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

[LittleBird]

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!

[Fen Starshimmer]

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

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.

[Kizzie]

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! 

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. 

[sanmagic7]

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.

[woodsgnome]

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.

[LittleBird]

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?

[Sceal]

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.

[I like vanilla]

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.

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.

[Kizzie]

Lots of good ideas and opinions   

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 (as used in medicine) - a disruption of normal physical or mental functions; a disease or abnormal condition.

Syndrome - a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.

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"

[Fen Starshimmer]

I like your thinking on this Kizzie.

Have voted to change the word 'disorder'.

A YES  for injury.



Fen

[Blueberry]

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?

[Kizzie]

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.   

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  .   

 

[Blueberry]

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.

[sanmagic7]

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.

[silver_lining]

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 -