The work of crafting the official diagnosis for Complex PTSD by the World Health Organization for the 11th International Classification of Diseases has finally been completed (see https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/585833559?readOnly=true&action=ContentEnhancementProposal&stableProposalGroupId=904bb7e6-14cc-462c-b31f-79ca70b8f628¬ifsystem) (If you can't get into the link you may have to make an account.) To the best of my knowledge it is supposed to be published in 2018 and this is what what they are going with:
Complex post-traumatic stress disorder (Complex PTSD) is a disorder that may develop following exposure to an event or series of events of an extremely threatening or horrific nature, most commonly prolonged or repetitive events from which escape is difficult or impossible (e.g., torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse). The disorder is characterized by the core symptoms of PTSD (including brain and HPA Axis alterations); that is, all diagnostic requirements for PTSD have been met at some point during the course of the disorder. In addition, Complex PTSD is characterized by 1) severe and pervasive problems in affect regulation; 2) persistent beliefs about oneself as diminished, defeated or worthless, accompanied by deep and pervasive feelings of shame, guilt or failure related to the traumatic event; and 3) persistent difficulties in sustaining relationships and in feeling close to others. The disturbance causes significant impairment in personal, family, social, educational, occupational or other important areas of functioning.
So the definition we came up with was rejected but at least we entered into the conversation and made our voice heard. Hopefully by continuing to reach out we will help organizations and professionals see and better understand the nuances of this psychological injury.
this is better than what it was. thanks, kizzie, for all your work on this. yay, WHO.
I had an email notification from WHO about the definition of COmplex PTSD and lo and behold the working group is asking for comments :cheer:
So I posted this:
"Emotional" abuse should be included in this definition as this form of abuse is prevalent and a major cause of what leads to those "persistent beliefs about oneself as diminished, defeated or worthless" identified as a symptom. The latter half of the same sentence is somewhat of a misnomer (pervasive feelings of shame, guilt or failure related to the traumatic event). It is the repeated or ongoing nature of trauma rather than a traumatic event that is so common in the development of Complex PTSD. This also makes the word "post" somewhat misleading. As in my previous submission it is also important to point out that many of us who have Complex PTSD find the word "disorder" quite stigmatizing and prefer the word "injury."
It may not get anything except the "Rejected" button again, but at least we are part of the conversation ;D
Yay, Kizzie... it's great that OOTS is being included in the WHO's conversation about the definition of CPTSD. Feels like we are part of something bigger, and have influence. :cheer:
I clicked on the link you provided and found myself directed to a page to register with a variety of options on how I would like to participate and details of the rules and regulations involved when you sign up. I was too tired to go through it all, and decided I needed more time to think about it. So I haven't signed up.
Quote from: Fen Starshimmer on February 25, 2018, 09:50:33 PM
Yay, Kizzie... it's great that OOTS is being included in the WHO's conversation about the definition of CPTSD.
I echo that! And it's thanks to Kizzie's work that we're being included. :applause: :cheer: Kizzie
Thank you for advocating for us Kizzie. It is great that we are part of this conversation :cheer:
I wasn't sure if anyone could see the proposals submitted and then follow-on comments without an account. OK, so you have to have an acct, oh well. I'm following it though Fen (and everyone) and I'll post any updates if/when anything interesting happens.
Many thanks, Kizzie, for your extreme dedication and persistence as we struggle to be understood.
It's so good that you're working to give them input, Kizzie! I really hope emotional abuse will be part of their definition, as that's why I've got cPTSD. I now realise I feel very vulnerable around having problems that can be written off as nothing or forced into a mold that doesn't fit, like it's a shortcoming of mine.
Quote from: PeTe on March 01, 2018, 03:31:45 PM
I really hope emotional abuse will be part of their definition, as that's why I've got cPTSD. I now realise I feel very vulnerable around having problems that can be written off as nothing or forced into a mold that doesn't fit, like it's a shortcoming of mine.
:yeahthat: Even though in my case there was some CSA and CPA the emotional abuse was the worst. And anyway CSA and CPA of types that can be written off as easily as emotional abuse. It's terrible when docs and Ts persistently say it wasn't bad enough when it plainly was bad enough!
Quote from: Blueberry on March 01, 2018, 06:10:43 PM
:yeahthat: Even though in my case there was some CSA and CPA the emotional abuse was the worst. And anyway CSA and CPA of types that can be written off as easily as emotional abuse. It's terrible when docs and Ts persistently say it wasn't bad enough when it plainly was bad enough!
Most definitely. We're not here for the fun of it, it's because it was that bad. I haven't been living the high life the last six months, I'm on a sick leave. Even if emotional abuse is included in the description, though, we'll still have to face a multitude of others who choose to believe us or not. I'm really glad I have this forum :grouphug:
I too, really hope they include emotional abuse in the description. Although I experienced "enough" CSA, and CPA the emotional abuse took such a gigantic toll. I feel like it is really important to recognize that form of abuser formally just like any other. It is great that this place exists because it is such a widely accept thing here
It surprises me that it wasn't included. As many of us know only too well here at OOTS, Complex PTSD can develop from emotional abuse/neglect alone. Perhaps it's that the World Health Organization is very focused on major political, economic and social crises around the world so emotional abuse such as many of us have experienced in our homes/workplaces/relationships/religions/etc may be too nuanced for them to take into account. :Idunno:
I'd like to think if the American Psychological Association ever gets around to including it in the DSM, it will cover emotional abuse because the organization is focused on psychological diagnoses.
I finally got round to registering an account with the WHO and have been able to see for myself how CPTSD is being discussed and Kizzie's excellent contribution.
I have done the equivalent of a Facebook 'Like' to Kizzie's recommendation of including emotional abuse in the definition. If other people feel strongly about this issue and would like the WHO to change its stance on CPTSD so that it includes emotional abuse, you could do likewise, register and support Kizzie's statement. It might help to show there is widespread support for its inclusion, even if they do appear to have made their minds up at the moment. I can also provide a comment of my own if I wish. I am considering it. Need to get the words right for WHO.
Kizzie said:
QuoteIt surprises me that it wasn't included. As many of us know only too well here at OOTS, Complex PTSD can develop from emotional abuse/neglect alone. Perhaps it's that the World Health Organization is very focused on major political, economic and social crises around the world so emotional abuse such as many of us have experienced in our homes/workplaces/relationships/religions/etc may be too nuanced for them to take into account. :Idunno:
It's alarming to see that emotional trauma wasn't included, given the prevalence of it as shown here at OOTS and through my own experience and reading of recommended texts. It suggests that the majority of people entering into the discussion about the definition of CPTSD have not done their research thoroughly, and are/were ill-equipped for the task. It's a shame that CPTSD experts like Pete Walker, Judith Herman, Bessel Van Der Kolk and others, were not invited to take lead roles in such an important assessment, a decision that could, and probably will, have heavy repercussions for survivors worldwide. People will continue to get misdiagnosed, stigmatised and marginalised as they suffer the devastating longterm effects of emotional abuse and neglect in childhood. The medicating of symptoms will continue apace, while they will be guided onto CBT courses (for which they should be grateful). :fallingbricks:
Quote from: Kizzie on February 25, 2018, 05:26:58 PM
I had an email notification from WHO about the definition of COmplex PTSD and lo and behold the working group is asking for comments :cheer:
So I posted this:
"Emotional" abuse should be included in this definition as this form of abuse is prevalent and a major cause of what leads to those "persistent beliefs about oneself as diminished, defeated or worthless" identified as a symptom. The latter half of the same sentence is somewhat of a misnomer (pervasive feelings of shame, guilt or failure related to the traumatic event). It is the repeated or ongoing nature of trauma rather than a traumatic event that is so common in the development of Complex PTSD. This also makes the word "post" somewhat misleading. As in my previous submission it is also important to point out that many of us who have Complex PTSD find the word "disorder" quite stigmatizing and prefer the word "injury."
It may not get anything except the "Rejected" button again, but at least we are part of the conversation ;D
I noticed the lack of a mention of emotional abuse immediatelly. Didn't these guys do their homework? Pete Walker (I guess he's book is one of the largest on C-PTSD) cleary states that emotional abuse (in the form of abandonment) is what's at the core of the wounding of trauma. He mentions children who are physically abused and get trauma, but don't get C-PTSD because they aren't emotionally abandoned by at least one care-taker.
Why are people so incompetent? Everyone here has been waiting so long for an official diagnosis and first thing they do is screw up the fundamentals.
Goes to show how deep their beliefs go, I guess. And that a lot of psychiatry is just that: a belief system, sometimes not much more accurate than that.
If I learned emotional abuse didn't exist I'd have a very hard time changing my mind too, I suppose? But it's difficult for people who go through emotional abuse to be emotionally hurt by the psychiatrists they go to for help.
Psychological abuse of, say, prisoners of war is taken seriously. So an awareness of what "breaking" a person implies and the symptoms it leads to is already out there - but not when the same techniques are used on say, helpless, trusting, defenseless children by their parents? :Idunno:
Not only are you left speechless by trauma, but there's no evidence of the crime unless you know what you're looking for, so you can't even say "This Is Abuse" to society, even that is left in the shadows. The potential for re-traumatization is huge.
I was hoping they'd do a better job. Sigh. Dance of folly :blink:
I don't think it's necessarily incompetence. If they want to make a new diagnosis, it might be more important to be able to agree on a first definition, and then later revise it, instead of the process potentially stalling. It might be very competent bureaucracy, and it might all be done with the best of intent for everyone who's suffering from it. From an outside perspective, I can see that the less tangible cause for the problems, the harder it is to accept it and agree on including it. Violence - easy to agree upon, the context and tone something is said in - up for discussion. (PS! I'm writing this as someone who's experienced emotional abuse.)
- TW - emotional abuse -
Quote from: PeTe on March 03, 2018, 02:31:48 PM
Violence - easy to agree upon, the context and tone something is said in - up for discussion. (PS! I'm writing this as someone who's experienced emotional abuse.)
You have a point there, it makes sense. May have been done as a skillful way to get the diagnosis through its first hurdle.
I hope so, it's better than the alternative.
And, I think emotional abuse
is violence.
I think it's not always open to interpretation, not always hidden. Sadly, it can be direct and blatant too. Maybe our big brains and complex language abilities enabled new abuse in ways that wouldn't have worked on other animals :'( and abusive people have happily learned to perfect those new techniques.
You may not really hurt a kitten that badly if you verbally threatened it you'd kill it, but you'd be violent if you did that to a child or to someone who can't escape your influence.
(I won't give some of the creepiest examples I went through because they're harsh and I don't want to put triggering things here, but... they're violent, to put it mildly.)
p.s. just occurred to me the example above may be triggering in its own right, I'll add a TW above just to be on the safe side.
The 'good' news is that although emotional abuse as a cause wasn't directly identified, it can be inferred from our symptoms. Medical/mental health professionals in first world countries at least should be able to look beyond the horrific political/economic/social trauma emphasized in the WHO definition to the interpersonal trauma including emotional abuse alone, which leads to "persistent beliefs about oneself as diminished, defeated or worthless" and "pervasive feelings of shame, guilt or failure."
Now finally, they will have an "official" diagnostic category to put us in when we present with these symptoms, and that qualifies us for treatment and services. Those of us who were emotionally abused may still have to educate ("Look doc, 2 + 2 really does = 4") and even push somewhat, but hopefully it won't be as much of a battle as it has been in the past.
Quote from: Kizzie on March 03, 2018, 05:13:02 PM
The 'good' news is that although emotional abuse as a cause wasn't directly identified, it can be inferred from our symptoms.
Just what I was thinking too when I first read the news about the new diagnosis :yes: I was thinking it remains to be seen whether psychiatrists talking to someone who presents with all the symptoms of cptsd - but reports neglect or emotional abuse - will offer the correct diagnosis and help regardless.
If they do that in practice, that will be excellent. It'll be sure to relieve some suffering and that's
such good news.
Thanks Kizzie, my personal frustration about there being no emotional abuse and what it could mean is ... well, it's :pissed: :no: but at the same time you're right. If people get help then the rest is maybe secondary. Even if just one person gets help thanks to this it's very good news.
Quote from: Kizzie on March 03, 2018, 05:13:02 PM
The 'good' news is that although emotional abuse as a cause wasn't directly identified, it can be inferred from our symptoms. Medical/mental health professionals in first world countries at least should be able to look beyond the horrific political/economic/social trauma emphasized in the WHO definition to the interpersonal trauma including emotional abuse alone, which leads to "persistent beliefs about oneself as diminished, defeated or worthless" and "pervasive feelings of shame, guilt or failure."
Thanks for pointing this out!
When I read this type of definition, I'm still looking at it through the non-benevolent glasses of FOO and other disbelievers who'd say "yeah but there was no physical abuse. How could Blueberry possibly think she has this diagnosis?!?". So then I feel disappointed that there's no proof :doh: Of course
they'll never believe it anyway .
QuoteWhen I read this type of definition, I'm still looking at it through the non-benevolent glasses of FOO and other disbelievers who'd say "yeah but there was no physical abuse. How could Blueberry possibly think she has this diagnosis?!?"
I hear you BB :yes: That's why I think it took me forty years to understand and accept I was abused. I've always felt I would not have spent decades believing
I was crazy if my FOO had physically/sexually abused me. Although I would still have CPTSD, at least I would have known more clearly earlier on something was done
to me rather than think I was the source of my own misery.
Hi kizzie, when does this cptsd diagnoses actually get published on the dsm? I can't be diagnosed with it officially until it is actually published, at the moment I have PTSD even though my psychologist says it's clearly complex! So frustrating here in the uk. Makes no sense.
Ha, actually Kizzie there was CPA and CSA in my case, but more minor than the emotional, I think. FOO certainly wouldn't recognise it as any kind of abuse.
Sorry you spent decades thinking you were crazy. You don't strike me as crazy. Very sane, in fact. :hug: Glad to know you.
If you can still comment on WHO's work, here's something you can use to validate the importance of emotional abuse in developing cPTSD. See appendix B for typical scores on traumatic experiences leading to DESNOS (a different proposed name for cPTSD, as I undestand it), where patiens typically score high on emotional abuse: http://www.traumacenter.org/initiatives/Polyvictimization_Articles/DESNOS_II.pdf
Quote from: Blueberry on March 06, 2018, 10:25:42 PM
Sorry you spent decades thinking you were crazy. You don't strike me as crazy. Very sane, in fact. :hug: Glad to know you.
Kizzie,
I'm so sorry too, it sounds so familiar because I feel the same, and yet all I know of you shows me the absolute opposite about you, so it caught me by confused surprise.
It always seems to shock me whenever anyone here sees themselves this way, it hurts deeply to imagine you felt this way about yourself.
(Well, except me thinking about myself in those terms. That continues to make perfect sense to me <- emotional abuse at its best! I hope it gets the credit it deserves one day. The misery it causes is... I have no words for it.)
Blueberry,
My guess is my FOO as well as yours might not even recognize a 2000 lb dinosaur if it stared them straight in the face. :blink:
Kizzie said:
QuoteI hear you BB :yes: That's why I think it took me forty years to understand and accept I was abused. I've always felt I would not have spent decades believing I was crazy if my FOO had physically/sexually abused me. Although I would still have CPTSD, at least I would have known more clearly earlier on something was done to me rather than think I was the source of my own misery.
It took me the same number of years Kizzie, around my fortieth birthday, too, to realise that all this time I had been suffering from 'PTSD', discovered only by chance on a website written by a survivor whom I identified with. I had discarded the physical abuse as normal, and my memories of CSA were only tiny fragments, showing up mainly in triggers and EFs and excruciating re-enactments and nightmares. The emotional abuse by my FOO made it all much worse, infinitely more damaging to mind, body and spirit, as I became totally and utterly confused about who I was. It was as if they had turned me against my (dissociated) self, and I left home a lost soul.
PeTe - Thank you for providing the link to the DESNOS paper, authored by Bessel Van Der Kolk among other luminaries. Having conducted a little background research into the WHO, I am beginning to have doubts as to whether it is worth my time commenting on their decision on the definition of CPTSD. In a matter of a few minutes, I found examples of poor decision-making by this organisation, policies that fly in the face of solid science, that go against the public interest. I wonder how much influence the WHO wields in the development of assessment criteria for CPTSD worldwide? Hopefully, less than it would like to believe. I hope individual practitioners/therapists/psychiatrists will do their own research and come to their own, more enlightened conclusions about the causes of CPTSD.
Quote from: ah on March 07, 2018, 03:51:13 PM
Blueberry,
My guess is my FOO as well as yours might not even recognize a 2000 lb dinosaur if it stared them straight in the face. :blink:
ah, the content of your remark is sad, frustrating, hurtful for both of us I imagine, but the way you express it made me chuckle.
Eyesoblue - The WHO ICD-11 is supposed to be published in June 2018. See http://www.who.int/classifications/icd/revision/betaexpectations/en/. As for inclusion in the next edition of the DSM - :Idunno:. I like to think if Complex PTSD is the ICD-11 this will prompt the APA to consider it for the next edition of their DSM (no idea when that will be) Plus there is a steadily growing body of empirical research to support the diagnosis so I think there is hope.
PeTe - Thank you for the link, I will look into it ;)
Fen - To my knowledge the WHO ICD is used widely in many countries other than North America so I think it is an important step forward. MEntal health professionals are already diagnosing people as having Complex PTSD, this just gives them and others some ammo for insurance, treatment, services, etc. There does seem to be a bit of a story behind it getting into the ICD but not the DSM. I've been following researchers/clinicians who have been working to gather empirical evidence to establish the validity of the diagnosis. If you check out the OOTS Research page (http://www.outofthestorm.website/academic-articles/) you can see efforts by this 'for' side (Bryant, Cloitre, Herman, Hyland, Elkit, etc). However, there is also an 'opposing' group headed up by Resick. As I understand it the evidence was not compelling enough for the APA back when the DSM was being updated and Resick and colleagues were quite outspoken about it not being a valid and separate diagnosis from PTSD. As such, it was not included. Since then, however, the 'for' group has been collecting empirical data and working to get it into the WHO ICD. And their efforts have paid off as at least one of two main diagnostic manuals used has included Complex PTSD. It almost has the makings of a TV mini series. I've also seen little comments here and there iabout the cost to American health care system if Complex PTSD were ever to become an official diagnosis - so there's also a little bit of good old conspiracy theory thrown in for good measure. (I.e., If we approve it, we will then have to pay for it so let's send in Resick to shut it down) :Idunno:
Tks to those who commented about my believing I was crazy - it's always such a warm feeling to be validated. I wish none of us were here for the reason we are, but I'm so grateful to have this tribe. Bring it in for a great big :grouphug:
Grouphugs are way too rare outside this place :grouphug:
:yes: so one more for good measure :grouphug:
;D