To think people with eupd are badly treated

[Nownow8]

Like people say we enjoy being in hospital and our illness isn’t a real mental health issue etc. we are also often left under the Gide of positive risk taking it’s just awful.

@Naytr33 Which is why I said that I am definitely no expert, I wasn't aware of the link with ASD/ADHD, but that out of the dozens of people I have met with it, most end up disclosing childhood sexual abuse. I'm very open to learn.

Is there any treatment?

Health professional and struggle with this diagnosis too.
Once the diagnosis is made it has an awful effect on the care the person receives.
I think most people have EUPD until they ate about 30!
Almost always the person has a history of an awful upbringing and trauma and usually sexual abuse.
I had an awful childhood which left its mark and despite on the outside , doing well, professional degree, I think I could have received this diagnosis in my 20’s .
I really feel for people in this situation.

I have EUPD and yeah the treatment is pretty shocking, even more alarmingly in the mental health awareness training at the NHS trust I work for the EUPD section carried a warning for staff members and the example was of a patient focused on them complaining about services.

I'm 49 and was lucky enough to receive good therapy on the NHS 25 years ago, the therapist who worked with me went on to develop a DBT programme.

I am on an array of meds now and am much more stable and I have learnt to manage my emotions more - but still find life pretty exhausting.

I work in inpatient mental health and unfortunately I agree. I never realised there was such a stigma about mental health in general until I started this line of work. To quote another staff member “if someone wants to … they would just do it”, however this particular individual has less compassion than a angry toad. It’s not an uncommon attitude though, albeit reductive and harmful.

Unfortunately ’death by misadventure’ is now a more commonly used term. It’s seen as accidental in a bid for attention. Cptsd is (unofficially) seen as ‘basically the same thing’ and still refer to those patients as eupd patients.
Nurses and Hcas often disagree with the psychiatrists (amongst themselves) when they don’t diagnose someone with any personality traits they don’t like with eupd. Almost all patients with a neurotic illness (so not psychosis/mania) are discussed as eupd patients. Signs of or diagnosis of sen are also dismissed as an influence at times (not by psychiatrists). This could just be the culture of where I work though and is just my experience not fact.
I do understand why to some extent, patients with eupd aren’t suited to an inpatient environment and often behaviours can get worse.
I can understand the frustration as sometimes there’s no incidents, sometimes the patients feed off of each other and there are back to back incidents during a shift which is extremely challenging for staff too. Positive risk taking can be scary for the patients but does often work. It’s a very tricky balance for staff supporting patients between validating and not feeding into the behaviours which make things worse, and being invalidating which can also make things worse and retraumatising. There is mixed understanding of trauma. Some staff are compassionate and understanding of how traumatic experiences can impact a person in the here and now, others see it as a tick box preceding conditions but still take care to avoid triggers. Those caring for patients day to day like nurses and hcas don’t have the level of theoretical understanding psychiatrists and psychologists do (although think it at times) but are the ones directly supporting with behaviour.
Looking to get out tbh because of the culture.

What is the effect on treatment? I dont understand why my dd has got the diagnosis then as bar her hospital stays at 15 there are no environmental factors. No abuse.

Yes. It's one of the main reasons I took myself off the RMN register. All this "they know what they're doing, if they kill themselves by accident while doing it, it's not our fault" nonsense. No compassion whatsoever. And if you don't fit the "cured in 12 months" box for the NHS, you've got no hope because the Trust won't get paid for you.

On the other hand, I had a friend with a diagnosis and she would talk about her next admission with glee and threaten to overdose if you didn't do what she said all the time. But like everything, it's a spectrum and some people will always give others a bad name.

I totally agree that people with this diagnosis encounter huge amounts of stigma and discrimination.

Very crudely the bio social model is quite widely accepted as a way of understanding this diagnosis. So a mixture of nature and nurture leads to this particular set of challenges. That some people have predisposition to emotional sensitivity, combined with growing up in an invalidating environment. Think of perhaps someone who is gluten intolerant growing up in a household of keen bakers. This doesn't mean that it is anyone's fault!

I do know that some areas have some very good therapy available albeit with long waiting lists. It is also a diagnosis that someone can loose too. It isn't necessarily a life long condition.

Marsha Linehan who developed DBT described having BPD/ EUPD as the equivalent of living with emotional 3rd degree burns. IMO it's a powerful metaphor.

I think some of the stigma might be based on the fact that it is within the Cluster B set of personality disoders in the the DSM-5, and you need to have five of the nine conditions below for a diagnosis. Number 2 is indicative of narcissistic traits and so there might be over represented in a hospital setting and so influence the perception of other patients in a negative manner perhaps?

1. Frantic efforts to avoid real or imagined emotional abandonment.
2. Unstable and chaotic interpersonal relationships, often characterized by a pattern of alternating between extremes of idealization and devaluation, also known as 'splitting'.
3. A markedly disturbed sense of identity and distorted self-image.
4. Impulsive or reckless behaviors, including uncontrollable spending, unsafe sexual practices, substance use disorder, reckless driving, and binge eating
5. Recurrent suicidal ideation or behaviors involving self-harm.
6. Rapidly shifting intense emotional dysregulation.
7. Chronic feelings of emptiness.
8. Inappropriate, intense anger that can be difficult to control.
9. Transient, stress-related paranoid ideation or severe dissociative symptoms.

And surely the treatment should be individually tailored to reflect the specific combination of symptoms that are present in each patient and the specialists should be able to distinguish between different patient characteristics? It does sound like a very emotionally painful disorder to live with.

My DH has this. And yes, he is treated badly in hospital etc. but it's more to do with history of addiction. I think people with it find dealing with authority figures and restrictions more difficult.

Following as my friend looks likely to be diagnosed with this

In my opinion the behaviours are stigmatising in themselves and so the name doesn't make any difference. Most people won't still warrant the diagnosis after a decade do in that sense the prognosis is positive compared to other illnesses. DBT is the best treatment but is very hard to do and needs reflection which can be difficult. I've never seen it misdiagnosed with ASD bit frequently see it comorbidly and with a worse prognosis as the fixed thinking style makes dbt harder.
I also think that the lack of compassion is due to burn out and feelings of blame in staff.
Unfortunately human behaviour cannot be reliably predictable meaning you will always make a decision which doesn't prevent a suicide. And hospitalisation can make the condition worse. So what do you do?
Also weight restoration would be needed before therapy if coexisting with an ED

I struggle with this - not because I don’t think it’s accurate - but because I don’t believe the stigma will be shifted. It wasn’t shifted when it was renamed from BPD to EUPD or cPTSD. The discrimination within services remains, the underlying issue doesn’t change with the diagnosis. It’s a real problem.

I believe part of the stigmatisation is due to the fact that most people with EUPD are female. There are frequent posts on social media telling us that male suicide is a terrible thing, which it undoubtedly is, but I've never once seen a campaign to promote awareness of the fact that more suicide attempts are made by women than men.

Some of the stigma is historic - when I was training we were always told to avoid EUPD clients. It did not sit well with me, and I went on to fund myself to do extra training in how to work with EUPD effectively.

Some is practical/structural. EUPD clients are often lovely, but are complex, challenging to work with and have the highest level of risk than any diagnosis. Many services are set up on the expectation of fairly short term treatment which EUPD does not respond well to. If I knew I would be able to refer someone to the CMHT teams quickly if they needed it, I would not think twice about taking clients on with this diagnosis. But increasingly it is next to impossible, so you can be left trying to support someone with no back up, which is stressful and worrisome as well as being dangerous. If someone dies while in treatment with you, the inquest process is blaming and often unfair - clinicians often get hung out to dry and some never manage to work again. Time and again the failings of the system are pinned on individual workers. So some of the stigma/attitude is due to these difficulties. It is not right, but people who work in MH are only human too.

It's a very, very difficult condition to live with, deal with and treat.

I'd say the most difficult. EMDR or DBT are probably the most effective but hey, good luck getting it.

They're not likeable people. Sorry, it's true.

I'm tired of trying to get them help. Nobody will take them on even when it's at crisis point.

CMHT refuse most referrals. Does my head in

The characteristics are very similar. They're needy. They're often cruel, they do horrible things. They have suicidality. They're manipulative. They will suck the soul out of you. They're often recidivist.

This is not me being horrible. These are the traits. We are NOT horrible to them and we don't treat them badly. It's almost impossible to help them. And it is rife.

We don't have the resources.

I would agree that people with EUPD get a hard time, and perhaps people avoid involvement with people based on the label. I have been guilty of this myself due to my own experiences and my own mental health. I cannot be around people with EUPD though.

I think the term eupd is likely to attract more judgement and prejudice than bpd.

What a nasty bullshit post. There is a range of traits and you don’t need them all. My daughter is not needy,cruel or manipulative and does not do horrible things- ever. Bar trying to take her own life which she can’t help.She is a kind girl who loves animals and hates upsetting anybody.She is anything but needy and is unable to advocate for herself. She doesn’t bother anybody and services( who diagnosed her) are working hard to try to get her to share her struggles more. She has a good relationship with services who seem to care a lot for her.

I despair if your attitude is the prevailing one amongst services. Maybe some sufferers are recidivist because of the lack of treatment and staff like yourself.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/about-bpd/

I have "scored high" in a referral made for BPD to talking therapies. They gave me CBT which didn't help after waiting 36 months on a waiting list. To see a psychiatrist will be a 3 year wait.
I attend recovery college to do DBT which is far more helpful.

This blame culture for such a complex condition is just abhorrent. How can any clinician or group of clinicians overcome such powerful disorder? My sister was diagnosed with schizophrenia and she took her own life whilst she was an inpatient who had been allowed out on a short release under the care of my mum. It was harrowing and devastating but at no point whatsoever did I think that blame should be placed on the medical staff.