(POLL #1) Change "complex" to "cumulative"

[Sceal]

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 

[LittleBird]

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

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.

[Kizzie]

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.    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.

So 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.   

Clinical 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 

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

[Blueberry]

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 

[Sceal]

Thank  you guys for being so kind in regards to my view.  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 like vanilla]

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  .

[Kizzie]

having 'PITS' in the name would be a suitable descriptor of what we are going through  . 

Too funny! (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." 

[woodsgnome]

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.

[LittleBird]

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.

[sanmagic7]

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.

[Sceal]

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:

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:

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.

[sanmagic7]

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. 

[LittleBird]

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.

[Kizzie]

Etymon - I hope your pain has subsided 

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.     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.   

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.

[Kizzie]

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.