Incorrect diagnosis

[PurpleLovecats]

I have been diagnosed with something that is incorrect. I have done multiple online screenings that state I do not have this. My family all agree the symptoms do not adequately represent me. I’ve asked for clarity from the MH team of how they reached this diagnosis but have been ignored.
I was removed from medication that worked (family back me on this). Offered therapy for emotional disregulation when I don’t struggle with that.
i am being discharged from the MH team due to our fractured relationship. I want the diagnosis removed from my medical notes, has anyone managed this?

What is the diagnosis?

Is the diagnosis EUPD/BPD?

Yes

ND is frequently misdiagnosed as EUPD/BPD in women.

Can you request a second opinion?

It's extremely unlikely that you've been given a diagnosis without justification. It's also unlikely to be given a diagnosis without being involved in the process.......your presentation may indicate emotional regulation and poor coping, unfortunately no amount of medication can help with that. It's more talking therapies and working on skills.

I am sorry but this is nonsense.
I am a MH professional and this happens ALL THE TIME. Something traumatic happens to us, we react, and then we are told it’s a disorder that sits within us. It makes me soooooooo angry. You know that there is no actual evidence that any psychiatric “disorder” even exists? They were created by vote, not actual scientific / biological evidence?

OP, it is hard to get rid of this diagnosis, because some MH professionals believe denying it is proof you have it. Look up AD4E / Drop the Disorder / Mad in America. Dr Jessica Taylor too. You will find plenty of people there offering support.

therapy with a non pathologising therapist is likely to be helpful. I wish you well.

In which case I would expect that they could give me examples of where I have demonstrated this and so far, nobody has been able to.
Family say I have no issues with my emotions.
I am autistic.

Medication was hugely effective, again family state this to be the case.

No history of trauma. No risky behaviours other than self harm and suicide attempts due to the voices I hear.
No impulsive issues, no substance misuse, no rapidly changing emotions. No fear of abandonment, no issues with relationships (been married 30 years). Solid friendships. Good relationships with all family members.

Would you mind disclosing what medication helped? My son is autistic and has awful social anxiety. Is it something that helped with that?

THIS! Complete agree with this post 100%. The medical model is ridiculously outdated, has poor validity and poor reliability. It’s archaic. Even the British Psychological Society are trying to get rid of the DSM usage, and all the labels. They released a framework that essential tells healthcare professionals to stop asking “what’s wrong?” and instead ask “what happened?”. A shift in society needs to happen, we need to stop seeing people’s emotions as “illness”. People have emotions for a reason!!

What medication were you on which you did find helpful? Why do you want the diagnosis removed from your medical notes?

I thought it may be Eupd. I was also given this diagnosis incorrectly and have since been diagnosed with asd.

Antipsychotics. They stopped the voices/ hallucinations.

Angels telling you what to do?

I’m not sure that’s relevant, I’m wanting to know if anyone has managed to get an incorrect diagnosis removed x

It really isn't extremely unlikely at all EUPD is given out because there is a crossover in symptoms with autism in girls. An autism assessment should ALWAYS be carried out before settling on EUPD.

Not often I disagree with you @gamerchick but having worked in MH for decades. It's more likely that they are demonstrating those symptoms.....having one diagnosis doesn't necessarily negate the other. You can be on the spectrum AND have a personality disorder. Clearly the clinical impression that the professionals have is that they are showing evidence of EUPD

From experience (similar story to yours) they won't remove a diagnosis off your records. The diagnosis is their opinion, not fact. I first spoke to PALS and they said I would have to go through court. You can get copies of your medical records and dispute what they have said but as it is their opinions it won't be removed. It can be noted on your records that you disagree with the diagnosis.

Ok, sorry about that, I thought it was you as you have posted about this before.
I guess the issue will be that the clinicians involved in your care have diagnosed you so it is irrelevant whether you agree or not. Maybe get a private psychiatric assessment to compare?

In which case they should share that evidence with me? I’ve been asking for months and they haven’t come up with any justification for the diagnosis.
They are also ignoring the psychologist’s diagnosis of ASD despite being on the same team.

Voices/hallucinations are not a part of asd. That will be related to your mental health and whichever thing may be causing it. Eupd can be a reason for this when under extreme stress but there are also very many other reasons that you may have these symptoms ranging from chronic stress to schizophrenia (which I’m not for one second suggesting fits you, I’m just giving examples of how many things could cause this), but like I said, it can also be due to Eupd, it’s about the symptoms overall, not just one of them. You must have been displaying symptoms of Eupd to receive the diagnosis, I know that at the time, I was from the outside without somebody taking the time to get to know me and to understand what was really happening for me, but for me it was (and is) asd, cptsd, major depression and an anxiety disorder. I care way more about what I think of me and how my mind and life actually feel to me day to day than what others think, (although you wouldn’t think it with the anxiety 😅). It’s a shame to have an incorrect diagnosis and very frustrating as you will be viewed that way unless you can show otherwise, but if you need help, and you’ve presenting as a stable, grounded and insightful person, they can’t say that you’re not and will work with you accordingly. And if they do still misunderstand you, it sucks, but it still doesn’t make it who you are, we know ourselves best. I don’t think that having a fractured relationship with a mental health team will go in your favour either unfortunately. Sorry, I’m not saying that to be unkind, I just feel like things have to be pretty extreme for them to stop working with you due to a fractured relationship. My personal opinion (which is only my opinion), would be to stop focussing on the diagnosis and try and focus on what may make you feel better. Asd isn’t anything to be fixed. Realising late in life that you have this is actually a bit of a grieving process in some ways but such reassurance and relief in many others as it makes so many things make sense but the voices and hallucinations and any other symptoms that are affecting your life in a negative way are the things I would be focussing on as they are the things you can try and work on and get some concrete help with.

I think that's part of the problem is that on the outside it can look like symptoms of eupd when in fact it is autism. However, it is a very common experience of autistic women to be diagnosed with eupd after one meeting of only a few minutes at a time of extreme stress (often autistic meltdown). It's well documented that the person often doesn't know that they have been diagnosed with eupd until they see it on their records. It has a detrimental effect on people. I get what you say about not focusing on the diagnosis and their opinion doesn't matter. In my experience having that on my records has impacted how I am treated by health professionals in general.
Can I ask your experience of getting the eupd diagnosis? Was this before your asd assessment and other diagnoses?

They are part of ASD. They often hear they’re thoughts aloud.

www.oxfordhealth.nhs.uk/wp-content/uploads/sites/13/2020/01/ASD-Advice_Hallucinations.docx

Well you win biggest load of bullshit I've read on mumsnet today

I understand that but I did have something that worked and they took it away? I’m being discharged as we cannot find a way forward.
It is actually the case that those with autism are more likely to experience hallucinations

https://neurodivergentinsights.com/hallucinations-and-autism/?srsltid=AfmBOoripEQS04lCan5vLEBiyglbJFiViYrw4oU32Y8ZeWiyFQkmfNE-

I do suffer with anxiety and have done all my life, the hallucinations came in my 50th year.

I have had several hospital admissions in the last few years and none suggested EUPD. That was both on private and nhs wards.

As I said, I don’t suffer with extreme emotions, in fact I rarely cry, don’t get angry, don’t feel real happiness. I’m very flat. So when they’ve tried to do therapy with me and asked for times I’ve felt intense emotions, I can’t name any. That’s just not me.

They’ve put in my notes that I have a fractured relationship with my mother. I have NO IDEA where this has come from, we are very close, see each other a few times a week. My parents are here for Xmas day, we simply have a very happy relationship. Me and my siblings had a wonderful childhood full of love and experiences.

So we are stuck basically.