Could EUPD come under the neuro diverse umbrella?

[UndertheCedartree]

I have been to a neuro diversity conference today. One thing that came up was that Emotionally Unstable Personality Disorder (BPD) should be categorised as a neuro developmental disorder like Autism. I found this so interesting as I've often thought the same. There is so much cross over between EUPD and other disorders like ASD and ADHD, for example many of the differences in the brain are the same, impulsiveness and black and white thinking can happen in EUPD and ADHD/Autism.

I would love to hear from anyone who has experience of these disorders what you think?

” I'd forgotten that one 'nothing about us, without us'. This was what I was trying to get over to @rogueone. It is so important to listen to US. We are the 'patient experts'. We have been living this our whole lives not just 7 years while at work and then shut off from it while you eat your dinner and go to bed grin Telling people their lived experience wasn't true...”

Patient experts are very important but you are an expert in your experience and not a general expert in how other people experience their condition/disorder/disease. That’s why we benefit from a range of service user and patient experts. You should always be heard in terms of what works for you and your family but we need to listen to everyone.

I’m sure as a MH nurse you can empathise but please don’t dismiss those who work in these area as “shut off”. Firstly, most people go into these professions because we truly care and wish to make a positive impact. Secondly, you have no idea how much it affects our personal lives. I care about the people I work with, I worry about them on my day off, I wonder how they’re getting on and I never ever properly shut off. I’m not in any way suggesting I should be compared to a person with lived experience, btw. Just responding to your comment that people who are ‘experts’ are shut off. I am not an expert obviously but I don’t claim to be!

@Schuyler

” I'd forgotten that one 'nothing about us, without us'. This was what I was trying to get over to @rogueone. It is so important to listen to US. We are the 'patient experts'. We have been living this our whole lives not just 7 years while at work and then shut off from it while you eat your dinner and go to bed grin Telling people their lived experience wasn't true...”

Patient experts are very important but you are an expert in your experience and not a general expert in how other people experience their condition/disorder/disease. That’s why we benefit from a range of service user and patient experts. You should always be heard in terms of what works for you and your family but we need to listen to everyone.

I’m sure as a MH nurse you can empathise but please don’t dismiss those who work in these area as “shut off”. Firstly, most people go into these professions because we truly care and wish to make a positive impact. Secondly, you have no idea how much it affects our personal lives. I care about the people I work with, I worry about them on my day off, I wonder how they’re getting on and I never ever properly shut off. I’m not in any way suggesting I should be compared to a person with lived experience, btw. Just responding to your comment that people who are ‘experts’ are shut off. I am not an expert obviously but I don’t claim to be!

Yes, exactly. So we should not be called liars when we give our experience. Of course I'm not suggesting a general expert!! But of course as I'm sure you know that hcps are in a position of power and therefore are listened to all the time. As a hcp I don't need anyone championing me to be listened to! As a patient, I absolutely do! Saying 'we need to listen to everyone' is like saying 'all lives matter'.

Yes, of course we think about our patients when not at work, but not all the time. Every decision on our day off doesn't revolve around our patients. And of course we don't stay caring for one person forever, we move on or they move on. One day we (hopefully) will retire, in childhood we knew nothing of our patient's conditions. Our experience at work honestly is nothing like living with a condition. I didn't say hcp's are shut off, but they can shut off.

” Saying 'we need to listen to everyone' is like saying 'all lives matter'.”

I probably wasn’t clear. When I said “everyone” I meant everyone who uses services. No one patient/person speaks for everyone. Many people do not have a voice but still need to be heard in other ways.

@UndertheCedartree

By the way this was a riddle an autistic man told us at the conference today.

A hairdresser says...I'd rather cut 3 Welsh people's hair than 1 English person's...why does he say that?

Ohh.. I’m intrigued @UndertheCedartree. What’s the answer?!?

It's tricky isn't it because it's not always possible to unpick whether brain differences are genetic, caused by trauma, or a combination of both.

Ultimately, brain differences are brain differences. In a perfect world everyone would be treated as individuals and get the support we need and we would all be and feel accepted and understood regardless of how our brains are wired... We wouldn't need to decide whether EUPD should sit under the brains differently wired before birth umbrella or the brains differently wired after birth umbrella.

@Schuyler

” Saying 'we need to listen to everyone' is like saying 'all lives matter'.”

I probably wasn’t clear. When I said “everyone” I meant everyone who uses services. No one patient/person speaks for everyone. Many people do not have a voice but still need to be heard in other ways.

Oh, yes definitely. We all experience things differently, have different needs. Completely agree. And yes quite right some people do not have a voice so we must listen to carers etc. Sorry I thought you were refering to the support worker who claimed she knew better than service users.

DancinOnTheCeiling - so the man who gave the riddle was a teacher and he had a boy with ASD in his class who he wanted to build up his self esteem. He came up with this riddle as he knew the boy would cut through all the 'social stuff' and get to the answer.

The answer is you would get more money cutting 3 people's hair than only 1!

Above for @DancinOnTheCeiling

@nanbread

It's tricky isn't it because it's not always possible to unpick whether brain differences are genetic, caused by trauma, or a combination of both.

Ultimately, brain differences are brain differences. In a perfect world everyone would be treated as individuals and get the support we need and we would all be and feel accepted and understood regardless of how our brains are wired... We wouldn't need to decide whether EUPD should sit under the brains differently wired before birth umbrella or the brains differently wired after birth umbrella.

I really like that way of looking at it. And yes, wouldn't it be great if we could just get our needs met without all the other stuff.

Dr Jessica Taylor has some strong views on BPD/EUPD and that they are a way of the patriarchy silencing the trauma of women, basically. Her book is out soon (picture should be attached).

I do think that the combination of patriarchy and a failure to diagnose neurodiversity in a lot of girls and women. Just generally a model of personality, what is NT and what is ND a whole medical model, medical trials and society structure based on the needs of men mean that there are a lot of women with no labels or the wrong labels who could benefit from a fundamental change in the way we diagnose and treat women who don't conform to current models. BPD/EUPD is a catch all diagnosis for women who may be difficult to diagnose or difficult to treat, and it is inevitable that many of them will have neuro diversity. How could they not?

Personally I don't believe in EUPD/BPD. It's grouping too many different symptoms and life issues and reactions to those together where people within that umbrella really have no commonalities with each other other than being women and not conforming in some way. That shouldn't be a diagnosis. It's a cop out.

AuntFlorence
I can't wait for my book to arrive, its been on pre-order for ages. I really rate the work of Dr Jessica Taylor, she doesn't hold back at all which I like.

@Awalkintime

Definitely, she's fierce! I'm going to channel her energy next time my doctor tries to fob me off with antidepressants or the contraceptive pill for an unrelated issue. She has said so many things I would love to say but don't have the words for. I love that her power comes from research and experience, she's got an awesome power. I am so excited for the book

My son has been diagnosed with EUPD but we have always felt like he has Autism. The psychiatrist has said he has several autistic traits that don't quite reach the level for a diagnosis. He also has a diagnosis of Mixed anxiety with depression, and PTSD from an assault.
I don't think EUPD is the correct diagnosis for him, as from what I've read up it is caused from past experiences and trauma. He was born prematurely- which is the only trauma he's faced, he's 19 now.

@AuntFlorence

Dr Jessica Taylor has some strong views on BPD/EUPD and that they are a way of the patriarchy silencing the trauma of women, basically. Her book is out soon (picture should be attached).

I do think that the combination of patriarchy and a failure to diagnose neurodiversity in a lot of girls and women. Just generally a model of personality, what is NT and what is ND a whole medical model, medical trials and society structure based on the needs of men mean that there are a lot of women with no labels or the wrong labels who could benefit from a fundamental change in the way we diagnose and treat women who don't conform to current models. BPD/EUPD is a catch all diagnosis for women who may be difficult to diagnose or difficult to treat, and it is inevitable that many of them will have neuro diversity. How could they not?

Personally I don't believe in EUPD/BPD. It's grouping too many different symptoms and life issues and reactions to those together where people within that umbrella really have no commonalities with each other other than being women and not conforming in some way. That shouldn't be a diagnosis. It's a cop out.

Thank you for that I will definitely give it a read.

It's interesting you don't believe in EUPD and see it as a cop-out. I obviously have a different having been diagnosed, having all the symptoms and benefiting from the treatment. I know lots like me too as we were doing DBT together. You say it is grouping too many different symptoms together, yet lots of us have them!

@HomeEdRocks18

My son has been diagnosed with EUPD but we have always felt like he has Autism. The psychiatrist has said he has several autistic traits that don't quite reach the level for a diagnosis. He also has a diagnosis of Mixed anxiety with depression, and PTSD from an assault. I don't think EUPD is the correct diagnosis for him, as from what I've read up it is caused from past experiences and trauma. He was born prematurely- which is the only trauma he's faced, he's 19 now.

I was born prematurely and I actually have a lot of trauma from that. You shouldn't dismiss it. You say he was assaulted too. My psychiatrist and psychologist told me that those with EUPD have differences in their brains too so according to them it is not just past experiences. However, I have heard of EUPD being misdiagnosed when it is autism. But maybe the 2 diagnoses are closer than we think?

OP please could you link to a source regarding the anatomical brain differences in EUPD?

I'd like to look at that.

Most people can benefit from counselling, group work, mind fullness, etc. That DBT helped you all does not mean you all had the same Brains beyond that human brains are all very similar and the brains of people who have been traumatised especially are very similar. What if instead of EUPD or some disorder what you're actually seeing is a normal human (female) response to trauma and not a personality disorder at all? Would DBT still help you? Absolutely it might. It also might not. But what happens is that instead of getting help to manage something which happened to you, you are told you are at fault. IME of trauma, anything which puts the onus on the victim of trauma as being to blame and not the perpetrator of said trauma increases the victims feelings of shame and isolates them from others, when the best response to trauma is connection and losing the shame and stigma. Some of those people may well benefit from the DBT group when it's on offer, but not everyone is able to or even offered DBT. It's hardly readily available to all. And it's sloppy prescribing when really a lot of people would benefit far better from trauma work such as an early intervention of EMDR or similar immediately after trauma, not the way it works with DBT where they want to see that the patient is stable first. I don't believe in EUPD/BPD because in Its very name it is saying that somebody has a disordered personality. So disordered that it seems to happen to a whole load of women? That's not a personality disorder, it's a misdiagnosis. It is pathologising the way that women react to trauma because it is not the same way that men do.

I don't know whether EUPD brains react massively differently to other brains (I doubt it somehow) but I do know that men and women's brains react differently. They work differently. And then we give women drugs to treat the condition when actually they need therapy. These drugs often restrict peoples abilities to process trauma, so essentially keep them sick. It's really not so different to the women who had lobotomy's a hundred years ago or so, or who were locked up by their husbands for being 'mad' eg. Non conformist or non compliant.

Disclaimer - not read the thread.

I have a diagnosis of EUPD. My therapist of many years said it was not a an illness, but was where there were certain pathways (and behaviours) made in the brain that got embedded over time... due to trauma or whatever. My own trauma happened after my diagnosis... although I witnessed DV as a child. She said the pathways/thoughts/behaviours were like footpaths on a hill. If you walk them many times, they become more embedded, and you sink into them. Therapy can teach you to try and walk another path, and eventually end up using it all the time (basically, use healthy coping mechanisms etc).

The more I read up on ASD in females, the more I relate. Although I am in my 40s, was under the MH system for years and they never brought up ASD, so I don't see the point in going any further on that path.

@bluegreygreen

OP please could you link to a source regarding the anatomical brain differences in EUPD?

I'd like to look at that.

I'll have a look

@AuntFlorence

Most people can benefit from counselling, group work, mind fullness, etc. That DBT helped you all does not mean you all had the same Brains beyond that human brains are all very similar and the brains of people who have been traumatised especially are very similar. What if instead of EUPD or some disorder what you're actually seeing is a normal human (female) response to trauma and not a personality disorder at all? Would DBT still help you? Absolutely it might. It also might not. But what happens is that instead of getting help to manage something which happened to you, you are told you are at fault. IME of trauma, anything which puts the onus on the victim of trauma as being to blame and not the perpetrator of said trauma increases the victims feelings of shame and isolates them from others, when the best response to trauma is connection and losing the shame and stigma. Some of those people may well benefit from the DBT group when it's on offer, but not everyone is able to or even offered DBT. It's hardly readily available to all. And it's sloppy prescribing when really a lot of people would benefit far better from trauma work such as an early intervention of EMDR or similar immediately after trauma, not the way it works with DBT where they want to see that the patient is stable first. I don't believe in EUPD/BPD because in Its very name it is saying that somebody has a disordered personality. So disordered that it seems to happen to a whole load of women? That's not a personality disorder, it's a misdiagnosis. It is pathologising the way that women react to trauma because it is not the same way that men do.

I don't know whether EUPD brains react massively differently to other brains (I doubt it somehow) but I do know that men and women's brains react differently. They work differently. And then we give women drugs to treat the condition when actually they need therapy. These drugs often restrict peoples abilities to process trauma, so essentially keep them sick. It's really not so different to the women who had lobotomy's a hundred years ago or so, or who were locked up by their husbands for being 'mad' eg. Non conformist or non compliant.

But that's what a personality disorder is. It is learned behaviours due to our situations which often include trauma. Of course it is 'normal' for us. Our brains may be different due to trauma or we may have been born with brains like that. Who knows? I have never been told I am at fault. In fact the opposite. I don't understand why you think it would be my fault that I have a mental illness. None of the professionals think it is my fault. The trauma most of us have been through is not our fault! Connection and losing the stigma is exactly what has been facilitated for me. The problem with going straight to trauma work is many of us can't cope with. That is why we do DBT as an inpatient. And there is much more to it than a group. Once we have learnt the skills it is so much easier to do the trauma therapy. Tbh, I think you have a very old fashioned view of what EUPD is. I agree the name should change as of course it is nothing to do with a disordered personality. I'm not saying some women have been treated like that in the past and now. But it is pretty much the polar opposite of how myself and my fellow patients have been treated.

I'm not sure there is a male/female difference. Of course men are discharged with EUPD. And many of the struggles are the same as ND people of both sexes.

As for medications. I'm not quite sure you understand how unwell we can be with EUPD. There should be no shame in treating our depression, anxiety, psychosis etc. Yes, we need therapy but without meds many of us wouldn't be able to access that and would just remain on psych wards.

I meant men are diagnosed with EUPD

@XenoBitch

Disclaimer - not read the thread.

I have a diagnosis of EUPD. My therapist of many years said it was not a an illness, but was where there were certain pathways (and behaviours) made in the brain that got embedded over time... due to trauma or whatever. My own trauma happened after my diagnosis... although I witnessed DV as a child. She said the pathways/thoughts/behaviours were like footpaths on a hill. If you walk them many times, they become more embedded, and you sink into them. Therapy can teach you to try and walk another path, and eventually end up using it all the time (basically, use healthy coping mechanisms etc).

The more I read up on ASD in females, the more I relate. Although I am in my 40s, was under the MH system for years and they never brought up ASD, so I don't see the point in going any further on that path.

That's a really good way to describe how unhelpful thoughts/behaviour get embedded. They were obviously our way of coping but learning new thoughts and behaviours is so helpful!

Yes, there is such a cross over. And it is those that have EUPD that seem to recognise it. It seems it is other people that want to claim it is just a trauma response. And to be upset for us that PD makes it sound like there is something wrong with our personality. I think those of us with EUPD are aware that is not the case, ime.

@bluegreygreen

www.psychiatrictimes.com/view/neurobiology-borderline-personality-disorder

This article came up when I googled.