EUPD and cPTSD - feeling helpless

[XioXio]

Last week I was diagnosed with EUPD and cPTSD. She said she'd write to gp but won't have it as an official diagnosis as she wants me to think about it and for it to sink in due to stigma.

What stigma is this? I'm really not familiar with personality disorders and cPTSD.

No support was offered other than increase anti depressants, eat healthy, healthy lifestyle, contact a charity for therapy. She did say she appreciates it's hard to eat healthy with my disordered eating but there is no support for that on NHS. Only if it's bulimia or anorexia.

I'm feeling rather helpless and hopeless. Having read more about it it seems things can get before me but I'll struggle all the time and have to keep working hard just to function in day to day life.

I have the same diagnosis, EUPD and CPTSD.

There is a lot of stigma around personality disorders, including (or perhaps even most prevalently) from mental health professionals. I believe part of the reason the name for EUPD was changed from its previous name of Borderline Personality Disorder (BPD) was because of all of the negative connotations around it.

In my experience some of the stereotypes around people with BPD are that we are histrionic, attemtion-seeking, unstable/ volatile, manipulative, over sensitive, angry, unable to form successful relationships, that we exaggerate our feelings, that we are unwilling to change, that we just need to grow up or try harder to be okay and that we will be resistant to treatment. I was devastated to get the diagnosis of EUPD/ BPD because I didn’t most things I had read about it reflected who I am and because there is so much stigma around it.

I don’t know of any stigma around cPTSD aside from it being a relatively newly recognised diagnosis (and still not universally recognised) and so some people still do not believe it to be a valid diagnosis.

Yes, I think she meant stigma for EUPD rather than for both.

"we are histrionic, attemtion-seeking, unstable/ volatile, manipulative, over sensitive, angry, unable to form successful relationships, that we exaggerate our feelings, that we are unwilling to change, that we just need to grow up or try harder to be okay and that we will be resistant to treatment." I really don't want people to see me that way :-(
Although I do feel like I should try harder, I always feel I should be doing better than I am

DBT (Dialectical behaviour therapy) is recommended for EUPD as well as things like ADHD. It would be worth asking for a referral for this. There are a variety of therapies for trauma including EMDR. Try and see this as the beginning of a journey towards getting to know yourself better x

I will ask my GP about DBT, thanks for suggesting. If the NHS is a no go my mum has very kindly offered to fund it for me if I find someone privately.

I'm waiting for an appointment for an ADHD assessment - it's about 6 months away.

I feel that the EUPD diagnosis is correct but not so sure on the CPTSD, I don't see as much correlation between myself and the diagnostic criteria so I won't investigate the EMDR yet but it's good to know it's an option for trauma.

Thanks :-)

I’m a MH nurse who works almost exclusively with people that have EUPD/cPTSD. Who made the diagnosis? There’s a fair amount of help available on the NHS, depending on presentation and severity, usually available through the CMHT, and the person who made the diagnosis (usually a psychiatrist) should be able to refer you.

I was diagnosed by a psychiatrist with the CMHT and they basically said they were going to discharge me as there isn't any help on the area for me.

If you are waiting for an ADHD assessment and not sure if EUPD fits, it may be worth asking about an autism assessment also- women with undiagnosed ASD are regularly misdiagnosed with EUPD/BPD- it happened to me and just didn’t feel “right”.

When I got my ASD diagnosis, it felt that everything slotted into place.

When the referral was made 4 months ago I was in a really bad way and I wanted to die, I was so majorly overwhelmed with life, with everything I just couldn't function. But between then and now I've scraped myself together so that I am outwardly presenting as functional. But every day is a struggle, my moods fluctuate, I get angry and boil up inside, I feel overwhelmed and I shut down and have to shut myself away until I feel better. I find it impossible to keep on top of housework or self care.

I guess the unfortunate fact is there are people who are worse off than me who need the help that the stretched NHS can provide.

@user1471548941 thanks, I had heard that women can be misdiagnosed as EUPD when they are actually ADHD and or ASD. I think I'll wait for the outcome of the ADHD assessment before I consider another assessment! I find them really rather stressful.

I think I have some asd traits, but perhaps it enough for a diagnosis. But that said I'm no expert.

I think EUPD plus ADHD could explain the way I am quite well. More ADD than ADHD.

@user1471548941 did you receive any help after your EUPD diagnosis?

I'm glad you now feel you have the correct diagnosis.

What help is available? I have the same diagnoses as OP and other than being sectioned multiple times (for approx 24 hours each so no therapy involved) as I was at immediate risk of suicide/self harm I've basically been given some.pamphlets for charities and the number for the mental health crisis team.

Maybe it differs according to where you live but the help just isn't there (God knows I've tried!).

Hope you have more luck OP x

Another one here diagnosed with BPD in my 20s in my 50s diagnosed with ASD and cPTSD and very likely ADHD

The assessments are so stressful- particularly in an area where the knowledge/research is not actually straightforward and often influenced by the opinions of the professional.

Wishing you all the best on your journey- the Neurodiverse board is very friendly and helpful if you just want to read other’s experiences. I find it very comforting and validating to read about other people experiencing the same as me.

What medication is your psychiatrist suggesting? There’s a lot that could potentially help eg quetiapine. In terms of therapy, have you explained how much you’re struggling? In my trust we offer “emotional coping skills” to everyone newly diagnosed with EUPD and full DBT to those who are more acutely unwell, as well as “stabilising” work one on one with a CPN.
I feel that we have something of a duty to offer help to those with an EUPD diagnosis as many local CBT/IAPT services won’t accept referrals from people with an EUPD diagnosis full stop. That can mean that if we don’t support them then no one will.

It might be worth investigating neighbouring NHS areas and if they offer DBT, you can then seek a referral under ‘patient choice’. There would likely be a waiting list etc (and you’d have to travel - don’t know if that’s possible) but worth a try perhaps. I’m really disappointed - angry really - there is nothing for you locally. DBT can really help (no guarantees obviously).

I think it can probably vary from trust to trust though-and, sadly, also the feelings of the assessing practitioners. I love working with people with EUPD and find being allowed to share and support people in their trauma/stories a huge privilege, and my caseload reflects this-but I know not all practitioners feel that way.

I have Bipolar and CPTSD. There is some awkwardness occasionally when people find out about my diagnosis. But to be honest I can't say I have ever experienced any prejudice, stigma, or mistreatment because of either. Most problems are generally minor and largely due to lack of knowledge.

I've had CBT before, i self referred when I moved house and I totally lost the plot. I thought I was depressed but I think it was an episode of rather unstableness relating to my now diagnosed EUPD. It did help to an extent but it never felt tailored quite right. I also had another course of CBT when I had very severe post natal anxiety. This was much more helpful as it was focused at a specific problem. I wonder if I wouldn't get any further help from them now then with the EUPD label under my belt!

It's my anti-depressant that she suggested increasing - citalopram 20mg to 30mg and then maybe onto 40mg. She said no other medications are suitable for EUPD.
I was actually put on the antidepressants to help with PMDD and not depression. PMDD is helped massively by taking the pill almost continuously.

I'll have a look at surrounding NHS areas and see what they offer and if I'm able to access. I'll wait till my GP gets the psychiatrist letter and I'll try to get an appointment with them

How many of your EUPD symptoms are PMDD and reactions to other biological hormones etc such as cortisol and stress/adrenaline.

I look back and see that I didn't get the help I needed. Never even knew half the time I am highly anxious because that was my normal and so on.

Depression - often just emotionally exhausted from trying to stay regulated.

No other medications are licensed for EUPD but a fair few can help with symptom relief. Quetiapine is a mood stabiliser that, at fairly low doses, can help with that horrible unstable feeling. Other people find olanzapine ( an antipsychotic) helpful for helping things feel a bit more “real”, especially if dissociating is a problem.
I’m actually really angry at your psychiatrist. There’s so much support that could potentially be offered. Do ask to be referred to a different psych/out of trust if you can.

@RandomMess As I am on the combined contraceptive pill and take the packets back to back I have been able to sort out the PMDD symptoms from the day to day ones. Definitely some are due to stress, cortisol, adrenaline just I'd say my reaction to them can be quick and somewhat extreme.

Definitely my latest bout of "depression" hasn't been like it was when I suffered in my team's. Much more like you said - emotionally exhausted.

I'm sorry that you didn't get the help you needed. It's so hard.

@JennieTheZebra thank you for this information, it is really helpful. I'll definitely bring it up with the GP. Are any of these able to be prescribed by the GP or do they need the management of a psychiatrist?

I do dissociate occasionally, but perhaps not enough to need to take medication for it. Being able to feel more "stable" would be fantastic though.

If you want, DM me and I can recommend a really good DBT provider. You can do it online.
That's great your mum can pay for you to get private help... it is hard to get any decent or quick mental health support on NHS.
The other good news is that DBT is extremely effective and will really help. I no longer meet the diagnostic criteria for EUPD/BPD after having really good support.

@XioXio Quetiapine should really be started by a psychiatrist, but it can then be managed/prescribed by a GP. Many people find it a very useful medication, especially as it can help with sleep as well. I would talk to your GP.

The whole diagnosis thing is a minefield! I’ve had MH issues my whole life and at various times been diagnosed with BPD ( as a teenager in the 90s), depression with psychotic features ??, and then more recently bipolar and CPTSD. And I am conscious that both my children have been diagnosed with ADHD and I meet all the criteria…. However, I am too knackered to pursue this atm!

Therapy wise, I get nothing from the NHS and I dip in and out of private therapy as needed. Exercise /weight lifting really helps.

When I go into crisis, I do have episodes of psychosis and huge emotional disregulation; often suicidal. At this times, I take antipsychotics, diazepam and Zoplicone on top of my regular meds. I take venaflaxin and lamotrogine (mood stabiliser) and it works at the moment.

Your are left to deal with it yourself IME. My mental health care consists of a bi annual call from a MH pharmacist. I’m lucky enough to have a supportive GP.

it’s a lifelong battle.