Out of the Storm

It would make more sense. 

I've read were a therapist didn't take C-PTSD seriously because they thought that all PTSD was complex.  But that's not what it means.

 :yeahthat:

Makes a lot more sense to separate it out like that; one of those apples and oranges comparisons in some respects. I've never been a fan of 'dis'order either--too bad the words used sound like this is some horrible stigma, on top of the rest of it.

i agree with both of you.  so many of these diagnostic words focus on what's 'wrong' with the individual instead of the strengths, determination, courage, etc. - in other words, what's 'right' with us.  we've survived so much with so little knowledge, info, and understanding.  that counts for a lot.

Also, the idea of cumulative is more to the point. It isn't one incident. It's the cumulative effect of many smaller incidents (for some, all were huge - such a tragedy). And the power of those incidents is multiplied exponentially the longer and worse those incidents were.

To me, a way to get others to understand is that a regular foot soldier may end up with PTSD after surviving an explosion. That's bad, that's real and that will take time to recover from. However, the soldier who was held prisoner and tortured will certainly suffer from PTSD, but it will have deeper elements than the explosion survivor. Because it isn't one incident, it's a series of incidents that built up over time while the ability to flee the abuser was not possible. When finally free of the captor, that soldier has a much more cumulative effect to his PTSD.

Since most people still only see PTSD as a military situation, I think of it in those terms to explain to others.

What about short term and long term psychological trauma injury (STPTI and LTPTI), or even short term and long term psychological traumatic stress disorder (STPTSD and LTPTSDI)? 

They don't exactly roll off the tongue though  ;D

"Cumulative" is perfect. It makes much better sense to me than "complex", it requires less explaining. Plus they're both C so the c-ptsd can stay in place.

Not sure about short term / long term, because ptsd can be very long term in result though the cause is short term. So if it's from the viewpoint of the cause then c-ptsd is more long term, if it's result then I sadly come from a country with a lot of ptsd and I see people struggling with it for life.

I have so much to learn about trauma but for now I get the feeling the main difference between ptsd and c-ptsd may be that c-ptsd goes much more deeply into our sense of self. We lose who we were, or never even got to be in the first place. We're not traumatized because something happened to us, we're traumatized because we've been taught, by people we trusted, to become our own worst enemy.

The way I imagine it is as though ptsd is on a certain volume of trauma, and c-ptsd turns ptsd up and makes it even more powerful. Yay...

I read earlier today that there are high chances that complex ptsd will get its own diagnosis code in ICD-11 thats under revision now and should be released early 2018.
Maybe this will be helpful for those of us whos healthcare system uses ICD rather than DSM-V.

Finding out about this I also noticed there are different requirements from getting the PTSD diagnosis between ICD-10 and DSM-V. Thats interessting.

I would support this too.

Everyone is complex. This word in itself doesn't describe anything new for a person with an everyday perception of PTSD.

Cumulative is a better descriptor. Someone tell ICD-11.

What does Cumulative mean?

Gradually building over time.

Quote from: etymon on November 04, 2017, 01:03:16 PM
Gradually building over time.

Thank you :)

I saw a term "psychotrauma" in something I was reading recently.  It was used to distinguish it from physiological trauma (e.g., bad accident).  So perhaps cumulative psychotrauma?  :Idunno: 

My thoughts are the word psycho has negative connotations. I don't think that would be easy to accept, explain or understand.

"Cumulative psychological injury"

Might be easier to communicate to people who haven't experienced it, or can't easily understand the damaging effects of long term trauma. 

Cumulative does seem to make more sense than complex.

I am also in the camp that argues for 'injury' rather than 'disorder'. I use the analogy - if I had been hit in the leg by a club, no one would say 'you have a bone disorder' they would say 'you have a leg injury/broken leg bone (implying INJURY rather than disorder)'. Walking poorly, or even not being able to walk, expressing pain, etc. would be signs that I have an injury not a disorder. Well, someone whacked me in my emotions and psychological well-being with a club. Why is this injury suddenly now called a disorder? Additionally, 'injury' indicates 'was done to me' and also 'with treatment will heal (not always back to normal but to 'good' and 'good enough)'. Disorder, at least in the culture where I live, means 'crazy' (and we know there is nothing inherently wrong with being 'crazy' but the surrounding culture has not gotten there yet), 'taboo', and worst 'shake it off, lazy person' while somehow also contradictorily meaning 'stuck with it forever even with treatment'.

Finally, really shame on the therapist who dismisses the different reality of those with C-PSTD (and I try to not 'shame on' anyone so you know I mean it here). That is such an abusive form of gaslighting   :pissed:. It would be no different that that person speaking to someone with a compound fractures in their leg and saying 'I don't know why people are making a big deal about your leg and needing surgery for it, other people have sprained their ankles and that is painful too.'.

I agree Etymon, it could come across as quite negative, at least to those not in the field of mental health.

"Cumulative psychological injury" I like including "injury" over "disorder" I Like Vanilla.  We were basically "whacked" in the psyche and our reactions are normal to the trauma inflicted.  "Disorder" does pathologize us rather than putting the emphasis on what we endured.

That said, I  wonder if leaving out "trauma" and "disorder" might lead to us being taken less seriously than we already are now  :Idunno:  I guess what I'm wondering is that although this term might be more accurate and destigmatizing for us (which is a good thing as we are at the centre of this afterall), how would those in the mental health field and other stakeholders (govt) perceive it? Would it be less "worthy" of attention, treatment,  services, etc? 

On the other hand (just musing/dreaming here as I write  ;D), it would be quite something for us as a community to push for and achieve a change in the diagnosis so that it better reflects how we think and feel about having CPTSD.   :yes:

I think this is a complicated matter. On the one hand you have the diagnosis as a clinical thing, on the other you got the patient and their life experience.
As a medical worker I can understand the need for clinical words and diagnosis. There is a difference between lets say 'injury' and 'disorder'... in the case of PTSD it follows a trauma. However, not everyone who survives a trauma devellops PTSD. Infact I think the percentage is about 20% after a single trauma. (though I might not be quite updated on that part). In that case 'injury' doesn't work, what about those who do not devellop PTSD (as it is understood today) but still has a lasting injury? How do you seperate them clinically?

Of course, on the other hand, as a patient having a 'disorder' can be more stigmatizing. It can alienate (trusted) family and friends, and that is a hard thing to have to live through as well. I don't tell people I got c-PTSD or a PD. I just say I got anxiety - if they ask. Unless I trust them, or they are medical professionals.
Although it is more openness around mental health now than it was when I joined the "system", I still feel stigmatized, and people don't always understand and it's hurtful and exhausting to try and explain over and over again.

And then there is the debate about whether PTSD (any form of it) is an anxiety disorder - or if it's something else/more. Personally I believe it is something different than a "clean" anxiety disorder, because it has so many other factors as well as anxiety.

To me the end question is: Who is it important for me to understand the debths and the complications with PTSD? My family and friends, or the medical personell I get in contact with? Of course, both would be the better option. But my parents are a little close-minded where it comes to mental health, so they wouldn't understand fully anyway "Can't you just take a pill?" would be my dad's response. Which is part of my reasons why I don't include them in my health. So I need my Psychologist, my GP and my future nurses to understand that living with PTSD is not a walk in the park.
With this in mind, I think Post-Traumatic Stress Disorder fits. It's post a trauma, and it's develloped a stress disorder within the body. And on top of it all... it is complex.  But hey, the stigmatization is real. And I don't dismiss it, I'd just rather aim towards having people better educated.

i'm a little nervous about posting this, and I hope it doesn't offend anyone. I most certainly did not mean to do that. I am going to go hide now and hope I didn't start a conflict  :disappear:

You haven't offended me Sceal! Your perspective is completely valid  :grouphug:

We are all experiencing different reactions from professionals. Some are getting help in reasonable time, others not. The treatment varies within that, just as our experiences, symptoms, ability to express and cope varies.

I don't think there is just one label that will feel right to all of us because we are diverse. We each have a range of things going on.

What would help me is recognition. Clinical language can be a barrier to professionals, just as lack of awareness of long term psychological (etc) abuse.

My parents and their parents suffered from CPTSD. When I asked for help as a child, there was so little understanding, so much taboo and I wasn't listened to. Discrediting behaviour because it wasn't printed in the DSM... I'll have to work on a word for that when I feel calmer.

I agree with you Kizzie, about the importance of being taken seriously. Attitudes will change, hopefully before the next generation.

No worries about offending me Sceal, I love discussion!  The more who weigh in in a respectful, considered way, the better and deeper understanding about something can be achieved in my books.  :yes:  It's just so difficult for most of us as disagreement inevitably led to very personal and angry conflicts, or so it was in my FOO.  It took me decades to unlearn that.

QuoteSo I need my Psychologist, my GP and my future nurses to understand that living with PTSD is not a walk in the park.

Agreed, but for me the question is do they understand? As we see from posts here CPTSD is often confused with PTSD by therapists.  I regularly get email from mental health students and professionals as Site Manager asking to conduct research  on PTSD, link to a book or resources for PTSD, etc.  I patiently explain the difference each time and in most cases they do not come back because then they understand the two are similar in some respects but differ in important ways.  It may be that once CPTSD is in the DSM this will change, but there's no talk about that thus far in any of the literature I've read.  It is only being included in the WHO ICD in 2018. 

So at the very least I think the two need to be more clearly differentiated, and also maybe in terms of using the word "post."  I don't think of my trauma as in the past (it's more a case of that's when it started),  because I was involved with my FOO into adulthood until I went NC and LC, and they were still traumatizing. Even being LC with my NPDM can be traumatizing as she has not changed (and never will), and I find I am vulnerable when I am ill or stressed.

Also in terms of trauma being in the past, there  are members here who developed CPTSD as a result of being traumatized as adults in the present (e.g., workplace bullying and harassment, domestic violence, etc).   So for them it's not after the trauma, they can still be right in the middle of it.   

QuoteClinical language can be a barrier to professionals, just as lack of awareness of long term psychological (etc) abuse.

I agree Etymon we all have different experiences with professionals and it is the reason I keep wondering if a change in wording might help.  I've shared this before but last year when I had knee replacement surgery the anesthetist asked me why my childhood abuse couldn't be left in the past (I had listed Complex PTSD as the reason for taking certain meds).  Really?  Gah!  On the other hand my dentist took me very seriously and was so very gentle and careful with treatment I actually am not phobic about going in any more.  So  :Idunno:

Anyway, I'm really enjoying chatting about this so tks for weighing in all  :thumbup:.

I'm not offended Sceal. In fact I think it's really interesting what you wrote because you've given us a perspective from a medical point of view. Please don't hide away, come back  ;)

Thank  you guys for being so kind in regards to my view.  :grouphug: It honestly means alot!

I've had another thought, more of a question really. I think I've read or heard somewhere that another discussion regarding the PTSD (on a general note) is something to what you mention, Kizzie. That there is a discussion in regards to the word "post", because for some it isn't over yet, and even the various kinds of flashbacks are in a way re-traumatizing so we're still not out of the woods, even if the initial event is over, the flashbacks makes us relive it over and over again, and our brain can't differentiate between reality and a dream. So a flashback is infact real to the mind, and that would also argue against "post". So my question is do you guys think that - actually I've no idea how to phrase it. It's about whether different trauma has in a way different "side-effects" kind of.

I agree that trauma must still be part of the name; the trauma caused the injury.

Someone on a different thread suggested 'syndrome' rather than 'disorder' (with apologies to that person as I can no longer find the thread to give proper credit).  To me syndrome works better than disorder, but injury is still more accurate (though likely also less palatable to the decision-makers). Maybe complex post traumatic injury syndrome? compoundPTIS? CummulativePTIS? it is a shame that the T and I cannot be interchanged in this particular set of acronyms; having 'PITS' in the name would be a suitable descriptor of what we are going through  ;).

Quote from: I like vanilla on November 07, 2017, 05:42:34 AM
having 'PITS' in the name would be a suitable descriptor of what we are going through  ;). 

Too funny! :thumbup: (but sadly very true). 

Tweeted out an article a few days ago that talks about using the word "reaction" instead of "disorder" - less stigmatizing but I wonder if it it would also diminish how debilitating CPTSD is. The authors argue that the use of the word "disorder" illustrates "psychology's tendency to pathologize reactions to trauma rather than emphasize the central important of healing."  I like that this is coming out of those is the field rather than from us as it demonstrates sensitivity to the stigma we face IMO.  Anyway, it's here for anyone who's interested - "http://www.tandfonline.com/doi/full/10.1080/15299732.2016.1103103?platform=hootsuite

Re the word "post" -  After what the anesthetist said to me (why can't you leave it in the past), I thought later "He thinks I am holding onto my trauma when in fact it is holding on to me, and worse it's still happening." 

I know I'm being lazy here, but...

1. When does the new manual or whatever it's called come out?

2. Exactly who determines its contents?...some association no doubt...

3. Is this anything like public policy, where there is a commentary or question period?

4. If there were time and an open comment period, would the public have an opportunity to weigh in, where/when, or is it just the association gurus with the final word?

Just curious; and suspicious, of how these pronouncements get finalized; and then followed rigidly by 'clinicians'.

But what do I know, being disordered and all.

I feel a little guilty for enjoying this thread. Understanding the deeper meaning behind language is helpful for me. My phone battery died while I was responding to Kizzie's post with examples of alternative meanings to these words. If we understand how diagnoses sound from different perspectives, we understand how our experiences can be misunderstood. Disorder might sound "chaotic" to us - but perhaps is an attempt to explain the way memory and feeling can be lost/numbed/triggered etc. in a way that is unusual from everyday interaction.

To be fair - surgeons, anaesthetists et al working with horrific physical traumas - they are numbing their senses and emotions in this environment. Human behaviour is present in every interaction - we all let go of trauma on some level. How do we quantify emotional or somatic pain? Pretending it isn't there or numbing it inefficiently doesn't make it go away.

I've cried so much today. I've endured horrific somatic pain in my arms and legs after more shocks over the last few days. Experiences that are "still holding onto me" is an accurate description of this feeling.

why lazy, wg?  you're asking questions - i think of that as proactive.

from what i understand there is a mix of people who determine what is considered for the dsm (diagnostic and statistical manual).   some of them are in the mental health field, others are, sadly, in other businesses, such as insurance.  there is no input, that i know of, from the public - the people who are actually suffering - nor from your garden-variety therapist who actually works with these people.

the latest i've read is that the current edition of the dsm is no. 5, and it was stipulated that ptsd and c-ptsd do not have enough differences for c-ptsd to have it's own determination.   i'm taking it for granted that no one on the board has suffered from c-ptsd.

there have been cases made to include c-ptsd, but they been shot down.  the dsm is used primarily by ins. companies to determine how much therapy they're willing to pay for.  for example, the last i heard (many years ago, it may have changed by now, but this is just an example) was that depression was allotted 12 sessions of therapy.  the board decided that was enough time to 'cure' someone of it.

therapists got awfully creative in order to continue working with clients whose problems lasted more than 12 weeks, including manipulating sessions (have a family member come in for a session, then they could continue with their client for 12 more weeks under the heading of 'family therapy').  in my opinion, it's ridiculous what hoops we were made to jump thru just to get valuable and enough time to work with a client.

these diagnoses are also passed along to other mental health professionals as a sort of 'heads up' so they think they know what they're looking at in a client.   some of them stay with the original diagnosis, others ignore it and decide on something else.  i know one individual who probably had 15 different diagnoses, ranging from adolescent confusion to paranoid schizophrenia.  yeah, that makes sense.

unfortunately, that's how it is, and i have no idea if or when it will change.  those in charge run the show, and that's it.   it hasn't been that long that homosexuality was finally removed as a 'disorder'.   i certainly hope that the change comes thru soon re: c-ptsd.  it's so different from ptsd in so many ways.  i'm glad it was changed in one place at least.  it's a start.

i, too, am sorry about your pain, etymon.  i can totally relate, and it sucks.  hugs all around.

I've never heard of insurance people joining in deciding diagnosis terminology, but in the states nothing surprises me anymore. However, I looked it up and in regards to DSM-5 it says under APA's FAQ page:

Quote
APA recruited more than 160 of the top researchers and clinicians from around the world to be members of our DSM–5 Task Force, Work Groups and Study Groups for this important job. These are experts in neuroscience, biology, genetics, statistics, epidemiology, social and behavioral sciences, nosology, and public health. These members participate on a strictly voluntary basis and encompass several medical and mental health disciplines including psychiatry, psychology, pediatrics, nursing and social work.

For ICD-11 it is:
Well, I couldn't really figure out who they hire. But I suspect it is people working for WHO (World Health Organization) They do say this however:

Quote
Contact US

The WHO Beta Team is poised to respond to additional questions and comments about the ICD-11 beta phase.

Please address your comments, questions, and concerns to icd@who.int

So there's a possibility to e-mail them atleast.

As far as the release of the new ICD11, that wont happen until june/july 2018 at the earliest.

well, maybe i heard wrong about the ins. people, but 25 yrs. ago when i was more fully involved in the field, that was the going concern.  it was before the dsm-5 came out, tho, probably even before the dsm-4, for that matter.

they make it sound good, don't they?  altho i've had to use it for ins. purposes, i've never been a big fan.  too much disturbance about it among the therapists i knew, very confusing to try to figure out how to diagnose a client, and it was pretty much illness-based rather than coming from a wellness and strength perspective.

i hope it changes soon.  you'd think that with all those types of people from the various disciplines they would have figured this out already.    aaargh!  thanks for the research, sceal. 

Thanks Blueberry and sanmagic7 :)

sanmagic - Was it the 70's that homosexuality was removed from dsm? Pathologising human behaviour on such a bias can lead to it being treated with fear and stigma. Shame can shut down conversations and awarenes - about sexuality or other behaviours or relationships we encounter. It's not worked in the past and it's not going to work for children who are being abused today :'(

If you look up DSM on Wikipedia, there is a rather large section of criticisms. The arguments seem fair.

Etymon - I hope your pain has subsided  :hug:

Re getting involved - I wonder if the LBGTQ community had any part in homosexuality being removed from the DSM?  In any case, why not email the WHO about the ICD-11 before it is actually published? There's nothing stopping us from trying to weigh in really.  :Idunno:   Afterall, we are 'lay experts' so to speak about Complex PTSD  (i.e., our creds come from the lived experience and indepth knowledge of the disorder), so we have every right to voice our opinions/concerns. Personally, I'd love to be a contributor to my diagnosis and treatment rather than a consumer of whatever is handed out to me.    :yes:

And I suppose there's no reason we couldn't write other organizations and share our thoughts on this (and any other issues/concerns), and perhaps even join in conversations about CPTSD, be included at conferences and such. 

We'll never know until we try.

PS - I suspect that the CPTSD community is really quite large, that we here are just the tip of the iceburg. And if that is the case, as more people with CPTSD find their way here and other groups, into T offices, etc., there will be a growing push for treatment,  services, and greater involvement. 

I agree there is likely to be resistance by govt/health insurance companies because of the amount of resources that will be required if it is recognized as a distinct diagnostic construct.   However, if we look at those with (simple/common) PTSD even and other groups who have banded together, spoken up, and pushed back, a lot of change can and does happen. 

I think it's worth a try too. Having to argue a case for care is exhausting! Are you thinking of an epetition or emailing WHO individually?

My moods/states have been up and down at the moment, lots of difficult stuff to process in between. My sharp pain isn't constant, but it builds up in my joints. I need to take up yoga again!

Been enjoying reading this thread.

I think now is a good time to rephrase CPTSD to de-stigmatise and de-pathologize what is truthfully an injury accumulated over time, for the majority (here I think) growing up in an abusive environment. Having read 'The Body Keeps the Score' by Bessel Van Der Kolk, it's clear from brain imaging techniques that parts of the brain become damaged during an abusive childhood, resulting in a host of physiological changes. So 'Injury' rather than 'disorder' makes perfect sense.

Now is a good time to change the name before CPTSD becomes embedded in public consciousness and the medical profession, before it becomes mainstream. I too dislike the word 'disorder' as it is stigmatising. 'Complex' is a vague word, sounds like 'complicated'. Tells you little. Whereas 'Cumulative' is clear. Immediately, you get the impression that it develops over time, hinting at an ongoing traumatic /abusive living situation.

And

Quote from: Kizzie on November 10, 2017, 06:34:29 PM
I agree there is likely to be resistance by govt/health insurance companies because of the amount of resources that will be required if it is recognized as a distinct diagnostic construct.   However, if we look at those with (simple/common) PTSD even and other groups who have banded together, spoken up, and pushed back, a lot of change can and does happen. 

Absolutely agree. We are powerful. Trauma is disempowering. This is another way of taking our power back, by changing the label that - like the abuse -  puts the blame on us. Let's put it back on the abusers, and call it 'Cumulative Abuse Injury' CAI OR Cumulative Traumatic Injury CTI. The problem with 'traumatic' in my opinion is that it's a REACTION and therefore implies that you could have reacted better, ie it's your fault, even though you may be brain damaged as a result of this trauma. It pathologizes. Whereas  'Abuse' is abuse, no argument. It's something that is DONE TO YOU.

That may be a bit too radical. Just putting it out there.

Tks for the feedback Etymon and Fen, all good and not radical at all to my thinking.  it's almost inevitable that we would want to speak on our own behalf about something like this given how easy it is to connect via social media. 

In terms of actually doing something, I suppose the place to start is to find out what members think about doing so.  A poll is easy enough to create, what is needed though are some options. Here's a draft - plse feel free to suggest changes!  :yes:

Draft Poll

The diagnosis of "Complex Post Traumatic Stress Disorder" should be:

____ left as is

____  changed to Cumulative Post Traumatic Stress Disorder (emphasizes multiple traumas)

____ changed to Cumulative Traumatic Stress Disorder (emphasizes trauma is ongoing and doesn't end for many)

____ changed to Cumulative Traumatic Stress Injury (destigmatizing for sufferer)

____ changed to Cumulative Psychological Trauma Injury (emphasizes trauma is psychological which is important if "injury" is used because definitions often relate to physical injury)

One non-specific definition of  injury from The American Heritage® Medical Dictionary Copyright © 2007

1. Damage, harm, or loss, as from trauma.
2. A particular form of hurt, damage, or loss.

Once members have a few days to give any feedback, I will post the poll and we can go from there. 

i like it.  well done, kizzie.  thanks.

i think it will be empowering, like we're taking a stand and having a say about our own situation (i didn't know what word to use here - 'situation' sounds kind of wimpy).  i hope it's a hit.  i'm in.

Just wondering if multiple might be more commonly used  than cumulative. And if syndrome instead of disorder might be a better fit.

Even the post part isn't always accurate--sometimes the abuse or abusive patterns (syndromes) continue through life, so it's not just an after-trauma abuse problem.

What about MAIS--Multiple Abuse Injury Syndrome? At least this term doesn't carry a blame-the-victim hidden bias. Or pattern instead of syndrome--which comes out as MAIP--Multiple Abuse Injury Pattern.

It's such a tough one and I'm spaced out a bit right now so can't think of anything extra to add. Polling is a good idea though. It's important to have recognition for this. I'd also like to figure out how we can inform professionals a brief explanation. Seeing many people struggling to get recognition, often depending on the staff at the time, but it's a wide spread problem. There might already be resources on here. Kizzie, is there a way to make an extra easily printable list?

The first time I read the suggestion for using "abuse" I felt a kind of resistance. But I held back, because I couldn't figure out why.
Today, randomly it came to me. "Abuse" wouldn't work in my native language.  It would alienate the diagnosis even further, it would make people more scared. And most people's reaction to things they are scared of is to avoid it.

Quote from: woodsgnome on November 12, 2017, 06:45:39 PM
Just wondering if multiple might be more commonly used  than cumulative. And if syndrome instead of disorder might be a better fit.

Even the post part isn't always accurate--sometimes the abuse or abusive patterns (syndromes) continue through life, so it's not just an after-trauma abuse problem.

What about MAIS--Multiple Abuse Injury Syndrome? At least this term doesn't carry a blame-the-victim hidden bias. Or pattern instead of syndrome--which comes out as MAIP--Multiple Abuse Injury Pattern.

:yeahthat:

I like MAIS. It is more descriptive and accurate than CPTSD. Plus the acronym can be more easily said that CPTSD, as MAIS spells out a word.

Lots of good ideas and opinions  :thumbup: 

Maybe we should backtrack a bit though and start with  a simple poll to see what members think of the diagnosis.  If    most member want to see a change then maybe the place to start is to find out which word best describes our symptoms (a disorder, syndrome or injury).  If a  majority seem to be in agreement about choosing from these three words, I'll do up a second poll and then we can move on from there to the other words in the diagnosis if that's OK.   

Here are some definitions about the what word to use to describe our symptoms: 

Disorder  (https://www.google.ca/search?source=hp&ei=jTELWunhA4LZ0gL3pYugCA&q=definition+of+syndrome&oq=definition+of+syndrome&gs_l=psy-ab.3..0l5j0i22i30k1l5.1537.5938.0.7127.23.20.0.0.0.0.394.2447.0j9j3j1.13.0....0...1.1.64.psy-ab..10.13.2440.0..46j0i67k1j0i131k1j0i46k1.0.xnySGl1Ta6w#dobs=disorder) (as used in medicine) - a disruption of normal physical or mental functions; a disease or abnormal condition.

Syndrome (https://www.google.ca/search?source=hp&ei=jTELWunhA4LZ0gL3pYugCA&q=definition+of+syndrome&oq=definition+of+syndrome&gs_l=psy-ab.3..0l5j0i22i30k1l5.1537.5938.0.7127.23.20.0.0.0.0.394.2447.0j9j3j1.13.0....0...1.1.64.psy-ab..10.13.2440.0..46j0i67k1j0i131k1j0i46k1.0.xnySGl1Ta6w) - a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.

Injury (http://www.dictionary.com/browse/injury) - Damage, harm, or loss, as from trauma; A particular form of hurt, damage, or loss; wrong or injustice done or suffered. ; and/or any wrong or violation of the rights, property, reputation, etc., of another for which legal action to recover damages may be made.

My two cents. I'm not thrilled about "disorder" but would be OK with "syndrome" as it is somewhat less negative / stigmatizing. Personally I like injury the best because it has both medical/psychological AND legal connotations/implications (so it is possible perpetrators could be held accountable in court), and it emphasizes an external source of trauma (a person or situation) rather than the symptoms we end up with (which can be construed as the result of personal weakness, susceptibility, sensitivity.... ).  I also like "injury" because it sounds more amenable to treatment than the other two. 

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

So if there's some agreement about these three words, I would create a simple poll that would look something like this:


Poll #2

This poll is to determine what members think about the word ""Disorder" in the diagnosis "Complex Post Traumatic Stress Disorder."  Please choose one of the following:

_____ Keep the word "disorder"

_____ Change "disorder" to "syndrome"

_____ Change "disorder" to "injury"

I like your thinking on this Kizzie.

Have voted to change the word 'disorder'.

A YES  :thumbup: for injury.

:yeahthat:

Fen

Quote from: woodsgnome on November 12, 2017, 06:45:39 PM
Just wondering if multiple might be more commonly used  than cumulative.

Not sure about multiple. Doesn't multiple just mean 'various' or 'many' whereas cumulative includes the connotation of one being added on top of the other, accumulating as it were and making each other worse?

I lean more toward cumulative too BB -  it gives more of a sense of the layering of trauma  over time than multiple (imo).  WG - I do like the idea of coming up with a recognizable acronym though.  :thumbup: 

Note: I'm going to leave the poll open for a week or two in case more members want to weigh in on the issue of whether or not a change to the diagnosis terminology is desirable.  So far we're pretty much evenly split and there haven't been a lot of votes overall which may mean this is a non-issue for now but we'll see  :yes:.   

 

Quote from: Sceal on November 13, 2017, 05:09:48 PM
The first time I read the suggestion for using "abuse" I felt a kind of resistance. But I held back, because I couldn't figure out why.
Today, randomly it came to me. "Abuse" wouldn't work in my native language.  It would alienate the diagnosis even further, it would make people more scared. And most people's reaction to things they are scared of is to avoid it.

Sceal, if "abuse" wouldn't work in your native language, probably your country would find a different descriptor but that might not necessarily mean we need a different one globally?

What I don't like about abuse though is that it completely leaves out the fact that childhood neglect rather than overt abuse can equally lead to CPTSD.

In my country they say that DESNOS used to be the English-language version of the designation we use in this country, which is a direct word-by-word translation of complex post traumatic stress disorder. So either you back-translated off us, or this information is wrong. I can't be bothered to research it.

i absolutely think it should be changed from c-ptsd, mainly because too many professionals (and i've run into this personally) only see the 'ptsd' part, and leave it at that.  even when i've written out the word 'complex', it's still been ignored.

i don't like the word 'disorder' because it comes from an illness-based place, which is what the dsm is all about, rather than a wellness or hopeful place, such as 'injury', which someone noted gives the connotation of a healing direction.

i like the word 'cumulative' for the layering over time indication.

i like the  idea of leaving the word 'post' out of it, because, as someone else noted, often the trauma is ongoing.

cumulative abuse/neglect traumatic injury or cumulative abuse/neglect traumatic syndrome.  canti/cants.  just trying those on for size.  nothing concrete.  maybe leave out the word traumatic.  or change it to trauma.   not sure.  cumulative abuse/neglect trauma.  cant  maybe trauma says it all.

whatever it turns out that we decide, i believe it will be better than what we have now.

This topic for me is a toughie.
As we all know, CPTSD isn't a clear or even considered a "real" diagnosis in the DSM -
As of right now, & how the DSM is based off of, I don't think, anytime soon, CPTSD will get the acknowledgment it needs - & that is due to all of the over lapping symptoms we have with other "disorders" - syndromes & in my opinion a better description would be injury.

That being said, I think the word cumulative is a perfect description for merging it with PTSD - based on the increased amounts of trauma - PTSD itself is complex, that we can't deny, so I think if it were changed to Cumulative PTSD - they can then have a better footing on how much more the intensity is for us, rather then someone who has just experienced one traumatic event, which can change someones brain chemistry, definitely. But, cumulative would give a better distinguishing quality to our compounded, complex, trauma that we've endured throughout our whole lives - Of course this is on a scale, but I think that there should be clear distinguishing factors from 1 traumatic experience (Which is fine, per the individual, and not any less real) Vs. a multitude of traumatic experiences that would compound the effects tremendously of average PTSD -

:grouphug:

I wonder if Dr. Bessel van der Kolk would have a stand on this topic. He was one of the lead people that managed to get PTSD recognized as a diagnosis. He is also one of the few researchers out there that I have found who recognizes that CPTSD is different from PTSD, and I am someone who enjoys this type of research so have made an effort to find journal articles on the topic (many of the others I have found are led by members of his team, and/or his grad students). I have seen him speak on Youtube, read some of his articles, and read The Body Keeps the Score. My sense is that he is fairly strong-minded but also that he cares greatly about his clients and everyone with CPTSD, and that he is truly driven to do what is best for us.

Quote from: Blueberry on November 16, 2017, 06:10:50 PM

Quote from: Sceal on November 13, 2017, 05:09:48 PM
The first time I read the suggestion for using "abuse" I felt a kind of resistance. But I held back, because I couldn't figure out why.
Today, randomly it came to me. "Abuse" wouldn't work in my native language.  It would alienate the diagnosis even further, it would make people more scared. And most people's reaction to things they are scared of is to avoid it.

Sceal, if "abuse" wouldn't work in your native language, probably your country would find a different descriptor but that might not necessarily mean we need a different one globally?

There's no other word in my language I'm afraid. We only got a fraction of words compared to the english language. It's not so much that it's a bad word, it's more that it wouldn't then include SA victims unless it was incest. And it wouldn't include neglect for example, or religious manipulation just to name a few.

Personally I think more information and more correct distinction and information out to professionals and more general public knowledge generally about all the stages of PTSD as well as well as information about what is actually abuse and where the lines go in regards to SA, would be more beneficial as a whole. There's been other diagnosises that's changed names over the years - and I don't think it helped much. One example is multiple personality disorder that changed into Dissociative Identity Disorder. I think that only increased confusion. Same with psychopaths became antisocial personality disorder, that didn't help at all. Everyone still calls it psycopaths.  :stars:

I vote for:

___changed to Cumulative Psychological Trauma Injury  :cheer: (although that is a "mouthful"  ;D )

I've ALWAYS disliked the labels of "disorder" or "syndrome" as these somehow sound like, to me, as if we (those that are diagnosed) have somehow contributed/created it, vs. it being done to us.

I've ALWAYS thought that the word "injury" needs to be in the mix because that is exactly what I believe I have suffered from.  Many injuries to my psyche.  I was even thinking this in the car last night.  You can't SEE  :aaauuugh: the injury, as it shows up in our thinking and behavior.  I believe in the medical profession the concept of "injury" needs to be considered more than just a physical instance.

One more thought, I am an "alcoholic" but I HATE this label as it bring up negative images, stories, etc.  I just say I don't drink.  I consider it an allergy, not a disease.  It never got worse for me, it didn't progress, I just drank heavily for 35 years because I NEEDED IT, due to all my internal anguish.  But I also know I have the genetic piece where my body reacts when alcohol enters my body.  I am so grateful I quite drinking over 6 years ago so I could finally discover my cptsd. 

This discussion really hits home for me the importance of WORDS...   :grouphug:

Quote from: Sceal on November 17, 2017, 07:05:22 AM

Quote from: Blueberry on November 16, 2017, 06:10:50 PM

Quote from: Sceal on November 13, 2017, 05:09:48 PM
The first time I read the suggestion for using "abuse" I felt a kind of resistance. But I held back, because I couldn't figure out why.
Today, randomly it came to me. "Abuse" wouldn't work in my native language.  It would alienate the diagnosis even further, it would make people more scared. And most people's reaction to things they are scared of is to avoid it.

Sceal, if "abuse" wouldn't work in your native language, probably your country would find a different descriptor but that might not necessarily mean we need a different one globally?

There's no other word in my language I'm afraid. We only got a fraction of words compared to the english language. It's not so much that it's a bad word, it's more that it wouldn't then include SA victims unless it was incest.

OK I understand.

Quote from: Sceal on November 17, 2017, 07:05:22 AM
And it wouldn't include neglect for example, or religious manipulation just to name a few.

In English "abuse" doesn't cover neglect either so that speaks against it too. I'm not sure about religious manipulation, whether that couldn't be some form of emotional/psychological abuse.

OK, we do seem to be getting more members who want to see changes so I will do up a few more polls and see where it takes us. 

thanks, kizzie.  this is brilliant.

I can't add any additional polls to this thread so I've had to start a separate thread for each poll unfortunately.  It's a bit awkward I know - apologies but I'm limited by what the platform will allow. Anyway, I'll add the URL for each poll here as I post them.

Poll #1 - Re: The Terminology in "CPTSD" - http://outofthefog.net/C-PTSD/forum/index.php?topic=6758.0

Poll #2 - Re: The word "Complex" in CPTSD - http://outofthefog.net/C-PTSD/forum/index.php?topic=8184.0

Poll #3 - Re: The word "Post" in CPTSD - http://outofthefog.net/C-PTSD/forum/index.php?topic=8179.0

Poll #4 - Re: The word "Traumatic" in CPTSD - http://outofthefog.net/C-PTSD/forum/index.php?topic=8187.0

Poll #5 - Re: The word "Stress" in CPTSD  = http://outofthefog.net/C-PTSD/forum/index.php?topic=8180.0

Poll #6 - Re: The word "Disorder" in CPTSD  - http://outofthefog.net/C-PTSD/forum/index.php?topic=8182.0


Many thanks to LaurelLeaves for getting this whole community discussion started!     :applause: