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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask if you think eupd is stigmatised

56 replies

Happiestyearofmylife · 29/08/2021 13:45

Dd feels it is her worker said it might just be how she feels. I don’t know much about it so just wondering what other people though?

OP posts:
RavingAnnie · 29/08/2021 18:42

Yes it's massively stigmatised. Even amongst mental health professionals (possibly even more so). Some of the ways I've heard people with EUPD tested is appalling. This appears to be usually because behaviours are assumed to be manipulative. I think this is completely missing the fact that people with EUPD are in a lot of emotional pain rooted in trauma, and that is actually at the root of their behaviour. Any "manipulation" is a symptom imo.

immy784 · 29/08/2021 18:46

This thread is making me worry, I'm currently going through possible diagnosis of BDP and now I'm worried if it's the right decision

RavingAnnie · 29/08/2021 18:51

@immy784

This thread is making me worry, I'm currently going through possible diagnosis of BDP and now I'm worried if it's the right decision
Do you think you fit the criteria for EUPD?

Have you looked into the criteria for bipolar and ADHD? Both often misdiagnosed as EUPD.

Personally I would not want an EUPD diagnosis unless I was 100% sure that's what I had AND I felt the diagnosis would enable me to access treatment or support I could not otherwise access.

Imnewhere1991 · 29/08/2021 18:55

It is highly highly stigmatised. Have a look on twitter. Lots of posters with eupd being refused therapy, have the phone slammed down on them by the crisis team, refused inpatient help. They are seen as attention seeking and manipulative. My sister works with women with eupd and says often if one of them does something dangerous to themselves, the other women will too, as they can't deal with the attention not being on them. It is sad because it is attention they likely didn't get as children, but as adults no one wants to know.

My personal experience is that I was diagnosed with cptsd with possible eupd. I think the eupd came because I took an overdose small enough not to cause any harm but enough to be a risky behaviour. Was it attention seeking? Quite possibly. I can see that in myself. I know I can be manipulative too. So I can see why it is stigmatised in some ways.

StrangeToSee · 29/08/2021 19:01

Complex PTSD and EUPD are distinct diagnoses. There is some overlap though, in that both are rooted in trauma

Interesting. It’s a shame this info hasn’t reached psychiatrists and MDTs everywhere as I’ve worked in 3 different MH MDTs and staff always claimed CPTSD is a euphemism for EUPD, normally used when a person or family are rejecting the EUPD diagnosis.

EUPD is normally associated with trauma. However I’ve seen patients who present with more symptoms of Social Anxiety Disorder (isolative, low self esteem, difficulty engaging) being labelled with EUPD or ‘behavioural’.

Certain behaviours like head banging, self harm, endangering self through risky actions eg repeatedly climbing onto a bridge but not jumping off, or deliberate team splitting tend to be associated with EUPD if there’s no psychosis present. Although I’ve seen EUPD changed to ‘psychotic depression’ in rare cases.

MDTs tend to be more sympathetic if they think a patient can’t control their behaviour (eg bipolar disorder is obvious in manic state as the patient presents with mania, insomnia and often psychotic symptoms that can’t be faked. They may behave in destructive ways through disinhibition and inability to understand what they’re doing at that point. Whereas someone with EUPD may be destructive but easily calmed down or distracted, their moods go up and down throughout the day, eg they can be observed laughing and chatting with friends in the morning then trying to ligature by noon. EUPD doesn’t respond well to medications (usually) and therapy tends to be group therapy DBT or trauma therapy if appropriate.

Imnewhere1991 · 29/08/2021 19:07

@StrangeToSee I'm shocked by that. Do you believe that to be true as someone who works in MH?

Interesting. It’s a shame this info hasn’t reached psychiatrists and MDTs everywhere as I’ve worked in 3 different MH MDTs and staff always claimed CPTSD is a euphemism for EUPD, normally used when a person or family are rejecting the EUPD diagnosis.

Also, what's 'team splitting'? I was once told I splitted with staff but didn't know what that meant. Thank you in advance!

Siameasy · 29/08/2021 19:22

Yes but in my experience those with it can be extremely difficult

Bookridden · 29/08/2021 19:25

Would you know if you've been given this diagnosis? I ask because I've taken antidepressants for years to manage anxiety. It's mostly well controlled and I have very little interaction with my GP and few people outside close friends and family are aware. However, if this is a label routinely pinned on women with anxiety or intrusive thoughts, that worries me a bit tbh. Would a GP have to tell you if they diagnosed this?

Bookridden · 29/08/2021 19:30

Also, reading some of these stories is sad. I've been fortunate enough to never have felt the need to self harm or attempt suicide, but if someone is in such despair and need of attention that they do that... isn't it a good idea to give them that attention? I wonder if some people do these things because they really need support, someone to care, and dismissing it as "attention seeking" seems to belittle them.

Princessandthepeas · 29/08/2021 19:36

@Bookridden - You’d have to see a psychiatrist to be diagnosed, and yes you would know x

Princessandthepeas · 29/08/2021 19:44

@Imnewhere1991 - My interpretation of that would be, if a professional said to me “Be careful with this person because she has split teams in here before” would be a situation where a patient had previously provoked a nurturing and very protective response in some staff vs a group of other staff with firmer boundaries who were more distant and wanted to take a firmer approach, so that it starts to cause division and problems within staff as they disagree.

I was told “if you start feeling motherly towards her then you’ve got the response she wants you to have and it’s a sign you need to step right back” , regarding a young person with BPD/EUPD. Lots of advice about ‘boundaries of steel’ is given because of this perception of manipulation. But it is then really hard for the person because if they are surrounded by professionals who seem distant and switched off behind their ‘boundaries of steel’ , which doesn’t seem very human really.

fantastaballs · 29/08/2021 19:56

It is very stigmatised. I have bipolar and my daughter has EUPD. My own mental health worker commiserated with me about her diagnosis and said it's shame it wasn't a more "popular" label like mine. It's bizarre, people with bipolar are often seen as eccentric, intelligent, highly functioning ( I promise you that is NOT true 😂) for most of the time but EUPD sufferers are seen as manipulative, erratic and often abusive.

I actually one a woman that I met on a bipolar support group. She was convinced that she was bipolar and was awaiting a diagnosis . She was told she had BPD and she went off on one. Claimed it was like diagnosing her with Münchausen syndrome and they were conspiring to make her commit suicide from the shame. She asked for so many seconds and third opinions until she got the diagnosis overturned with a private psychiatrist. Then she was fuming because the DWP wouldn't accept non NHS evidence for a PIP claim.

celestebellman · 29/08/2021 20:16

Splitting is an unconscious process and one of the primitive defence mechanisms described by Freud. In patients with EUPD there is recognised to be a tendency to idealise or denigrate others in relationships (including professionals), ie no grey areas - also, this can oscillate (there is a book written by someone with EUPD called ‘I love you, I hate you, please don’t leave me’ which kind of sums this up).

Splitting in teams is well recognised, it is something which is not carried out consciously by the patients, but kind of reflects the internal process of idealisation/ denigration. Some staff may feel sorry for patient, maternal, wanting to save them, others will be more skeptical/ dismissive/ see manipulation etc. This is closely tied to the triangle of relationships consisting of abused, abuser and saviour, which are roles people who have suffered trauma and abuse often end up playing out in future relationships, including with professionals.

So in summary, patients do not deliberately split teams, it’s an unconscious dynamic which occurs. The word ‘manipulative’ does get used, I think people use it less now, although they may think it. It’s less acceptable to say - but the word ‘behavioural’ is used often, which is pretty meaningless as everything is behaviour. I teach medical students about EUPD, and we frame self harm / suicide attempts as communication of distress, not manipulation. We also teach about stigma and try to break this down, in part by involving peer workers in teaching.

You would not be diagnosed with EUPD by your GP. It really is not common to be misdiagnosed when the actual diagnosis is bipolar disorder -more often people with ‘bipolar disorder’ are subsequently rediagnosed with EUPD.

The one thing that I have noticed recently is, particularly women, with EUPD diagnoses being recognised as having autistic features and sometimes this leads to rediagnosis. It’s a small proportion though.

Imnewhere1991 · 29/08/2021 20:25

[quote Princessandthepeas]@Imnewhere1991 - My interpretation of that would be, if a professional said to me “Be careful with this person because she has split teams in here before” would be a situation where a patient had previously provoked a nurturing and very protective response in some staff vs a group of other staff with firmer boundaries who were more distant and wanted to take a firmer approach, so that it starts to cause division and problems within staff as they disagree.

I was told “if you start feeling motherly towards her then you’ve got the response she wants you to have and it’s a sign you need to step right back” , regarding a young person with BPD/EUPD. Lots of advice about ‘boundaries of steel’ is given because of this perception of manipulation. But it is then really hard for the person because if they are surrounded by professionals who seem distant and switched off behind their ‘boundaries of steel’ , which doesn’t seem very human really.[/quote]
Thank you for that definition. That is interesting. When I requested my notes it referred to splitting as I initially took a dislike to the psychiatrist and told someone else she made me feel worse and then in her notes to that woman she said stuff about 'preventing splitting'. Makes me wonder if they thought I had eupd a lot earlier than i was told (I was under the perinatal team and only upon my discharge was I told about my 'potential' diagnosis). I definitely yearned for the motherly type and ironically one of them did become motherly, even referred to herself like a mother figure (that I didn't have at that moment as my mum died when I was a child)...then suddenly when it's realised I've become too attached they suddenly take her away and she leaves the job. I worry I caused that as we were more like friends, but I know she was a mental health nurse...but she would stay later than she should, said she had hope for me 'not as a professional', commented on my home and style and seemed really invested. Then she was gone..that really hurt. In my discharge letter they said I had attachment issues..I did get overly attached and never got to say bye and that really hurts.

StrangeToSee · 29/08/2021 20:25

StrangeToSee I'm shocked by that. Do you believe that to be true as someone who works in MH?

Which part, that CPTSD and EUPD are the same condition? I’ve never really given it much thought as every MDT I worked in used the terms interchangeably. I knew CPTSD was more trauma-related; but then EUPD is almost always associated with trauma too so tbh I believed the more experienced staff.

Team splitting is an informal way to describe behaviour that divides the MDT (either deliberately or unconsciously) eg when a patient singles out certain staff as ‘favourites’ or ‘enemies’ then feeds them misinformation to confuse/upset/divide the team. Eg the person may dislike certain nurses and try to get them into trouble by claiming these nurses have behaved or spoken unprofessionally, yet tell a slightly different version each time. Or gain the trust of a sympathetic staff member (especially someone new) and claim they’ve been given permission to do certain activities when they haven’t, getting the staff member into trouble. Or they refuse to talk to anyone other than a few selected staff members, which frustrates the rest of the team who are trying to engage them and puts pressure on the selected ones who end up giving them extra attention as they won’t communicate with anyone else on shift. Spreading rumours about staff is another form of team splitting, especially if they’re started by one patient who convinces other patients which staff are ‘good’ and which are ‘bad’.
Team splitting may well be an unconscious behaviour, or stem from genuine paranoia about certain staff, but the effect on the ward can be very unsettling.

Imnewhere1991 · 29/08/2021 20:29

@StrangeToSee thank you for replying. Its interesting to hear your perspective. I guess it.makes a bit of sense as I was so against having a diagnosis of eupd and they said in my notes I preferred the term cptsd.

Ah thank you for explaining that. I definitely did that. 😳 I instantly got overly attached to a couple of professionals and dismissed the rest and I know I took up a lot of those twos time as I would only want to talk to them...I feel bad now looking back as all hell broke lose when they left.

pyjamas89 · 29/08/2021 20:40

I ended up with a diagnosis of EUPD on my records (I say ended up as there was no formal process, a psychiatrist decided that after meeting me for about 20 minutes when I was in crisis and I found out by being copied in to a letter to my GP. Nice.)

Some time later I was diagnosed as autistic and not as having EUPD - I understand it's common for autistic females to be misdiagnosed in this way. The shift in attitudes - for the better - once I lost the EUPD label from MH professionals was appalling to witness. The stigma surrounding an EUPD diagnosis is awful and as othera have said I think it is so often given when they aren't sure what other diagnostic box you tick.

BippityBoppity87 · 29/08/2021 20:46

@immy784

This thread is making me worry, I'm currently going through possible diagnosis of BDP and now I'm worried if it's the right decision
As a pp mentioned. I would honestly look into bipolar and/or adhd. I was diagnosed with bipolar in early 2019, but something still didn't feel quite right. I thought it was EUPD too. Asked numerous mental health professionals who told me no, that wasn't the problem and was just because I was still settling on my bipolar meds. Last year, I was told I had ADHD as well, which made so much sense and was diagnosed. On the surface is can look quite similar, particularly in women in terms of emotional dysregulation, RSD etc. Another one I've come across a few times in some fb groups I'm in is ASD too. Not saying it could definitely not be EUPD, but it's worth bearing in mind. A psychiatrist I'd imagine would go through all this though I'd imagine
OhWhyNot · 29/08/2021 20:53

It very difficult when teams split and I have seen more than one personbe able to split every team he works with but it’s even harder when you are dealing with the patients.

We can’t tolerate bullying behaviour but it sometimes happens by a person creating a split in the dynamics of patients.

We have to deal with that behaviour plus their feelings and those that are being bullied or singled out it’s very difficult to manage

ineedsun · 29/08/2021 20:55

Her key worker is being disingenuous, it’s widely recognised as being a diagnosis which carries stigma. Also out of order to attribute to your DD.

Imnewhere1991 · 29/08/2021 20:55

@OhWhyNot

It very difficult when teams split and I have seen more than one personbe able to split every team he works with but it’s even harder when you are dealing with the patients.

We can’t tolerate bullying behaviour but it sometimes happens by a person creating a split in the dynamics of patients.

We have to deal with that behaviour plus their feelings and those that are being bullied or singled out it’s very difficult to manage

Does patients favouring one or two staff members cause issues between the staff? I never really saw it that way as a patient. Selfish I know..
ineedsun · 29/08/2021 20:57

[quote Princessandthepeas]@Bookridden - You’d have to see a psychiatrist to be diagnosed, and yes you would know x[/quote]
Not necessarily. Obviously people should be told but I know of a few people who have found out by chance, by requesting access to records or someone mentioning it in passing at MDT meetings.

Spidey66 · 29/08/2021 20:59

Yes I think it is.
I'm a mental health nurse and tbh I think there is even some stigma from within services, though I think within the last 10 years this has improved. I admit myself I often had negative feelings but with experience and knowledge I'm much more sympathetic than I was say 20 years ago. Many of those I've met with the condition have had terrible childhoods, tbh I think a lot of the time complex PTSD is a better description of their difficulties.

Imnewhere1991 · 29/08/2021 21:01

@Spidey66

Yes I think it is. I'm a mental health nurse and tbh I think there is even some stigma from within services, though I think within the last 10 years this has improved. I admit myself I often had negative feelings but with experience and knowledge I'm much more sympathetic than I was say 20 years ago. Many of those I've met with the condition have had terrible childhoods, tbh I think a lot of the time complex PTSD is a better description of their difficulties.
As someone with eupd I KNOW deep down I am difficult. I have great respect and appreciation for people working with us as I know it must be frustrating.
Rosieandjim04 · 29/08/2021 21:24

I work on long term private inpatient ward for women, most of them have a diagnosis of EUPD and the NHS have moved them to us . Most women come in having taken frequent overdoses and minor self harm. They have their pictures taken on the first day , three months later they have permanently scarred their heads due to head banging , cracked skulls , they didn't do this behaviour before they picked it up when they came on the ward and learnt it from other girls these are young ladies late teens early 20s some in 40s but rarer.
.
Some take pictures of the self harm and share it with other girls on social media or on the ward. It's like a competition who can inflict the most harm on themselves. If one person ties a ligature it's like dominoes and most end up tying one.

It's very emotionally draining, we work long hours get hit and physically and emotionally abused. spend hours in holds I haven't had a supervision in months.

I am going to get flamed but I mostly choose to work on the male wards one is a secure ward (there's one female ward I like ) I find it very draining working on PD wards there isn't enough emotional or practical support for the staff.
I try to be compassionate as these women have been through so much but 13 hour shift no breaks and constant incidents is a lot for anyone to take.
You think someone is getting better and they are going to be discharged only for a major incident to happen and they are back 1:1 observations.

I only work on PD wards very rarely now as I get burnout.