I have Emotionally Unstable Personality Disorder AMA

[UndertheCedartree]

AMA

I was actually in my 30s when I was diagnosed. It was following a mental breakdown/being sectioned.

When you say you wish they could see themselves the way their friends see them, what do you mean?

It seems that although most have experienced trauma, it isn't universal. I know some people think it is just a misdiagnosis of cPTSD, but the fact that not everyone has experienced trauma suggests this is not the case as well as the brain differences. It appears that a child growing up invalidated is often the case and although that sounds like something deliberately inflicted on the DC I think it can simply be a case of the parent not understanding the differences in the way the DC is because of the brain differences. It will be interesting to see where the research goes in the next few years.

I didn't know that! I will have to check it out, thanks.

Thought it was the other way round, no longer borderline personality disorder

I really don't want this to be offensive op. I was a project worker and worked with people who had mental health issues. The people who had your diagnosis were often very manipulative and if I'm honest unpleasant. It was a while ago (10 years) so we were taking a person centred approach and quite progressive in our support. So I don't want you to think it was a 70s style approach. But obviously there could still be prejudices. However I still feel this seemed to be a bit of a feature of the diagnosis.

I always found it very hard to work out who was mental illness and what was personality with these clients. I suppose that's the nature of this diagnosis. Do you have you thoughts on this?

Thanks for sharing @UndertheCedartree

My sister has been diagnosed with EUPD. As a relative it’s been difficult but one of the hardest things is how one sided all our relationships with her are. I, my parents and brother have spent hours of our lives supporting her, talking her down, helping her pick herself up etc etc. we love her so obviously don’t mind but I also feel unable to share my worries and things with her as she takes them on and overthinks and becomes incredibly anxious. It’s led to a very one sided relationship and it often makes me sad.

DBT is completely different because it is very practical. But I don't know much about it being offered well in the community as I only know in my area it was awful.

What emotions are you particularly struggling with?

In my experience, if MH services know a patient has supportive family very little is done. I had this with my D-ex-H who has paranoid schizophrenia. I was having to deal with horrendous things and got no help whatsoever and DEx got very little input. This all contributed to me having my breakdown. They fell over themselves to help him, though! Luckily he was in a stable place by then so could look after the DC but he got a lot of help. In terms of DBT as an inpatient you do have to be very committed and engaged to be offered it as it won't work without that. But I agree it can be very hit and miss with getting help. In terms of medication I would have never have been able to get stable on medication in the community, I don't think. It took about a year to find the right medications and a bit longer to get doses right, I don't think I could have gone through all that (the awful side effects, some meds made things worse) without the intense support. I totally understand how you feel and I'm sorry you've experienced that. Best wishes to you all.

@UndertheCedartree thanks for the details about your DBT programme - was this on the NHS?

EUPD is the new name for BPD.

There may be a newer medicine that might suit your partner if they want to risk changing?

Thank you for those kind words, they really mean a lot to me.

That's frustrating because correct diagnosis can lead to correct treatment. Do you know why they won't diagnose? I'm glad meds have helped. They have saved my life, tbh.

I don't like the 'personality disorder' descriptor and I think it's quite old fashioned. When I was diagnosed the first thing I was told is it doesn't actually mean there is anything wrong with your personality! The thing is we think of a personality as quite set, but the maladaptive ways we think and respond to situations, we can make changes. So yes, I'd prefer something different - maybe just take the personality bit out.

@UndertheCedartree cross posted with you there - thanks so much for your kind words

If that is the case (no services if there's family support) that's really shocking to me - in our case family were the worst people to be in that role. I wasn't able to provide appropriate support, I can see with hindsight I inadvertently made things worse for my family member because I just didn't know how to handle it. So my "help" was no help and it adversely affected my MH too. The system is so broken.

Bless you for doing this thread.

Yes, that's right - it used to be BPD but now EUPD.

In my experience, these people who were 'manipulative and unpleasant' were probably not having their needs met and probably treated badly. Not on purpose but because of poor understanding of the condition. Perhaps written off from the start. I've had experience of that. I had a psychiatrist tell me I was only on the ward to get benzos! Just wrote me off and decided I was being manipulative. I've seen it a lot. It's really only starting to move beyond that recently. So 10 years ago I can well believe you treating people that way. I'm sure out of ignorance. EUPD is a mental illness and nothing to do with personality. There is nothing in the diagnostic criteria about manipulation. From my experience those who think it is 'personality' tend to be more judgemental as if the person has chosen it. I'm not sure exactly why.

I spent 2 years living with many other women with EUPD. Yes, a few were unpleasant, I remember one being quite manipulative. But the vast majority were amazing, sensitive souls who'd been through so much. They were non-judgemental, kind and caring (often too much.) They were so incredibly supportive of their fellow patients and staff alike. We often threw fabulous parties for staff who left! Many were very intelligent, many were talented in all sorts of ways. Most had experienced severe trauma. I had some of my best and worst days with those women. I'm still close to some of them many years later and they make very loyal friends.

What is the single thing that a parent could do to help you OP? My now adult child was diagnosed with BPD and our relationship is now great (they take medication and have therapy) but sometimes I feel like I have no clue if I’m doing this right. She struggles with the label, I think it feels like a life sentence to her.
Like a poster above said, I wish she could see herself through my eyes; wonderful, smart, caring, loving and loveable.

That does sound very sad, I'm sorry. I have a relationship like that so I understand. I would like to think your sister appreciates all your support. I've never had any support from my family which is quite common so it is often the women with EUPD that are supporting everyone else as we never want anyone else to feel as lonely as we do or to hurt like we do. Has your sister had any treatment?

It was at a private hospital funded by the NHS.

I really relate. I had no idea how to deal with my ex. And in hindsight I can also see there were times I made things worse. And as you say the knock on effect is awful. It is shocking but I think services are so cut back due to not enough funding, they just divert the help to people who have noone. I was so annoyed when I saw the support ex got (obviously I was pleased he was given support) but I had a baby and a toddler and a severely unwell DH who due to his delusions was being abusive, was acting very dangerously, was violent, I could barely sleep as had to look after him all night and then the DC all day. Noone was interested in me or the DC atall.

@Turkeyhen and thank you for being so kind. It really means a lot.

Oh, wow, that's so lovely! I'm glad you have such a good relationship and I think that is testament that you are doing it right! Remind her of those things you see in her as if like me she will often feel worthless. The fact you are interested is wonderful. My parents aren't interested which I've found hard. The only comment I've had is about the weight the medication has made me put on and if I can change the medication due to this!

One of the things I struggle with is the fear of abandonment. Just telling your daughter you will always be there will mean so much. Doing mindfulness activities together would be great too - whatever you like, colouring, puzzles, drawing, guided meditations off you tube.

But the main thing is just hold her tight, tell her you love her and she isn't alone ❤️

Do you question why bipolar disorder and eupd are treated so differently by a majority (in my experience) of mental health professionals? I was diagnosed with psychotic depression and bipolar disorder and treated as though it was an illness, although I was sectioned constantly.

I moved to another health district, clashed with new psychiatrist and was labelled with 'bpd' (as it was called in the 90s), and as a result of that diagnosis I was treated as manipulative and not worth helping. I got really sadistic treatment.

move on again, return to bipolar diagnosis and moral judgement disappears. My treatment is far from perfect but I am not mistrusted and blamed.

Psychiatry is is no way scientific and precise.. You are diagnosed by the drugs that work for you as much as by your cluster of symptoms. EUPD as some common features with bipolar disorder. However there are currently no drugs marketed for personality disorders. When they arrive (by accident because psychiatric conditions other than depression are not a big money spinner), psychiatrists will begin to treat EUPD patients as ill rather than attention seeking and manipulative individuals.

Having been in the system since a teenager and watching the advent of care in the community while on many sections, I have observed the contradictions in the 2 diagnoses and also the sexism displayed in the diagnosis of EUPD.

Why do you think EUPD is related to ND than to other mental illnesses?

It is amazing how little is known about mental dysfunctions, apart from their preponderance in certain families and the multiple dna combinations that might with a level of trauma ignite the condition various and inexact conditions.

and since ASD and ADHD are common in families also containing individuals suffering from bipolar and possibly schizophrenia, I do not understand the separation of ND from mental illness, the categories seemed arbitrary and more related to social mores and absence of input from pharmaceutical companies, than of educated scientific distinction.

This thread is interesting, thank you. My dad has eupd and we have been no contact for 20 years. I wish he would have been open to the help like you have. I know there's not a lot of it, but it seems you have taken what you can get. X

I think in the past personality disorders were not considered mental illnesses and were perhaps seen as a moral failing. As you say the treatment can be awful and you can be completely written off.

I believe things are slowly getting better with medications being used to treat symptoms and therapy being offered.

EUPD has features like ASD of differences in the brain. It seems to me to be a completely different way of thinking. I think if you add in trauma and/or invalidation you can have a very unwell person, but I feel it is something you always have to use skills to cope even once stabilised with medication and therapy.

It"s an interesting debate and as you say could include other mental illnesses too.