I was faking, accused of lying, etc. All I was trying to do was help people, and instead I repeatedly had our DID thrown in my face and used against me, and people spread lies and false rumors on the internet about me. A bunch of the online community ganged up against me. It was not a fun time.
I would like to tell people who want to help with DID:
1. we know ourselves better than you know us. if we tell you something inside is true. it is.
2. dont rush things. dont try to meet everyone all at once. its going to take years and years for us to trust you, and trust can be lost by tons of million little things. it may be many years before you meet everyone inside.
4. be consistent. we need to see 10,000 examples of ways you can be trusted before we will even consider it
5. dont tell us we are lying.
6. dont use big words if youre talking to a five year old or a two year old. they might smile and nod, but they have no idea what youre saying. Our jadie and mae and several of the younger kids are perpetually confused by how grown ups talk.
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
I was hospitalized in April 2017. (My last hospitalization before that was in 1992) It was mixed reviews. The counselors and doctors did very well. But as for the and staff /healthcare workers/ not so much. They did OK they tried to understand. Most of the times they were off base. It’s seem to me after 430pm and the professionals went home. I was on my own. I did more help to others instead of focusing on myself. The best part was it was requested that I stay in the hospital until an anniversary date had passed. I agreed I thought what better place to be. so I could feel the feelings. April 13th came instead of all the emotion that needed to come out. I was given Ativan And more Ativan then even more. Released the next day. Do I regret my hospitalization no I do not. Do I think I should’ve been so heavily medicated on April 13 no I do not. I can tell you one of things about having DID is , it helps yourself to be removed from extreme stressful situations. So the question I have still today. Did I get all that Extra medication, so I wouldn’t act out. So they wouldn’t have to deal with a person with DID?? A Personality just order patient feeling extreme emotions. We’re they afraid of what would happen? We were not emotion were wrong . So that got reinforced by keeping us medicated.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
Not sure
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not
This would be misconception: the words that what happen then is not now. When we are feeling intense emotions. We can’t understand that now is not then. You must be better word age to help train the past to the present.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
That if one of is sick or hurting, the rest of us could be fine. That when it comes to physical elements we are just as much individuals as a Singletons, Medical Doctor, Therapist, Counselor, Psychologist, Psychotherapists, And Mental Health Worker. If any of you cut your finger, will your partner, best friend or children feel it. Maybe emotional they could but not physical. That is the same for some of us. 🤑
I think it’s important to recognize that even though there are some mental health professionals out there that are having trouble understanding this disorder. There is also a lot that do. This system is very fortunate to have Had good reactions with our mental health professionals. Yes we have dealt with some that have no clue. But for us , the a positive interaction and batting average is high. Even with those high batting averages we have had a few strikeouts from our positive therapeutic interactions. Not everyone can be perfect and get everything right. That’s the funny thing about being human. Mistakes are made in hopes that they will also be corrected, and learned from.
10/23/18
1) Have you ever had a negative experience from the mental health community because you have DID?
Yeah.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Non-trauma-trained psychiatrists/psychologists, friends, family.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
I’d say a combination of both. All those seem to have discouraged people from learning what DID actually entails.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
A psychiatrist didn’t bother to ask how I feel about the “voices” (of my alters) and instead gave me meds that shuts down everyone instead. I grew up with “these voices” and although not all of them are nice, they’ve been a friend and someone to lean on in the hardest of times, so making them disappear without asking how I feel about it hurts me. In the end I asked him to drop the meds because it didn’t feel right to be without all of them.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
That I’m not a serial killer. I have obssessive thoughts, which would fall under Pure O (of OCD) and not so much because I’m a serial killer with multple personalities. All of the alters I’ve grown up with can be cold and annoying but none of us would go out on a killing spree, especially if we like and appreciate you.
1) Have you ever had a negative experience from the mental health community because you have DID?
Of course! Is the Pope a Catholic?
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
I saw approx 6 psychologists (mostly 1 -2 sessions), 1 psychologist for 30 months ( but only 5 face to face sessions. Mostly emails) and 1 Psychiatrist (for 16 months) plus a GP with membership of College of Psychological Counselling for 10 years!
I am a “classic case” ……..took me 7 years to find the GP who actually listened, used EMDR, TRE, inner family therapy, hypnosis for calming , “believed in parts”etc
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
!!!!! IGNORANCE pure and simple……well meaning people but the level of BAD TRAINING IN UNIVERSITIES was mind-boggling! Total myth and misconception filled field!
1st myth (which had them literally saying I didn’t have it)………DID is “extremely rare”……….
it absolutely is NOT rare. I belong to a church of approx 250 people……..I know of (at least) 2 others who “have parts” in my immediate sub group alone…….this is not something they reveal in casual conversation so how many others are in that 250??
BTW……..both revealed
verifiable major childhood trauma to me but 1 has had no therapy (major switching I observed) and the other puddling around for 15 years with incompetent therapists (as I see it) still dealing with frequent migraines, pain syndromes, “blackouts” and still unaware she has parts! I encourage her, but tread lightly with her……….just let her know that I am DID and left it at that for now, since her therapists seem unhelpful and dealing with symptoms not her parts…..
2nd the reason I saw so many Psychs was they were mostly CBT trained and the Psychiatrist was “Psychoanalytic” ……..basically left my child parts (and teens etc) feeling silenced, rejected and worse than before………1 Psych I saw for 1 session (and then ran from as fast as I could) demanded I see her 3 sessions per week plus including my husband in my therapy (he views mental illness as total weakness!), plus have a backup MD to prescribe meds (I am a natural health person-no drugs for me!)……………not only was she too expensive ,she was bullying me!
1 Psych stopped me mid sentence 1/3 of the way into our 2nd session to give me a referral slip of paper (to the Psychiatrist)……..end of session/end of her……..not very reassuring …….more of “You’re too damaged/sick for me to deal with!”
My talk of parts freaked 2 other psychologists out as well, so I never went back for a 2nd session
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
Much of the above was hurtful as well as not helpful.
The only reason I persisted for 7 years and finally found the GP (10 years) was the psychologist I saw 5 times in 30 months was a very poor boundary setter ……….I met her family, she met mine. I helped her move house, gave her money to fly interstate, the sessions rambled on ………..she was my first experience of therapy (I was suicidal and had PTSD flashbacks etc) and then she became overwhelmed and dumped me without notice………….VERY painful………so I kept looking for someone to help with the pain SHE HAD LEFT ME IN (plus the drinking , started by my PTSD, got much worse)
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
We have been mistreated many times.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
We were sexually assaulted at a hospital after being admitted for a suicidal attempt. The male nurse found out we had DID and took advantage of our instability.
We have also had many therapists who have. One therapist said we had a serious mental illness that could not be treated and we stood very little chance of ever getting better.
Other therapists have quit treatment early, or outright refused to treat based solely on our dx. This is very disheartening when it is done repeatedly.
Most psychiatrists we have had over the years have refused to diagnose the DID to begin with. We have only had two who have. One was Dr. Collin Ross.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
Yes. In fact as we wrote above one therapist told us we would never be better and that DID was not treatable.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
Most negativity has come with the misconception that we cannot be treated. Some have been afraid we would cause harm.
The most negative thing that happened was due to our own instability. We don’t believe it would have happened if the person who sexually assaulted us really understood what was happening. We did.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
We would want mental health professionals to at least give the DID community a chance at treatment. Stop being afraid of us. Learn more about DID. Understand that we are treatable. That a lot of us have trust issues.
Don’t leave. If at all possible. Stay with us until we quit if at a
Possible.
1) Have you ever had a negative experience from the mental health community because you have DID?
– Yes. The one time we were desperate enough to ask for “official” help they nearly killed us.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
– He was a psychiatrist, and in fact the entire service was very hostile, he was just the final straw.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
– Oh yes, he believed that DID wasn’t real so therefore I had to be lying about everything.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
– We needed help, we were very nearly about to kill the body, so we braved asking for help and they refused to believe us about being a multiple. The assessing nurse simply refused to believe that DID was real, instead she decided that we must be lying, that because she couldn’t get her head around multiplicity that it couldn’t possibly be real. They blocked us getting access to a psychiatrist for eight months. Eight months our old host was suicidal and trying to kill the body every time she was conscious, and eight months we were begging them for help to stay alive and to access DID appropriate care, and they simply refused. Eventually we convinced a psychologist to help and we got to talk to a psychiatrist, but he point blank said that no, DID wasn’t a real diagnosis, and therefore we were just a malingering liar. He decided that absolutely everything we said was a lie, including when we told him that our body reacts really badly to SSRI anti-depressants and sedatives. He told us that we didn’t have DID, that instead we were psychotic and a chronic liar. He wrote a script for three kinds of psych meds, two of which would have made us worse off or even led to our suicide, and told us that we had to take these meds because they’d “help” and then they would only help us if we admitted to being a liar and submitted to his treatment plan.
And so after all of that suffering and desperately trying to get some help, and having the courage to finally admit to ourselves what was wrong and to tell someone the actual truth… we then had to lie. We had to lie and tell them we were OK and no longer needed the service so they would discharge us. We had to protect ourselves because they were hurting us, not helping. And then we had to go through the two year process of going private and getting funding… and we still don’t have proper DID care four years later because New Zealand sucks for DID care.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
-A doctor shouldn’t get to say a fully researched and proven diagnosis doesn’t exist just because they don’t “believe” in it. Medicine and psychiatry are supposed to be sciences, not religion. Every psychiatrist should follow evidence-based practises, not following their egos and false beliefs.
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes. However, stigma and misconceptions are “not” isolated in the DID community. It is in the fabric of society. Nevertheless, being diagnosed with DID has brought on a plethora of negative experiences.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Psychologist, Therapist. Refuse to even broach the topic with the psychiatrist.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
*I am using these definitions of the three words.*
Stigma (a mark of shame or discredit) and misconception (“a wrong” or inaccurate idea or conception) seem to be accurate across the spectrum of mental illness. Where the problem exists specifically to the DID diagnosis is in the “Myth”-an unfounded or false notion (an individual’s conception or impression of something known)it is the MYTH around the diagnosis because of the “individual conception or impression” is not always based in science as said many times before in the comments above. Not a single practitioner would bulk at the criteria of other DSM 5 diagnoses. If a person is psychotic; with delusions and hallucinations, or has mood changes, or OCD, or GAD, etc….they define the behaviors, quantify and qualify the behaviors, and accept the behaviors according to the DSM 5 criteria. In the case of DID (DSM 5) too many practitioners fantasize that somehow their “individual conception or impression” outwits science. It’s why so many people diagnosed with DID are first misdiagnosed for an average of 7 years.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I am glad you asked for “one” there have been so many so it is difficult to choose one. But I have one that I have fought with hardest and longest. The diagnosis itself. For over 20 years I have been misdiagnosed as every possible DSM 5 diagnosis that fit my symptom profile, most of them explaining why it could not be DID. Well in the community (you may call it system) everyone has a story and a way of being. It sounds confusing and sometimes unreal so imagine” how it feels” to be part of the community. Each time the diagnosis was “not” DID I celebrated, rejoiced, and proved it can’t be DID. When a therapist finally refused my bravado and asked “me” to disprove the reality or possibility of this mythic DID, using logic and science it was unrefutable. ALL the symptoms unrelieved with the separate treatments and combinations of the misdiagnoses offered ‘no relief.’ The negative experience then for me was the suffering and deceit I had about us for all those years. The police were called unnecessarily, medications prescribed inappropriately, treatment plans based on science failed, and I was still symptomatic. If all else fails practioners, what do you to lose to try a DID diagnosis?
Psychologists were the biggest offenders because they used their testing tools as solid proof, I was faking or exaggerating. This was the biggest “afront” to my reality. Not many know of the diagnosis I now carry and I admit I too still have my MYTHIC DID moments, but for the first time in a lifetime of treatment, there is a movement toward decreasing the intensity, duration, and frequency of the symptoms. Without this evidence, I might have too believed I was one of those who is “refractory” to treatment.
We need the appropriate treatment in appropriate environments to heal. We no longer need to victimized by an industry that believes there is no ” real recovery” from mental illness because the truth of the matter is that DID has a high “recovery rate” if treated ‘appropriately.’ There is no other statistical truth of “real recovery” in any other diagnosed mental illness. What that recovery looks like to those with DID is personal but the proof is in the decrease/elimination of stated problematic symptoms and an improved quality of life.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
When providers believe their own individual certainty over patient complaints and lack of patient wanted outcomes dissonance begins and suffering continues.
Side note: I personally struggle with “the diagnosis,” some days are better than the next, but I don’t settle for easy answers, or easy solutions anymore. I allow for; possibility and potential, miracles and mysteries, and have embraced the companions of hope and despair. I want my provider to walk with me not lead me, to hear me, see me and value me. I do that for them, am I in lesser need for the same?
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes, lots of times.
2) If yes, what type of mental health community did you receive this negative experience from (i.e. psychiatrist, psychologist, therapist/counselor, mental health facility, hospital etc)?
Psychiatrist, psychologist, therapists/counsellors.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
I think that now but not when these experiences happened. I have a very kind and competent therapist, and we’ve had to work on undoing the harmful effects of these experiences. I always knew that what was said was wrong and it affected us deeply but it’s hard to not end up believing what it said by someone who is meant to be a professional.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
My GP sent me to see a psychiatrist because I had reacted badly (physically) to the different antidepressants I’d tried. This was simply meant to be a discussion about medication and nothing else. However, the psychiatrist decided to do a complete psychological evaluation and turned the appointment into something I wasn’t expecting or wanting. At the time, I had been seeing a clinical psychologist who is the head of my local trauma clinic. The psychiatrist accessed her notes and read them out loud to me. I can’t remember what he read out but I know that there was information about my past of which I wasn’t aware. It had been shared by some insiders during the sessions with my psychologist but unknowingly to me (and her). It was very traumatising for the psychiatrist to read those notes out loud and I can remember the intense headache I had from being exposed to information I wasn’t ready to hear. I dissociated in response to this and the psychiatrist became very angry with me. I do remember him telling me that dissociation (of any form) doesn’t ever happen and people only pretend to get attention, making them dangerous. He told me that I’m dysfunctional, that I couldn’t have experienced the level of abuse I was talking about (and I know so much more about my past now than I did at the time…) because that just doesn’t happen, and he ended up diagnosing me with Borderline Personality Disorder. I don’t agree with that diagnosis at all and neither does anyone who has diagnosed me / worked with me since.
As much as I did like the clinical psychologist (the head of the trauma clinic) I used to see, I found the sessions very difficult. It took a lot for me to admit that I was struggling with symptoms that didn’t fit the CPTSD diagnosis I had been given. I even had a friend, who has medical and some mental health training, come with me to one session to describe what she had witnessed in me. This friend knew about DID and recognised it in me. My psychologist asked me to keep a record of all dissociative experienced I had. This was mostly other people making a note of what I said/did because of the amnesia. My psychologist told me that she didn’t think I had DID because, in her words, I wasn’t coming to each session, behaving very differently and announcing that I was someone else. By this point, I was sure that I had more than just CPTSD going on and I was struggling more and more with the sessions. My psychologist wanted to create a timeline of all my trauma, which meant that she learnt about past experiences from some insiders but she didn’t notice the differences between us, and those are differences are noticeable. I got to the point where I realised that seeing this psychologist wasn’t going to help me when she and I discussed whether I should try to get a formal DID diagnosis. I’d had about 20 sessions and clearly wasn’t getting anywhere at all. On the NHS, I couldn’t have more than 40 sessions of individual therapy at the trauma clinic. My psychologist was pushing me to accept a referral to a different clinic that specialises in personality disorders but I knew this wasn’t right for me. That same session ended with her wanting to prove that I didn’t have DID by setting up a circle of chairs and getting each insider to sit on a different chair. I can’t even describe just how patronising that was but it was the last straw for me. My psychologist cancelled sessions at the last minute all the time but I knew there was going to be a month’s gap between sessions and I decided that I needed to find treatment outside of the NHS. Thankfully, my GP spoke to this psychologist and convinced her to help with the referral to a specialist clinic, where I ended up being formally diagnosed with DID (it took months and months before I could get an appointment to be diagnosed though). I used the month’s gap to research and find a therapist who was trauma and dissociation informed, and we’re still seeing her today.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I really don’t think I could limit it to one thing!
– I’m human, as are my insiders. We have thoughts and feelings that can be hurt. Please don’t forget this.
– We’re not dangerous just because we’re a bit different to some other people. We’ve been through some really bad things but that doesn’t make us more likely to hurt others. Actually we wouldn’t wish any harm on anyone, ever. Please don’t be scared of us.
– We aren’t being untruthful about the extent of the abuse we’ve experienced. It may seem unbelievable and incomprehensible to you but why would we make up this stuff? Extreme, prolonged abuse can and does happen.
– DID isn’t rare. When 1-3% of the population have it, that’s a whole load of people. I suspect you’ve met someone with DID already and just didn’t know it.
– We’re not faking the dissociation or doing this to get attention. It’s actually a creative and clever way to cope with horrific trauma. Oh, and we don’t really like attention anyway.
– DID doesn’t often have a really dramatic presentation. There are differences between myself and my insiders but they are more subtle. It takes a lot for any of us to trust another person, so it will take a while before you’d get to meet any insiders. We’re not trying to be rude or disrespectful.
– Please understand that it is hard to trust when we’ve had our trust broken time and time again.
– We’re not crazy; we’re traumatised. There is a very big difference.
Sorry about the length, Healing. This was really hard to write and there have been tears but we think what you’re doing is so important. Healthcare is different here in the UK and there’s such a lack of understanding of dissociative disorders. Generally, the DSM isn’t accepted and used over here, and don’t get me started on the inadequacies of the ICD (International Classification of Diseases). As hard as it was for us to answer these questions, you have our support. Thank you for wanting to improve understanding of DID.
Hi Healing,
I/we think the project you are doing is wonderful, and we want to support it. We have been trying to support projects like yours whenever we see them online, and answer people’s questions about DID, because you’re right, there is far too little education about it, especially in the mental health professional community, and that needs to change.
So, without further ado, here are my answers to your questions:
1. Yes, several, on an ongoing basis for about nine years of my life.
2. A psychologist, a psychiatrist, and a nurse practitioner who was our main therapist while we were seeing the psychiatrist.
3. These three professionals refused to diagnose us as DID, even though there were at least two, and eventually four separate identities during this time period who talked to them on a regular basis and had separate names, likes and dislikes, etc. They told us that the reason they didn’t think we had DID (which they were still referring to as multiple personality disorder even though the name had changed by then), was because we were able to share external memories. We didn’t have much, if any, issues with large chunks of missing time. Yes, the official definition of DID includes amnesia as one of the criteria, but to say that that always means large blackouts of memory is a misconception based on a misinterpretation of that definition.
Furthermore, they also had a misconception that we were delusions created by an overactive imagination, and that the only way for us to heal was to merge back into one self, and/or just “get rid of” all but the “original” self (which they considered to be the one with the same name/body image of our physical body, which made him the only “real” one in their eyes.)
4. I, the one writing this, am not the one who they considered to be the “real” one. I am a female who was (according to them) a “delusion” that was created by him, the “real” one. Because of that, I felt miserably depressed, because I was being told that I was less than human. I felt guilty just for existing, because according to them, my existence was keeping HIM from leading a “normal” life (whatever that is…) I wanted to make myself disappear or merge with him, but at the same time, I wanted to be more real. Because of all these conflicting emotions, which were directly the result of what my therapists were telling me, I became so depressed and confused that I started cutting myself. They weren’t suicidal cuts. I didn’t want to end my life, partly because I felt I didn’t have the right to end his as well. But I felt that making small cuts on my fingers made me feel more real, more like an actual human being. Of course, I didn’t realize that that’s why I was doing it until after I had been admitted to a behavioral health clinic for a week and a half. Before that, all I knew for sure is that I was a wreck emotionally, and that I had a compulsion to cut myself that I couldn’t stop, and I felt like that made me a bad person. That all could have been prevented if only my therapists had actually understood what DID was, how it works, and how to properly treat it.
5. First of all, we are real. Every single part/alter in our system is just as real as the next one. Just because we are not one whole person like the majority of people in the world, that doesn’t make us any less real. We have likes and dislikes, hopes and fears, dreams and aspirations, and emotions, just like anyone else, and it hurts us tremendously when you call us “delusions” or “imaginary friends” or other such insults. It’s emotional abuse, plain and simple, and it needs to stop.
Secondly, merging back into one whole person is not the only way to treat DID, and personally, we’re not even sure if it’s possible. In our experience, every time we thought we had accomplished that, we eventually realized that we were still separate, and then we would have to try another tactic. Fortunately, we finally, after nine long years of being misdiagnosed, got a proper diagnosis of DID from a therapist who had been specializing in DID for about 15-20 years by that point. He told us that we didn’t have to merge to experience healing. We just needed to learn to appreciate each other, love each other, and cooperate as a team to help each other heal from our trauma and learn to live a healthy life. Using his methods, we made more real progress in healing in the first few months than we had with all of our previous therapists in the last nine years combined.
Finally, I would like to say that the criteria of “amnesia” doesn’t always have to mean large chunks of missing time. Every DID system experiences it in their own unique way, and for many of us, it can be more subtle. For instance, we can remember what happened when another alter was “out”, but the memory is fuzzy, like the memory of a dream. Or perhaps we temporarily can’t remember a certain time period in the past, but when we do remember it again later, we chalk it up to “forgetfulness” and move on. Also, we can have amnesia of internal memories, that is, events that happened in the internal landscape of our mind. In our own system, that’s how we kept the secret of our DID from ourselves for many years of our life, by forgetting who we were on the inside when we came out, so that we could keep up the illusion that we were all one person, when in fact we were not.
I sincerely hope that my answers will help someone to better understand DID. Thank you for inviting me to participate in this project, I really appreciate any chance I can get to educate people about DID.
Gratefully,
Leyna
Leyna, This is so well written. Thank you for writing out your thoughts. We appreciate them, and you.
Thank you for the compliment! We appreciate you too!
Leyna
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Psychologist, Therapist and Behavioral Health Facility
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
Psychologist- Perhaps misconception
Therapist- Misconception
Behavioral Health Facility- Seemed to lump DID under the heading of PTSD and treated it as such.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I was hospitalized because for suicidal plans brought on by flashbacks of new information.
In the Behavioral Health Facility (BHF) my diagnosis of DID was simplified to PTSD. I was immediately medicated for PTSD/depression with an SNRI that I explained caused me anxiety. I was told the anti-depressant I had previously taken effectively for years wasn’t used for PTSD so could not be prescribed. I was treated for the preexisting anxiety with a blood pressure medication and denied the occasional very low dose of Ativan that had worked for me prior to hospitalization.
Often the processing groups in the BHF were a masculine facilitator, 5 to 7 masculine patients and 2 feminine patients including me.
My last day at the BHF I was the only feminine patient in the processing group. A horrific flashback was triggered. I shared it was about a similar scenario… the facilitator left me in the fetal position in the chair and finished the group session. I was finally given Ativan and left alone in the room, I eventually wandered to my room and bed, it was dark outside so had been hours. I could barely stand my muscles were so sore from being clenched so long. I was discharged the next morning.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
I don’t even know what to tell them. They didn’t say anything directly about DID. It was what was UNSAID that was most disturbing in my hospitalization.
The one time I saw a doctor his eyes glazed when I tried to explain DID was more than PTSD.
I guess I would say that DID and PTSD are comorbid but certainly different.
While a body can present with ONLY PTSD it is foolish to dismiss the diagnosis of DID in addition to PTSD.
I wonder if that doctor believed DID wasn’t possible due to our being selves aware.
Thank you, Healing, for amplifying our voices.
Thank you, Kathy, for allowing space on your large international platform for collecting our voices.
1). Have you ever had a negative experience from the mental health community because you have DID?
Yes
2). If yes, what type of mental health community did you receive this negative experience from (i.e. psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
Hospital
3). Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
I don’t know if it was a stigma, misconception or myth they perceived about having DID or not. I don’t want to assume their intentions. I just know that it made me feel poorly about myself in the moment.
4).Please describe one negative experience which was based on a stigma, misconception or myth you received from the mental health community which you found hurtful and/or not helpful.
I had a hospital visit back in February of 2018. I was experiencing a lot of dissociation and suicidal ideation. I reached out to my friend and she brought me to the hospital. At the hospital, I felt like I was treated appropriately at first. I was in the general emergency department area. I have been to the hospital before when I was struggling with suicidal ideation and after attempting suicide. In my past experiences, when I did not have a diagnosis of a Dissociative Identity Disorder (DID), they kept me in the regular emergency department section until I transferred to the psych ward or was sent home. However, on this occasion, while describing the thoughts that were occurring for me, I revealed that I have DID. Within minutes I was taken to a special emergency department area. In this area, everything was bolted to the walls or floor. Never before in my visits to the hospital did they think such a setting was necessary while waiting for an open bed. But, this time was different. I felt like people thought of me as a danger to others.
5).If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
Having DID does not mean that I am a danger to others. I was not actively trying to hurt myself and gave no indication of wanting to hurt others. Please treat me like you did before when I was not diagnosed with DID. Most of my experiences within the mental health community since being diagnosed wit DID have been positive. I have worked with some of the most gifted and dedicated specialists. I know that hospitals see me at my worst, but know that I can present as an average person on my good days. I ebb and flow just like everyone. I just have a different way of coping with and perceiving the world. Sometimes my diagnosis leads to some really difficult days, but for the most part I am someone who is able to contribute much to the world when I am given the appropriate supports. I have DID. I also have a career as a special education coordinator, I have friends, I have an interest in meditation, a love for nature….I have so much more than just a diagnosis.
1) Have you ever had a negative experience from the mental health community because you have DID? Yes, I am amazed at the number of clinicians who do not “believe” in DID.
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)? I have had negative experiences with all types of practitioners. That said I have had good experiences with all types as well.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID? As a therapist myself, we spent less than 5 minutes on DID in my entire training program, so I think a lot of it comes from lack of education. I also think the media portrays people with DID as individuals who are violent and unable to function to any extent, which perpetuates the belief that if you are able to function to some extent that you can’t be DID.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful. It took a long time for me to get an accurate diagnosis because many of the clinicians I saw were hesitant to to diagnose DID.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be? That people with DID can and do recover if given the proper diagnosis and treatment. When you decide to withhold that for whatever reason, you delay our recoveries and risk our lives.
Don’t know if any of this will help as some of this was before I knew I had a DID situation yet was exhibiting DID symptoms..I was hoping someone could figure out what was “wrong” with me……it was before I found my current therapist. The situation described below happened long ago but affected my life and my ability to trust “help” for a long time……..
1. Yes – it was before I had DID diagnosis but had symptoms
2. Counselor, mental health facility, hospital, police – but all before DID diagnosis
3. Don’t think so…even though they were professionals, I don’t think they knew any more about what was happening to me than I did
4. At college (1976) I suddenly got hit with intense suicidal despair and wrote “I want to die” on a final exam question, walked out and ended up several hours away in another state with only a very foggy awareness of how I got there….The school required me to see a counselor or they would “kick me out” even though I was SO close to graduating ….After a couple sessions with an arranged county mental health counselor and filling out the required questionnaire on “My Relationship with Family Members”, he determined that – other than fear and rage – I had almost no emotional connection to my father – and that I had been date raped 3 years earlier with NO counseling afterwards. He stated that I looked like a “scared little fawn” and I needed to “toughen up” and learn to “stand up for myself”….i.e. “to fight”. He stated that during our next session he “was going to back me into a corner acting like he was going to rape me” and he wanted me to “start fighting him”………
I became terrified of him and terrified that one of two things would happen in that next session – (1). I would go into “froze mode” and collapse – not knowing what he would do to me……OR (2.) Rage would kick in and I would possibly kill him……I knew of no middle ground………
In spite of my great fear of getting kicked out of school, I never went back to him ….each day afraid that he would report to the school that I wasn’t complying ….Nothing else was said and shortly after that I graduated “cum laude” making the Dean’s list every semester. But it was many years before I ever tried walking through another counselor’s door……..
5. Be aware of symptoms of DID and similar situations…..you may come across those who exhibit the symptoms but just aren’t yet aware of what is happening to them…..intense despair, suicidal ideations, rage with no awareness of the source, sudden changes in perspective, and disconnected “froze modes” are not things you can “skip over” and then make someone “toughen up”…….
We are not “misfits”…..we are hurting people who have been emotionally and physically overwhelmed to an unbearable degree and have survived the only way we knew how……..
I tried answer on phone computer broke. Don’t know if went through but have question. Will we get to see your work?
Hi Deborah!
Right now, I’ve been going through 21 peer-reviewed articles. I”m down to 6 🙂 What everyone has been contributing is helping me sort through what to pull out of those articles so I can put on a literature research poster I’m doing for the upcoming ACA conference in my state. Once the conference is over, I will be communicating with Kathy and giving an update about the process. If I’m not mistaken, I believe an update will be given so everyone can know how things turned out because after all, each of you has helped me. I honestly could not have done this without everyone here.
Healing
Healing here!
I want to say a big THANK YOU to everyone for your input! I can’t tell you how vital it was. I hope each of you realizes that you are not alone. I know this helped me realize that yes, what I experienced and how I feel is not an isolated case.
I also want to thank this community for sharing your experiences. I know writing about your experiences was difficult but I hope each of you found writing to be cathartic. One thing I realized and which I will be mindful of in the future, is many of you could not just give one experience. I took full note of that and realized how much our voices need to be heard.
Just wanted to give a quick update! The poster is now finished and in the process of being printed. It will be 3′ x 4′. There will be approximately 2,000 mental health professionals at this conference. My advisor who had to give the final approval before it could be printed loved the poster.
I decided to do a little test run with some colleagues and showed them the draft of the poster. I had no idea either where they stood on their belief of DID, or if they believed in it just how much they knew about DID. Let me tell you all, the feedback I received from my colleagues on the poster was very positive and huge! I’ve had a few tell me I need to do the content session at the next conference, which is where I would speak over several days during an assigned time slot about the information from the poster.
I am very excited about this conference, and that more awareness can be brought to MH professionals. I anticipate positive changes going forward because of being able to bring awareness.
This is Exciting news I hope that a picture of your poster will be a published here for all of us to see.
1) Have you ever had a negative experience from the mental health community because you have DID?
Yes
2) If yes, what type of mental health community did you receive this negative experience from (i.e, psychiatrist, psychologist, therapist/counselor, mental health facility, hospital, etc.)?
It was from a therapist/counselor.
3) Did you think this negative experience from the mental health community was based on a stigma, misconception, or myth they perceived about having DID?
Yes I believe that they believed in misconceptions and myths.
4) Please describe one negative experience which was based on a stigma, misconception, or myth you received from the mental health community which you found hurtful and/or not helpful.
I was told no you do not have d.i.d. by a student learning to be a therapist. They said that the disorder is not real and that I’m just making it up to get attention. It made me fear going to therapy and I quit therapy for awhile.
5) If you could tell the mental health community one thing to change the stigma, misconception, or myth you were told about DID, what would it be?
That D.I.D does exist. We didnt choose this. It happened due to trauma at a young age. It helped us survive that trauma and the alters are helpers.
I have a book about DID I’m preparing to publish that covers all, and I mean all, the bases when it comes to DID. I’m hoping people will buy them and give them to their providers. In the book, there is a section about myths and misconceptions plus tons of information about any topic related to DID you can think of. I’m pubishing it withint the next few days and it will be available on Amazon after that.
We MUST stand up for ourselves and advocate for change. Shirley