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Messages - Kizzie

#4906
 I've written to the WHO and made a suggestion for changing the name and definition of CPTSD based on our discussions and polls.  Understandably they are somewhat reluctant to change the name given it is widely used, but it is worth letting them know on the record we have some concerns with the diagnosis.  Here's what has transpired thus far (I will add to this if/when there is anything other communication).

Proposal to the World Health Organization International
Classification  of Diseases Edition 11 (WHO ICD-11)

13 Dec - Proposed Name and Definition Submitted by Kizzie

Cumulative Traumatic Stress Injury (CTSI) describes enduring personality changes that may develop in childhood or adulthood following exposure to a series of past or continuing 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). This psychological injury is characterized by the core symptoms of PTSD; that is, a persistent sense of threat, re-experiencing the trauma, and avoidance of traumatic reminders. CTSI is also characterized by three additional symptoms including: 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.

Dec 15 - Response by Geoffrey Reed on behalf of Mental Health TAG

The primary feature of this proposal is to change the name of the category to add a characterization of it as a psychological injury and to make additional comments about treatment. Although we understand the intention of the name change, this disorder does not always rise our of cumulative events. Also, the current name has been widely used, including in the scientific literature, where there has been much discussion about this entity. See from earlier this year: Brewin, C. R., Cloitre, M., Hyland, P., Shevlin, M., Maercker, A., Bryant, R. A., Humayun, A., Jones, L. M. Kagee, A., Rousseau, C., Somasundaram, D., Suzuki, Y., Wessely, S., van Ommeren, M., & Reed, G. M. (2017). A review of current evidence regarding the ICD-11 proposals for diagnosing PTSD and complex PTSD. Clinical Psychology Review, 58, 1-15. doi: 10.1016/j.cpr.2017.09.001.
The characterization of the disorder as a psychological injury is unnecessary because it is redundant with the concept of the disorder itself.

Dec 22 - My Response

Thank you for your thoughts on my edits to the proposed section in the ICD-11 about CPTSD. My proposal was based on discussions by members of a forum (Out of the Storm), which currently has 4,500+ registrants from all over the world who have CPTSD. While we are delighted that the term will finally become an official and unique diagnosis in this publication, we also feel strongly that this is an opportune time to begin to use a name that clearly conveys the nature of what we suffer from.
For the vast majority of us, psychological trauma has been ongoing/repeated (i.e., cumulative). In fact, there is not a single instance I can recall in which the member's symptoms developed otherwise. In addition, for the majority of us the symptoms are not simply a reaction to something in the past, they are a reaction to both past and ongoing trauma, either because the perpetrators are still in our lives and/or we have recreated the trauma with other people in adulthood. Thus, we do not view the word post as an accurate description of what we are dealing with.

Of utmost importance is the word disorder which for the majority of us is pathologizing and stigmatizing. It emphasizes the symptoms we have rather than the fact that we developed them because of being traumatized by external events/people. For us, the word injury better captures the notion that our symptoms are reactions to abnormal events rather than a character defect (which is an attitude many of us experience). Injury is just so much less stigmatizing and validates for us and others that we are not weak or defective. There are numerous articles and current efforts to depathologize the language surrounding trauma. One example: Rosenthal, M., Reinhardt, K. & Birrell, P. (2016) Guest editorial: Deconstructing disorder: An ordered reaction to a disordered environment, Journal of Trauma & Dissociation, 17(2), 131-137.

#4907
Announcements / Re: Guidelines reminder - Posts
December 21, 2017, 08:18:41 PM
In this case there was a member who was over stepping the guidelines and as a team we made the decision to ban them after several warnings and no change to their behaviour. 

So this is also an opportunity to let the community know we will do our best to keep the community safe and discussions respectful but that we need your help to do so. 

Thanks everyone  :grouphug:
#4908
Employment / Re: Quitting job - struggle with IC
December 17, 2017, 02:54:42 AM
Cocido, I am big on respecting my needs and where I am in the moment.  If you are not OK with saying goodbye at all or directly (you could do something a little less anxiety provoking like a card or email?), that's perfectly OK imo.  FWIW taking "should" out of things often opens up space inside me and quiets my ICritic.  Perhaps allow yourself to do this type of thing when you are ready and accept that it is uncomfortable for a reason?
#4909
My copy is on its way Anna and I'm looking forward to reading it.  Hopefully we'll get some good discussion going after a few of us have read it.   :yes: 

Kizzie
#4910
Added it Blanca - tks!
#4911
Books & Articles / A New Fiction by One of Our Very Own!
December 13, 2017, 07:43:22 PM
Anna L. Bragga has been a regular member at OOTS for over a year.  We have agreed not reveal to her forum name so that she may continue to post anonymously here at OOTS.  Her first published book is a fiction titled "Fractured" which revolves around a character named Deborah who struggles to make a better future for herself in the face of pain and lies surrounding her past, homelessness, and alcoholism. It is when Deborah realizes that "only the truth can give her peace and justice" that she begins to find her way.  Anna is hoping that her book will provide insight and a springboard to discussions about the disorder.  If you have any questions or comments please feel free to post them in this thread.

For more information about Anna and her book, click here

To order the book, please click here. 

Congratulations Anna!
#4912
Checking Out / Gone for a Bit
December 02, 2017, 06:28:00 PM
I am having surgery on Monday (4th) and will be off the board for the most part for the next 1-2 weeks.  Please direct any questions, etc., to Three Roses, Dee and/or Blueberry.  You are in great hands with them!   :yes: 

****************************************************************************

PS - If you are struggling with the upcoming holidays, please reach out.  It's a tough time of year for so many of us and connecting here, even if it is in cyberspace can help ease that loneliness and grief.  We can help one another  :grouphug: 
#4913
General Discussion / Re: The right to be a person
December 01, 2017, 10:46:07 PM
It is I know Blancalap  :yes: 

It takes practice to learn something new (e.g., "I am not responsible for this person's behaviour, they are."), and unlearn something old (e.g., "I deserve to be treated badly because I am broken, bad, worthless ..... :blahblahblah:"). 

Maybe try and give yourself the gift of time in this   :hug:
#4914
General Discussion / Re: The right to be a person
December 01, 2017, 08:20:13 PM
QuoteBut here is the question, does it give you an excuse to treat that person like s/he is not one? I mean, s/he doesn't even act like a person, but s/he is. So, how do you treat her/him?

As I recover and practice self-care more and more, I find I am able to disengage from people who do not treat me well.  I've come to see that it is not something I have done or not done that causes their behaviour, it is something inside of them, that they have a problem. So I disengage, walk away from them and leave them to sort themselves out (or not). 
#4915
Poll #1 – To Change or Not to Change the Wording of CPTSD (20 votes in total) - Leave as is: 5 (25%); Change some/all words: 12 (60%); ; Uncertain: 3 (15%)

Poll #2 – The word Complex (13 votes in total) - Leave: 3 (23.1%); Change to Cumulative: 6 (46.2%); Change to Multiple: 1 (7.7%); Uncertain: 3 (23.1%)

Poll #3 - The word Post (12 votes in total) - Leave: 4 (33.3%); Remove: 8 (66.7%); Suggestion: 0; Uncertain: 0 

Poll #4 - Re: The word Traumatic (13 votes in total) - Keep: 8 (61.5%) ;  Use Psychological Trauma: 2 (15.4%); Use Psychotraumatic: 1 (7.7%); Suggestion: 2 (15.4%); Uncertain: 0

Poll #5 - The Word Stress (12 votes in total) - Keep: 6 (50%); Remove: 2 (16.7%); Suggestion: 0; Uncertain: 1; It depends: 3 (25%)

Poll #6 - The word Disorder (15 votes in total) - Keep: 4 (26.7%); Remove: 0; Use injury: 6 (40%); Use syndrome: 4 (26.7%); Uncertain: 1 (6.7%)


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Based on the results of the polls changes to the wording of the current diagnosis does seem to be desirable, and the most popular wording is:

Cumulative Traumatic Stress Injury



*******************************************************************************

Thank you to everyone who participated, I know I got a lot out of it  :yes:   Now I suppose we should consider what are the next steps if any.  I thought perhaps we could use this thread now to discuss what if anything we might do with this info.  Do we contact trauma oriented organizations/researchers/clinicians with our thoughts on the wording?  Do we develop a commentary about it for any professionals who may visit here? Do we just keep it in-house as a discussion that has deepened/broadened our understanding of our symptoms? Other? 

(Note: I will be away from the forum for about 2-3 weeks starting Dec 4th so will not be commenting during that period.  Just so you know I have not abandoned the thread  ;D.)   
#4916
I don't have a FB account as find it way too triggering and intrusive.  My FOO have NDP and are very enmeshed with each other so privacy became a real issue for me over time.   

I don't know if a Twitter account is what you're looking for but I created one for OOTS and you don't have to use your real name and no-one see's your email address.  I intend to create a personal one once I get the hang of tweeting so I can follow other people and orgs that aren't relevant to OOTS.   FB though - never  :sadno: 
#4917
Recovery Journals / Re: blackaltis07's journal
November 28, 2017, 12:09:59 AM
Your post brought back memories for me of when I did not have anyone or anywhere I could say these things and be heard, understood, validated and supported.   So many of us can relate to having suicidal thoughts, of becoming physically ill being around certain family members, and of feeling like an outsider.  Like Blueberry I hope it does help to be able to write about what you experience and feel   :hug:
#4918
Checking Out / Re: Off for a while
November 27, 2017, 11:55:17 PM
 :hug:  Sceal, we'll be here when you come back.
#4919
Quote"You do not have a mental illness. Don't let anyone tell you that. You have a trauma. The very thing  this ignorants would have developed if they had gone through the same! How dare they judge if it is a completely natural reaction that any sane person would have under this circumstances?"

So so so glad to hear this, made my day!! 
#4920
General Discussion / Re: Cptsd is a loose term
November 26, 2017, 06:26:21 PM
 :hug: