To think these not a lot of treatment for eupd

[Sevendaysaweek]

Ds1 20 has been diagnosed with it. They have basically said it’s chronic condition and he won’t ever fully be better. All the things I’ve read online seem to be negative about this condition. Aibu to ask for views and positive stories.

YABU...Unfortumately its up.to your son to attend therapy and take medication. However, due to the disease most diagnosed think they don't need the therapy and medication and go off the rails. Its a constant merry go round of emotions and crap. I haven't spoken to the EUPD person that was in my life for 22 years. He lives 10 minutes a way now. If zi see jim I ignore him and he has only met 1 of my children

I was diagnosed in 2010 with 'certain traits' of EUPD as well as Schizoaffective disorder.

My psychiatrist now says he feels the EUPD diagnosis is not relevant to me as I've become more self aware & more able to regulate my emotions.

I don't self harm now although I occasionally feel suicidal due to the other disorder.
I have had some therapy but to be honest I think the meds I take for the other disorder have had the side effect of calming down my emotions, also I've matured a lot in ten years! So the traits are no longer an issue.

A real success story is my colleagues daughter who at 20 was self harming daily with multiple a&e admissions; she then had Dialectical Behavioural Therapy for EUPD & now has not self harmed for 2 years!
It has changed her life & her mums life.

So I think really try to get him on a list for DBT if he's open to the idea but he has to really want to do it.

Medication and DBT have made a huge difference to me to the point where my psychiatrist says I’m in remission from it (I also have bipolar that isn’t quite as well controlled hence the psychiatrist).

@Leaannb

YABU...Unfortumately its up.to your son to attend therapy and take medication. However, due to the disease most diagnosed think they don't need the therapy and medication and go off the rails. Its a constant merry go round of emotions and crap. I haven't spoken to the EUPD person that was in my life for 22 years. He lives 10 minutes a way now. If zi see jim I ignore him and he has only met 1 of my children

It's great saying it is the son's responsibility to engage with treatment when no treatment is being offered!

Yes, people can and do recover from what is labelled as EUPD. I would look at as many sources of support available outside the NHS as well as in it since NHS care is often severely lacking.

What Terralee says is vital. The interventions are about supporting someone to learn self awareness. The onus is on them to access and apply these skills for managing intense emotions and we're lucky to live in a country where there is help for that free on the NHS!

Both DBT and schema therapy can help hugely. I wouldn't lose hope until he's given one of them a really good go.

You're not being unreasonable- mental health help is generally scarce and too many professionals write off EUPD as untreatable, whereas charities like MIND tend to shy away because it needs intensive professional help.

I can tell you that if the help is made available- long term (as in a couple of years) regular talking therapy (NOT counselling or other milk-and-water GP offerings), yes it can be overcome. My personal experience of this is with my daughter, who was lucky enough to have her records catch the eye of a therapist who wanted to work with young people intensively for a couple of years before her retirement. It really was luck though. Before that she had years of art therapy and other group courses which kept her busy but didn't solve anything.

This is something you're going to have to fight for, if your DC is ready to do the work. It is horribly draining and frustrating and heartbreaking to have your wonderful child written off again and again and often the professionals feel just as bad having to admit they haven't the funding or aren't allowed to refer them for the level of treatment they need. But when you do get it and it's done and your child is functional and happy it will be more than worth it.

YANBU. It’s a tough diagnosis. As others have said DBT and schema therapy are the best bet. But I know it’s a real post code lottery though with personality disorder services

Oh and medication may take the edge off but won't do a lot and isn't desirable for EUPD patients (which is another problem when applying for PIP where you're having to say 'yes I have a serious mental illness but I don't receive any meds for it').

DBT is supposed to be good and is a bit easier to access than full on therapy, so definitely a good goal to aim for initially.

I'm afraid you're also going to see a lot of negative comments about EUPD sufferers as well. Liars, drama queens, selfish, unreasonable... all completely dependant on the sufferer's presentation in actuality. My daughter has always been the kindest, most generous and selfless person I have ever known (and if you knew my mother, you'd know what a great compliment that is to my daughter). In fact it is those traits that have caused her the most trauma with people taking advantage!

DBT was designed by a doctor with EUPD and is highly thought of so I agree you should ask for it.
There isn’t medication for EUPD per se as it is a personality disorder. But EUPD often can cause comorbid conditions like clinical Depression and PTSD and cPTSD. So if a person with EUPD has these conditions, or even symptoms of them medication for these other conditions really does help. Some doctors dismiss this though. They think that EUPD means you can’t really be depressed you’re just being dramatic and threaten suicide to get attention. That you can’t get PTSD or cPTSD, you’re just over sensitive.

You need to fight to get a good psychiatrist who understands EUPD and how vulnerable they are really to other serious MH conditions and that helping those conditions and DBT done in a individualised care plan can then help them have a good life.

@Leaannb

YABU...Unfortumately its up.to your son to attend therapy and take medication. However, due to the disease most diagnosed think they don't need the therapy and medication and go off the rails. Its a constant merry go round of emotions and crap. I haven't spoken to the EUPD person that was in my life for 22 years. He lives 10 minutes a way now. If zi see jim I ignore him and he has only met 1 of my children

Well to be fair, the therapy offered 22years ago was CBT and it not only did not work for EUPD sufferers but made them worse. The medication choices were not much better. Lots of addictive mood altering ones.

My son would definitely have the treatment all they have hear is 12 week dbt program.

The one treatment they’ve found successful is DBT but you often have to go private for that.

Group therapy can help, as can mood stabilisers, anti depressants, schema therapy and firm boundaries around behaviour.

EUPD is very common. They try not to admit people to hospital with it as it’s thought hospital environments make it worse. Giving attention to certain behaviours (eg self harm, threats) can worsen it too.

Unfortunately personality disorders like EUPD aren’t always taken seriously by medics so it’s worth searching for a good doctor or therapist.

The good news is it tends to improve with age!

I was diagnosed with BPD 3-4 years ago after probably living with it for the best part of ten years prior to that. I was lucky to have a very kind and sympathetic GP, but I was told pretty much the same thing - that it was a lifelong condition and there wasn't much they could do apart from treating the depression elements. Now I would describe myself as completely better and haven't had an episode in about 15 months (which feels like a lot longer given all the shit that's gone on this year!) For most of my 20s I had them about once or twice a month.

I never had any specialist treatment because it wasn't available in my area. I had many rounds of counselling, which I hated and didn't find helpful at all, and was on antidepressants for a couple of years, which helped with the depression symptoms but not with the underlying disorder. To be honest I can't really explain what happened - I had a few fortunate life events that improved my general situation, and other than that it more or less went away on its own. So YANBU to think there's not much treatment out there, but that doesn't mean it's impossible to get better.

I realise my experience isn't very helpful in terms of practical advice ("just wait ten years and it might sort itself out..!") but hopefully it's a positive story at least I've heard really good things from people I know about DBT so may be worth looking into getting it privately if it's not available on the NHS where you are.

That you can’t get PTSD or cPTSD, you’re just over sensitive

cPTSD (complex PTSD) is just another term for EUPD, when there’s been trauma of some sort involved. It has less stigma than EUPD so a lot of patients prefer cPTSD as their diagnosis rather than EUPD.

PTSD is very different condition.

My DD has EUPD and it's pretty much the same story. Her psychiatrist said she needed to do DBT (which she's not really engaged with) and she's also on medication.

She's doing OK at the moment but the next time something goes wrong all hell will break lose.

I'm told though that after 25 things improve, and I've spoken with somebody with EUPD who is living a normal life at the moment after therapy.

Don't go reading stuff online. It's a very misunderstood diagnosis and there is a lot of previous stigma surrounding it. There is treatments and the recovery/remission rates are very high for people engaging in treatments, often over 80%.

I struggled a lot with it during my teens and early twenties but I have no longer met the criteria for it for several years now.

She needs therapy, CBA or DBT, sometimes CAT works (It's what I had). Don't lose hope, the next few years may be a huge struggle for both of you, but there is definitely light at the end of the tunnel if you are both willing to put the work in.

I was diagnosed 8 years ago and things have improved a lot for me since then. I had schema therapy which really helped (although it was hard work and there were very rocky times during that). I also did a dbt course which was great.

I think eupd for me is a chronic/lifelong condition, but life is so much better now than it was. I haven't self-harmed or attempted suicide for years, which would have been unimaginable for me at my worst. Yes it's always going to be something I have to work on, and I think there will always be limits on how much day-to-day stress I can invite into my life, but I now have a quality of life I couldn't have dreamed of 8 years ago.

It can be challenging accessing the right help on the NHS, but all I can recommend is trying hard to engage with anything they offer (and obviously if you happen to have health insurance, look into what you could get). 12 week dbt program sounds like a good start.

Your son is lucky to have such a supportive parent.

cPTSD (complex PTSD) is just another term for EUPD, when there’s been trauma of some sort involved. It has less stigma than EUPD so a lot of patients prefer cPTSD as their diagnosis rather than EUPD.

I really don't agree with this,. I have friends with EUPD and friends with cPTSD and they certainly have things in common (very traumatic backgrounds) but their conditions/situations are really very different.

And I have cPTSD. I have experienced complex trauma (i.e lots of it and lots of different types), have relationship difficulties (in terms of I keep away from forming them out of fear of people), anxiety, physical symptoms caused by trauma, previously have had suicidal thoughts. I have been tested (thoroughly) for personality disorders and definitely don't have one (not my opinion, that's the opinion of professionals). I don't have difficulty controlling my emotions, have no experience of self-harming, I'm not impulsive (the opposite), have no overwhelming issues around being abandoned or issues around changing how I feel about friends. I maintain friendships easily which the people I know with EUPD certainly don't, generally.

Don't get me wrong, I think there can be a lot of cross-over between the two conditions but the opinion of my highly-experienced psychologist is that lots of people are diagnosed with EUPD when they really have cPTSD. He teaches at one of the best universities in the world, he knows his stuff about them being separate conditions.

@RattleOfBars

That you can’t get PTSD or cPTSD, you’re just over sensitive

cPTSD (complex PTSD) is just another term for EUPD, when there’s been trauma of some sort involved. It has less stigma than EUPD so a lot of patients prefer cPTSD as their diagnosis rather than EUPD.

PTSD is very different condition.

cPTSD is not another term for EUPD.

The confusion comes from the fact that some people, (usually women because medicine is a bit sexist still), are initially misdiagnosed with EUPD when they actually have only cPTSD. You also can have cPTSD without EUPD and vice versa. I suggest you read up on cPTSD in the ICD-11 and EUPD in the DSM 5 so you can see that while there is a bit of overlap in symptoms, (ie emotion dysregulation) even these are expressed differently and are two very different conditions.

In addition, PTSD is not very different from cPTSD, over 90% of people with cPTSD also meet the criteria for PTSD which is why cPTSD isn’t in the DSM as a separate condition (yet).

cPTSD is not another term for EUPD

It is according to all the psychiatrists and the MDT where I work. But I may be wrong and it means different things to different people.

And I have cPTSD. I have experienced complex trauma (i.e lots of it and lots of different types), have relationship difficulties (in terms of I keep away from forming them out of fear of people), anxiety, physical symptoms caused by trauma, previously have had suicidal thoughts. I have been tested (thoroughly) for personality disorders and definitely don't have one (not my opinion, that's the opinion of professionals). I don't have difficulty controlling my emotions, have no experience of self-harming, I'm not impulsive (the opposite), have no overwhelming issues around being abandoned or issues around changing how I feel about friends. I maintain friendships easily which the people I know with EUPD certainly don't, generally.

I appreciate what you’re saying and I’m sorry you’ve had such a rough time. There is indeed overlap.

But people with EUPD don’t always have difficulties maintaining relationships and friendships, many have no abandonment issues (there’s another type of personality disorder ‘dependent PD’ where abandonment fears are overwhelming or dominant), some control their emotions or avoid situations that cause emotional responses, or mask their emotions. Not all self harm either or take risks.
Suicidal thoughts, fluctuating anxiety/depression, and dissociation caused by trauma are often symptoms of EUPD.

I’m not saying your diagnosis is wrong, just that many HCPs consider C.PTSD another term for EUPD. Not so long ago EUPD was known as Borderline PD but changed due to the stigma and negative associations.

IME cPTSD is often given to patients who reject the idea of an EUPD diagnosis.

I have EUPD. Was diagnosed when it was called borderline. Much prefer borderline to emotionally unstable.
When you hear emotionally unstable your thoughts automatically focus on the negative. Not really a good name for a group of people who also have bouts of clinical depression, self harming etc.

You name it, I've tried it. I'm in my mid 40's now. It's never fully gone away, just the mask I wear most of the time disguises what's really going on.

I also have a separate diagnosis of cPTSD in addition to some other mh and personality stuff.

@RattleOfBars

cPTSD is not another term for EUPD

It is according to all the psychiatrists and the MDT where I work. But I may be wrong and it means different things to different people.

Not according to the psychiatrists and psychologists I’ve seen in US, UK and France. If it were the same condition, they’d not be listed as separate conditions in the ICD-11 now would they?