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AMA

I have Emotionally Unstable Personality Disorder AMA

104 replies

UndertheCedartree · 04/02/2024 20:55

AMA

OP posts:
AmandaHoldensLips · 05/02/2024 09:56

Can I ask what led you to seeking out your initial diagnosis when you were a late teenager?

crostini · 05/02/2024 10:00

PrawnDumplings · 05/02/2024 07:46

You sound like someone who I used to line manage.
Please get help. Whatever is available op.

She is?? She has a psychologist and is on medication.

UnimaginableWindBird · 05/02/2024 10:01

You've already answered the question I was going to ask, OP, about what support you find helpful, so thank you for that.

I have two friends with EUPD, and often just wish they could see themselves the way their friends see them.

weebarra · 05/02/2024 10:02

My DSis had EUPD. Every professional kept insisting that she must have had trauma in her early years and she (and we) found it very distressing because she didn't feel that she had experienced early trauma.
Thank you for posting, it's a very misunderstood condition and it's interesting that you think of it as a type of neurodiversity, I think I do too.

UndertheCedartree · 05/02/2024 10:34

HappyHedgehog247 · 04/02/2024 22:10

Which parts of DBT did you find most useful?
What's the most useful thing a therapist can do to support a client with EUPD?

I found the skills in emotional regulation and distress tolerance useful. I also found mindfulness good although hard at times. The diary cards were useful to see if certain skills helped. My diary cards showed although I was doing much better - reduced to no self harm or suicidal ideation my levels of distress were still quite high so I needed trauma therapy. The 1:1 with the psychologist was really helpful too to explain how my mind worked and ways to change my thoughts and behaviour. For example my psychologist explained how when I was always saying people 'should' act in a certain way I was setting myself up for upset - I had to accept how they did behave as it was out of my control to change it. It took quite a while to get my head around that as I kept saying 'but they should!'

Some of the best things a therapist could do is - supporting their client to learn how to calm down - using an ice pack, a cuddly toy, breathing. Also radical acceptance - when we don't do this is causes us pain - we need to accept things that have happened so we can move on - this doesn't mean these things were ok, just that they kind hurt us anymore. And try to help them have more flexibility and less black or white thinking. I struggle with this a lot! And finally I think working on self esteem is really important as most of us have very low self esteem.

OP posts:
UndertheCedartree · 05/02/2024 10:36

One thing I will say is DBT needs to be done by someone properly trained in it. Ime, psychologists are best placed to do this therapy. If it's not done properly it can have very negative effects and trigger trauma.

OP posts:
UndertheCedartree · 05/02/2024 10:43

ThirtyThrillionThreeTrees · 04/02/2024 22:48

What would you like people to know so they could support or be more aware of EUPD and the challenges that come with it?

I would like the stigma to go. One of the stereo types is that people with EUPD are manipulative or attention seeking. That is not part of the criteria for diagnosis. I'm sure some with EUPD are manipulative as some without are but please don't tar us with the same brush. As for attention seeking - we are social animals it is normal to seek attention from others - maybe we seek it more but that's because we seek support to manage our emotions and it those needs aren't met then it can become maladaptive. We are not 'drama queens.' We experience emotions extremely strongly - please don't invalidate our feelings. Please don't write us off, if you get to know people with EUPD you might find you like us.

OP posts:
UndertheCedartree · 05/02/2024 10:45

PrawnDumplings · 05/02/2024 07:46

You sound like someone who I used to line manage.
Please get help. Whatever is available op.

Would you mind explaining? And what help do you think I should get?

OP posts:
DreadPirateRobots · 05/02/2024 10:46

Did you know there is a great musical comedy TV show centred around a character (Rebecca) who struggles with her emotions and is diagnosed with BPD (as was then) during the run? It's called Crazy Ex-Girlfriend and I think you can currently watch it on ITVX. Don't be put off by the title - it's very much a wry self-description on Rebecca's part. It's also very funny and has great parody songs.

UndertheCedartree · 05/02/2024 10:47

todayshappening · 05/02/2024 08:32

I was diagnosed with this last year. My medication has been changed 10 times because none of them have worked or I've had horrendous side affects. In theory I've suffered for a lot of years but it was after my breakdown at the end of 2021 that got the ball rolling. Ptsd, depression, anxiety and eupd I'm 39 and feel like like a failure.

Don't give up on the medication it took a couple of years to get mine sorted. Have you been offered DBT?

I do know how you feel though. I'm the same age and I feel like a failure too. For you 🌹

OP posts:
UndertheCedartree · 05/02/2024 10:47

OldTinHat · 05/02/2024 08:50

No questions, but I've been diagnosed with it too.

Hope you're ok and been given some help.

OP posts:
UndertheCedartree · 05/02/2024 10:49

Xmastime2023 · 05/02/2024 09:47

I relate to a lot of what you are saying finding it hard when your children are up set, I feel like I’m going to be sick and getting so frustrated with things, do you think it’s possible to mask EUPD?

Yes, it can be so tough. Yes, I definitely think it is possible to mask it.

OP posts:
UndertheCedartree · 05/02/2024 10:58

Turkeyhen · 05/02/2024 09:50

How is your relationship with your parents and siblings now?

Thank you for this thread. I have a family member with EUPD and this has had a devastating impact on the whole family. However for years they refused to engage with MH services, then, when they did engage, they were diagnosed with bipolar (which may be incorrect or a partial diagnosis, as I understand it they can coexist?).

I would be very interested to hear about your experience of DBT too Flowers

My relationship with my parents and siblings has been helped by DBT. I still struggle with some things but I've been able to accept a lot too.

I'm sorry to hear about your family member and the effect it has had. Through my inpatient experience I saw some people who couldn't engage and they have spent their life in and out of hospital. Those who are able to fully engage have done really well. I'm not sure why certain people didn't seem to be able to engage. Maybe very depressed. My DC were my motivation to do anything I could to get better.

I think it can coexist but also someone can be diagnosed with the wrong condition. With EUPD you experience many emotions - highs and lows over a day. With bipolar you spend extended periods either depressed or manic.

I'll do a separate post about DBT in a bit 😊

OP posts:
todayshappening · 05/02/2024 11:13

@UndertheCedartree not DBT but have done CBT and EMDR neither of them helped tbh and they haven't offered anything else other than a group thing (can't remember the name) but I chose not to do it. The medication I'm on atm is quetiapine, mirtazapine and propanalol (think that's how you spell it) but they are looking into changing again 😞 I have 5 kids and I feel that they feel that they are walking on egg shells around me because my mood changes so frequently that they don't know what mum they are getting from one minute to the next.

Great thread btw Flowers I feel like a lot of people don't understand eupd and this gives a good insight into it. I should probably show my husband so he can understand me more

OldTinHat · 05/02/2024 11:55

UndertheCedartree · 05/02/2024 10:47

Hope you're ok and been given some help.

Thank you. I'm well supported because I was diagnosed with psychosis 2yrs ago and through the support from EIP they also got me an ADHD and CPTSD diagnosis as well as the EUPD. Plus GAD and depression. I felt like the world suddenly made sense after being diagnosed!

I also found DBT to be very useful. More so than the meds, actually. I'm on lurasidone and dexamfetamine. My therapy has ended (was allocated 40hrs) but I feel much better for it.

Keep on keeping on OP! You're doing great and the people who love you will love you no matter.

Goodwitch9 · 05/02/2024 12:33

LeafHunter · 04/02/2024 20:58

It hasn’t been referred to as eupd for many years now - is that diagnosis name important to you?

Such a helpful start Leaf 🙄

Turkeyhen · 05/02/2024 14:33

UndertheCedartree · 05/02/2024 10:58

My relationship with my parents and siblings has been helped by DBT. I still struggle with some things but I've been able to accept a lot too.

I'm sorry to hear about your family member and the effect it has had. Through my inpatient experience I saw some people who couldn't engage and they have spent their life in and out of hospital. Those who are able to fully engage have done really well. I'm not sure why certain people didn't seem to be able to engage. Maybe very depressed. My DC were my motivation to do anything I could to get better.

I think it can coexist but also someone can be diagnosed with the wrong condition. With EUPD you experience many emotions - highs and lows over a day. With bipolar you spend extended periods either depressed or manic.

I'll do a separate post about DBT in a bit 😊

Thanks for your reply. I do think my family member exhibits both longer cycles of disordered mood (bipolar) and PD symptoms (as well as CPTSD) so it's complicated.

MH services are such a postcode lottery: they have had few and far between psychiatrist appointments (no continuity in terms of which psychiatrist they have seen), various medications prescribed, all of which had horrible side effects so weren't continued (but self medicating, complicating the situation even more with substance abuse issues), EMDR for the CPTSD (helpful, but only for the PTSD). No in patient treatment at all, ever. Because of the lack of professional support, family stepped up, and tbh family were the wrong people to be in that role, because a) triggering, and b) lack of expertise/understanding leading to inadvertent enabling. We have lurched from crisis to crisis for years and years with devastating effects on everyone. Our family is now broken.

It sounds like you've had much better levels of support and intervention by MH professionals, which I'm so glad to hear. I just wish that level of service could be available everywhere.

Justifiedcheese · 05/02/2024 17:35

UndertheCedartree · 04/02/2024 21:47

I had DBT as an inpatient which was really helpful. OT also very helpful.

What has not been helpful is short IAPT style therapy which always brings everything up then leaves me to deal with it once therapy has finished.

I was also referred to a DBT skills group in the community which was awful. The people running it knew little about the DBT skills, they allowed the group to be derailed by people talking about their issues and then let a man join who would talk about all the aggressive things he'd been doing. I left at that point. Baring in mind most with EUPD have suffered trauma it was awful they allowed it.

I could do with OT input now but it seems to have all stopped in COVID and never started again.

Thank you, that's interesting. I hope clinicians take note of therapees' views of therapy, and that you again get the input which benefits you.

sunshinesupermum · 05/02/2024 17:58

How's EUPD different from BPD? My partner was diagnosed with BPD 15 years ago and after many different meds the only one that worked was lithium which he took for less than a year before it began damaging his liver and kidneys. But he no longer suffers the extreme highs and lows nor panics in the way he used to.

I do hope you live your life to the full as much as you are able OP.

gotstones · 05/02/2024 22:40

Thanks for your replies OP. This has been such an interesting and important thread

Tr1skel1on · 05/02/2024 23:03

Thank you for being so honest and open OP. Interesting you say it's neurodivergant. My teenager is autistic and ADHD and ticks every box for eupd but CAMHS will not diagnose it. My child has been on antipsychotics since aged just 10. Medication can be amazing, it has certainly made our lives so much easier

SylvanianFrenemies · 05/02/2024 23:07

How to you feel about the idea of personalities being "disordered"? It feels quite judgemental to me. Would you prefer a different descriptor, or are you ok with it.

Justifiedcheese · 06/02/2024 16:25

Goodwitch9 · 05/02/2024 12:33

Such a helpful start Leaf 🙄

Also entirely inaccurate. Presume they were expecting BPD and knee jerked without reading.

NotARealWookiie · 06/02/2024 16:28

LeafHunter · 04/02/2024 20:58

It hasn’t been referred to as eupd for many years now - is that diagnosis name important to you?

This is the current diagnostic name. You’re thinking BPD.

UndertheCedartree · 06/02/2024 20:39

For those interested I said I'd do a post about DBT.

I was lucky enough to be offered a full programme of DBT ( Dialectical Behaviour Therapy) which is the gold standard treatment for EUPD. But it does take a lot of commitment as you do it as an inpatient. You complete 2 cycles which take 6 months each. Prior to that you are assessed for 3 months, you do a 4 week introductory course and you do relapse prevention at the end so you're looking at 19 months minimum. I was in for 2 years as my psychologist recommended a course of CBT after I did the DBT and COVID interfered too. I started by going home Friday afternoon to see my DC and going back Sunday afternoon. This increased as time went on.

After breakfast in the morning there would be a meeting. Everyone gets checked in on and can make any requests, the activities for the day would be read out and then we did a mindfulness exercise, like a breathing exercise or a game like girls name going through the alphabet. The funniest was making up a story where one person starts, then the next person continues etc. all the staff would join in and it was hilarious.

Once assessed you started a 4 week course that introduced you to DBT and explained how it worked and what the programme would entail.

Then you'd start the main programme. Once a week you would have your DBT group. The first thing we would do is go over our homework from the previous week and our diary cards. During the week you would mark numbers as to how much you felt a particular emotion like 'happy' or 'anxious', you would also mark which DBT skills you had used. Each person had to explain an emotion they were feeling and which skill they'd used and how it helped. Then we did a mindful activity - it could be colouring, a guided meditation, grounding using the senses - all sorts . Then we'd do learning. You cover 4 different areas - Mindfulness, Distress Tolerance, Emotion Regulation and Interpersonal Effectiveness (6 weeks each for 1 cycle.) We would learn different skills and how to relate them to real life. There would be 2 psychologists running the group one would lead and the other was there so if anyone was struggling they could step in and take them out if necessary for a chat. This meant the group didn't get derailed. We'd get homework every week which would involve practicing a skill and noting down if it helped us with an emotion for example my anxiety was an 8, after using the skill it was a 4.

Once a week you had a 1:1 session with your psychologist. You wouldn't talk about the past but about your current situation and look at skills that could help. You could get more guidance on how to use the skills or what skills to use based on your experiences that week. If you got distressed your psychologist would support you to calm down using skills. I'll always remember the first time I managed to calm down on my own.

Once a week there was a Skills group which covered different skills and was open to anyone so those who had finished their main DBT could continue to practice the skills. There was also a mindfulness session which would involve a selection of mindfulness meditations and mindfulness activities. We also had another session that was run by our consultant psychiatrist which was all about the practice of mindfulness meditation - teaching the theory mainly and ending with a short meditation. Our consultant was really good - he also ran another group about medication where he taught us about all the different medications we were on and we could ask any questions we had.

We could ask to see our psychologist for extra support sessions and there were also 'coaches' on the ward that would step in to help us apply our skills during life on the ward and they could help with homework too.

When we finished 2 cycles of the main programme we'd do relapse prevention for 4 weeks.

After dinner there would be a 'debrief'. We could talk about anything that had happened that day and everyone was checked in and told the group if they had used any skills.

I think that's pretty much it.

OP posts: