DID What's so bad about did??

[Muttly]

@Reflections thank for the suggestion. I couldn't do that. I think hearing the others would freak me out. I think some of them sound very different than me (their voice, intonation, etc). I did email my T and say I didn't remember and she told me the basics. Bleh. Not sure I wanted to know, but suppose it's part of the work.

@Bkinder (great name by the way) I think there is a difference between stating that some people fake ptsd or any other illnes and asking someone to prove their ptsd is real. I can understand how this is a charged conversation.

I have seen this conversation occur in a variety of ways about a variety of ailments/disorders. I understand why the suggestion that people faking can be upsetting and would never ask anyone to prove their diagnosis. As someone who has been diagnosed with DID, when I first read @anthony's replies I felt defensive and almost targeted. I understand that wasn't his intent. The first time around I wasn't able to see around that, and left this thread. This time, as the conversation evolved, I was see what he is getting at. So, I do see how talk about "fakers" can feel like a denial of those with valid diagnosis.

At the same time, I can see the harm those pretending to have a disorder they do not. I will use a different example. For a time, dyslexia was a thing everyone seemed to identify with. A lot of people would say "Oh, I'm dyslexic" over random things. Dyslexia seemed to constantly be represented by people seeing or writing things backwards. As someone with significant issues with dyslexia and dysgraphia it drove me crazy. It made it so much harder for people to understand my issues. I got a lot of, "well, if you see things backwards can't you...." and that's not at all what dyslexia is. And for they younger me, people saying, "oh I must be dyslexic" when they had some issue, that appeared to me, slight felt dismissive in it's own way. And some of these folks I knew. I knew enough of their story to know they hadn't had the same struggles as I. They hadn't spent years being called retard and having teachers write them off. They hadn't spent years in special education classes and practiced and practiced and practiced so that they could function at school. And on and on.

I also believe I was misdiagnosed as autistic at one point. Yes, I have some of the traits. Yes, my mind is not wired correctly. But the autistic traits can fit under existing issues I have. I wasn't intentionally faking. I didn't know about the DID (assuming I have that). I didn't understand the impact my childhood had on me. I didn't know enough about my learning disabilities. The label explained so much about myself. And I don't think it was horrible that I went through a phase where I thought was right, because it allowed me to learn about myself and feel less bad about myself. It allowed me to explore and accept those traits that do fit under the autistic bubble. As I wasn't getting any sort of benefits (in terms of money/resources) I hope I didn't take away from the autistic community. Did I do damage by falsely (although unintentionally) representing myself? Maybe. Because for those I shared my label with, maybe I presented in ways that don't truly represent autistic folks. If so, I am sorry, but I also can't change what happened. I wasn't trying to "fake". I wasn't trying to get attention. I was merely trying to understand why I am the way I am.

I think I've been around long enough that these conversation typical don't bother me. I have seen these "faker" conversations happen in a variety of contexts. I have seen the ... for lack of a better term... popularity of various disorders and illnesses. Labels can be wonderful because they give us a way to communicate and understand but they are also limiting. This applies to the term faker too. What I've found, watching these arguments happen is that both apparent side is generally coming from a place of wanting to be understood

And with that, I've gone on more than long enough.

 

[TruthSeeker]

@Reflections thank for the suggestion. I couldn't do that. I think hearing the others...

Thank you.

 

[anthony]

I am a big fan of research-based theories...

Everything you wrote is your opinion. So let me simply say, back at you. That is the basis of an opinion. I don’t need to cite data for everything I write. That is silly. Would you mind citing data to substantiate your opinion above please? I read experts in PTSD and can regurgitate that. I don’t pretend to be anything else.

If you have evidence to support your view, by an expert in trauma and PTSD, please cite so I can read. I like learning new things. I don’t like philosophical arguments as though they are evidence based.

 

[TruthSeeker]

Everything you wrote is your opinion. So let me simply say, back at you. That is the basis of an opinion. I...

Anthony, please disengage; its okay to have a difference of opinion. Thanks, BKinder

 

[anthony]

So you don’t like a similar reply? I love opinions. They’re like arseholes, everyone has one. :D

Briefness is due to me being on my mobile. Not big on mobile typing.

 

[Suzetig]

You know, it doesn't matter what kind of seizures they are or what causes them or whether they fit the criteria for either category (label).....because the bottom line is that two different people, one with each type suffer the same: the humiliation and confusion of a seizure and the panic that ensues, along with loss of independence.

Actually it really does matter because seizures brought on by trauma (what used to be called pseudo seizures) don’t respond to drug therapies used to treat epilepsy. So, if misdiagnosed you’re in for a world of pain while the doctor tries to find a medication that works to fix a medical condition you don’t acrually have. And you also don’t get the help and treatment to stop the seizures in the first place. I know this because i had seizures for a long time directly due to trauma and went through this process.

Note that pseudo in this context doesn’t mean fake - there was nothing fake about my seizures, they just weren’t caused by epilepsy. In the same way, someone who claims PTSD without meeting the diagnostic criteria may very well be in a lot of pain - but treating them for PTSD isn’t going to help them get better, saying it’s ptsd when it isn’t can actively undermine their recovery from whatever it is that ails them.

In the same way that I would have argued I had epilepsy when I didn’t, it’s not unusual for someone to argue PTSD when it isn’t - because it doesn’t meet the diagnostic criteria. Folk will do that because it validates their pain, is a handle to hold on to, they may honestly think it’s possible they have it, they may not understand the range of symptoms or diagnosis or they may want to be part of a group with a specific identity but treating them like they have PTSD when it’s not possible (eg no Crit A trauma) isn’t helpful. It’s literally the wrong treatment for the wrong thing.

I'm educated in statistical design and understand how research has to be crafted in order to be valid, reliable, and therefore useful in conversation whose intent is to persuade.

You’ll be aware then that quantitative data only gives a very small part of the picture when researching mental health - RCTs for example may be gold standard in most fields of medicine but don’t necessarily work in mental health where alternative, qualitative, means can provide a much fuller picture of what’s happening and what’s needed.

 

[lostforgottensoul]

I can't believe I missed the seizure part of this post. I agree with @Suzetig 100% as someone that also had a Psychogenic nonepileptic seizure (PNES) or "psuedo seizure". To add to @Suzetig's comment:

The latter person suffers more because it is characterized as a mental health issue, and doctors look down upon people with psychologically linked seizures. I think if you assumed I was just faking my seizures so I could claim the label PTSD, with the stigma attached to seizures, I would not feel welcomed and I'd have the same feeling as I get with doctors......hurt.

None of my doctors looked down on me. It was a real true seizure. When it was over I couldn't tell the paramedics my birthday, what town I lived in, or how old I was and when I checked out of the hospital I couldn't write my name (or anything for that matter) and the inability to write lasted 3 days. I could see the letter in my head but I couldn't transpose that through my hand on paper. I saw my MD, neurologist, and a caraologist trying to figure out why I had said seizure out of the blue. When it was claimed as a PNES my MD explained it to me and then I saw my psychiatrist and therapist to then make that actual diagnosis. None of these Drs looked down on me for having a "psuedo seizure" as I wasn't faking a seizure. A seizure truely occured as did everyone of the after effects of a epileptic seizure. Its not like I decided to drop face first on the ground and fake having a seizure. I had 5 drs doing their own full work ups on me at the same time and none of them looked down on me.

 

[shimmerz]

Actually it really does matter because seizures brought on by trauma (what used to be called pseudo seizures) don’t respond to drug therapies used to treat epilepsy.

I think this addresses the medical protocol issues for PNES but not the psychological aspect of it. I read BKinders post as relating to that more than anything. The thing that entirely screwed with my head when these seizures started happening to me was (and still is) that it was completely ignored or worse, gave reason to abuse me.

I would have a seizure in the hospital and nurses would literally threaten me with physical harm if I didn't move, tell my caregivers to 'use tough love and not play into my games', shoved things into me, beat me, the list goes on and on. I don't know what country BKinder is from but I can absolutely relate to her assertion that seizures, no matter what kind can destroy a life.

None of my doctors looked down on me.

I think we all need to be mindful that this is a global forum where many medical models are in place. I am not certain that it is helpful to debate on the type of care one gets as to the value of our opinions. It is lovely that you got a team of doctors to do work ups on you Lost. Unfortunately that doesn't make someone who didn't get that type of help 'wrong'. It just makes your experiences different.

I am still fighting to get safe housing because of my PNES. People know how to set it off in me and use it to rape me, abuse me, steal from me, the list goes on and on. Canada is far backwards in this regard.

Whether DID is real or not, I can attest to the fact that I have experienced myself and seen in others, states of consciousness that literally destroy lives. Is it is sub personality or a 'front'? Who cares! It is happening. And the longer we nitpick over labels that fit or not, the less helpful it is for those who are suffering in a real ways.

 

[Suzetig]

And the longer we nitpick over labels that fit or not, the less helpful it is for those who are suffering in a real ways.

I agree in as much as the experience, pain and suffering is real regardless however if someone engages with the medical model of mental health (diagnosis - treatment - cure) the label really does matter because the label determines the treatment determines the “cure”. Some of the stigma comes because people get the diagnosis, get the treatment but aren’t cured, because the wrong label led to the wrong treatment.

I tend toward diagnosis purely in as much as it’s a shorthand for what I experience. People have a picture in their mind of what PTSD is, in short they “get it”. The language of diagnosis is helpful dealing with health care practitioners etc but it doesn’t define me or my experience or indeed my healing in that I’ve used a mixture of different therapies at different times and have never found traditional “trauma therapy” useful.

Using a more social model of mental health enables us to look beyond the presenting issues to understand the impact of the wider community, stigma, discrimination etc on health and well-being and recognises environments that are actively disabling/traumatising. It also gives a positive framework for recovery and puts power back in the hands of the sufferer to choose the type of care that actually helps instead of trying to force them into a manualised, skills based therapy box which can be cost effective but insufficient for recovery.

But if you’re talking treatment and cure, you’re talking diagnosis and in that context the label matters.

 

[shimmerz]

the label really does matter because the label determines the treatment determines the “cure”.

I do actually completely agree with this @Suzetig. The problem is that the DSM is a living document that is updated less frequently than perhaps necessary to keep up with the suffering of those categorized by it. And that it is updated because of recognition of those people who were uncategorized in the previous DSM.

We need to remember that refusing to keep up with human experiences or by not having compassion for those who don't quite fit current labels because research hasn't allowed for proper understanding or assessment tools causes unnecessary pain and suffering. Lives can be lost. Lives can be destroyed.

I am much more concerned with people's experiences than I am labels. Just because I can't be categorized doesn't mean my suffering is not real.

 

[Suzetig]

Just because I can't be categorized doesn't mean my suffering is not real

I would never suggest that any individuals suffering isn’t real just because it doesn’t fit a particular box - for me it’s the beauty of not tying myself to whichever diagnostic criteria happens to be flavour of the month. The DSM is a diagnostic guide produced by and for the APA and serves that purpose, it’s not a definitive list of everything in human experience - some of which may or may not be termed pathological in nature.

It does however inform common understanding and therefore common treatment models - so where diagnostic criteria might exclude individuals from a particular diagnosis, treatment models are generally even further behind and constantly evolving.

It’s also true to say that someone experiencing X symptom may have any one of a number of diagnosis or labels which may equally fit. The overlap with borderline symptoms and complex PTSD for example, is well known, and the label in this case matters because of the stigma attached particularly to BPD. Complex grief reactions can sit very close to PTSD in symptomology and treatment guides suggest very different treatment models depending on which you’re dealing with. Both are horrible to cope with but for someone who is completely debilitated, PTSD can feel a bit more credible than grief.

I guess the best approach for me are two questions:-
A. What happened to you?
B. How do you experience life now?

Because regardless of diagnosis you can help and support someone through whatever - it’s the approach my T has taken with me and gets past the DSM stuff - although at one point the label did really matter to me. If someone says they have PTSD, DID, BPD, it’s helpful to know if there’s a formal diagnosis or not especially here where we don’t know each other and where the DSM provides an internationally understood language. And someone saying they have PTSD without the qualifying trauma? Chances are it’s something else working on them, and that’s important too.

 

[shimmerz]

Chances are it’s something else working on them, and that’s important too.

I think it gets tricky when people don't have an understanding of their past traumas. That can be due to lots of reasons. Parental brainwashing, dissociative issues, preverbal traumas, inability to find a dr who understands trauma, so many things. It takes time to get an appropriate label.

In the meanwhile the persons life can be falling down around them and there is no validation for these people. I understand that there is a real concern in mis-labeling people, and recognize that some may be mistaken in their ideas of PTSD and I also realize that in order to keep this board safe for others that needs to be considered.

I am just not certain that people jumping all over a person because there is seemingly no clear line at the moment to trauma is something to be taken into consideration and is important too.