Can you get BPD removed off your medical records?

[UnsureColeslaw]

My mum was diagnosed with BPD/EUPD and she wasn’t even told. She had a period of crisis on/off for about a year 17 years ago but has been well since then apart from depression.

She went to the Dr recently (unrelated) and when he turned his screen she saw it was listed. She asked what it was as she’s never been told. The Dr stuttered a bit and said it was probably automated bc she presented with symptoms 17 years ago. She has never been told this and was upset. Now wonders if she has been treated differently as she’s done a bit of googling and really wants it removing, seeing all the stigma.

This is no offence to anyone with this condition but she has never been told, no medication, no treatment. Total shock. Can she request they strike it off and will they do this if she asks? I’ve googled and it says talk to your psychiatrist but she doesn’t have one!

Oh yes, definitely agree it's hastily diagnosed in women. I also know it isn't correct all of the time, and is often diagnosed in place of investigating other possible causes.

I think I've misread the original post and what I thought I'd read was that these symptoms were present for the past 17 years, and not from a single instance 17 years ago. Sorry OP.

My post would make more sense if it was that it was present for 17 years.

I don't really know how you'd get around it from a singular instance, to get it removed.

Is it wrong though? We don’t know. OPs mum was diagnosed by a doctor. OPs mums thinks it was wrong.

you’re not going to get medical history you were diagnosed with removed because you don’t believe it.

@LeoTimmyandViso the women you worked with went back to their psychiatrist… but my mum doesn’t have one. I don’t even know if she had one 17 years ago, but I guess she might have done. It makes it sound like a full on process that might not even be successful.

hearing everyone say how hard it’s been to remove labels and getting incorrect diagnoses changed is quite shocking.

Yes, I can see that now. I'm just going down a google rabbit hole now about why they were called personality disorders and distinct from mood disorders.

The disordered part I can completely understand, but the diagnostic language around personalities is a bit dated. I suppose I've never considered it.

It appears to have come from early thinking that the line between psychosis and neurosis were because a persons personality structure displayed pervasive patterns that were thought to be linked to early development, when really we know now that it's more of an emotional regulation type of disorder or complex trauma disorder that could be linked to childhood trauma, or even later on in life trauma, and genetic differences that affect specific parts of the brain and limbic system.

That's made me a little bit cross to be honest now you've made me think about it a bit.

If the DSM5 can be updated for things like infantile schizophrenia and aspergers to autism, why has it not caught up with other disorders to prevent stigma?

I mean, she could ask to be re-assessed but that would need secondary MH team involvement and people are referred to that to get a diagnosis and treatment, not have a diagnosis removed.

Keep it in your records we will all be able to sue in 10 years when the truth comes out

Thanks @orbital12 for giving me something to stop and think about. It's not often I like to be wrong (who does?) but I really genuinely am happy that I've been given something to think about.

I see what you mean, but then the medical record should say that cancer was suspected but was ruled out. Not that she had cancer.

You are welcome @TheCorrsDidDreamsBetter . Thank you for being so open to reconsidering the implications of the name and to delving deeper into it.

If you keep going down that rabbit hole unfortunately you will find endless stories of people with this diagnosis being mistreated and stigmatised in healthcare - their struggles being framed as "behavioural" - ie that they could control it if they chose to. This leads to a view that there need be no duty of care to these patients - very convenient in an under-resourced system - and maybe why the diagnosis is handed out so readily? I'm not sure. To be honest even if the name was changed I think the stigma would continue.

Yes it’s highly likely to be wrong. Do some research!

Add SIM to that (Serenity Integrated Mentoring).
Criminalised people in crisis (usually women with BPD). I know... I was under it.

I've just read a few and it seems to be the mid-20th century version of hysteria, overwhelmingly diagnosed with ease to women, and less readily and easily diagnosed in men.

My own mum was diagnosed with BPD, but I'll be the first to admit that I just never questioned it, and I don't think she did either even though she has a large social care background focusing on neurodivergences both acquired and developmental. I'm beginning to understand that she's been really privileged in that it's not really affected her personal or professional relationships or opportunities, because it's clearly not a universal experience by a large margin.

I will absolutely look into this. Even the name sounds patronising. I'm so sorry.

@XenoBitch Oh no - so sorry they did that to you. I've read a bit about it and the campaign against it. So unbelievably cruel and brutal and used against people who are often already traumatised. I hope you are ok.

Denial is quite common and it would be foolish to remove it.

Denial is not a symptom. FFS.

Is it true though that if you change your gender and get a GRC you can dump your entire medical records and start again in a new sex?
I was told you can in some training I had about ten years ago.

30 minutes ago, I think I'd have had this same thought, but now I absolutely don't!

If it is as the OP says, and the OPs mum had a single crisis event which will have undoubtedly lead to some trauma, and she's been diagnosed with BPD without a proper assessment or clinical understanding of how post traumatic stress can manifest and left unsupported for 17 whole years then the diagnosis shouldn't have been made in the first place.

It's not fair that anybody who seeks medical care after a traumatic event could get branded with a heavily stigmatised disorder without a proper and full diagnostic procedure being undertaken, but it is often women that this happens to and it's mysogyny in healthcare that can lead to a lifetime of denial of therapeutic treatment for both related and unrelated conditions, as well as treatment from other services like the police.

I think given that medical records are mostly digitised now that the information you received 10 years ago is not really relevant right now, nor is the OPs mum going to change gender or acquire a GRC.

Thanks. It was a mess. When I was referred to it, I read up on it and got so mad! I emailed the man who invented it. I actually met up with him (he was delivering training in my NHS trust). He was an ex cop, and he was all cop speak... He started the scheme because he was 136d "legitimately". He actually told me that people with BPD are not in distress or unwell and take up resources... and that is why he started it really.
Horrible man. My therapist met up with me when I saw him, and was very stunned too. He even drew me a diagram of me on a bridge and said I could be arrested as I could kill people below me... he drew a stick family with kids. Arrested for just being there. This was despite me saying that the place I kept going to was a very high up landmark bridge with no one underneath it. Just water and mud.

Very difficult to get records amended. Apparently I've still got my tonsils though I'm pretty sure I had them out when I was 26. I've offered to show my lack of tonsils to various doctors but no one has amended my records. Also was asked about my diabetes once. Never had it etc etc. Presumably whoever transposed the records from paper to internet let their mind wander!

No, I know, I apologise for the derail.
I would like something removed from my records, been told its impossible even though this thing is completely irrelevant to my health going forward. Knowing it is on my records keeps we away from doctors though and because of this I often jump on threads like this in the hope of solutions.

You should definitely challenge it as a possible error. This sort of practice needs to change and we can only achieve that by complaining and challenging a poorly designed system. It's not just for your mum's sake as this likely error will affect future medical care, but also on behalf of many of us who have at one point or another been mistreated by psychiatry as women. They should not get away with this lazy and unsubstantiated labelling. It is labelling because a true diagnosis comes with information and treatment. If she really had BPD then she should absolutely have been told about it and offered treatment. Otherwise it was likely just some professional's speculative comment at the time. Absolutely wrong and disgusting.

"Not in distress" 🙄🙄🙄 If only that were the case. It's horrifying.

Medical records are so strange!

You can't get them amended, and at the same time there's sometimes also just a lack of them completely.

I was admitted to hospital with a very serious heart infection around 10 years ago, and during my stay in hospital I developed cholecystitis.

I was told by the consultant in charge of my care that if somebody asks if I've ever had any heart problems, I should tell them I've had an infection across 2 layers of my heart because it can be hard to detect and they might need to know what to look out for if it happens again, yet there's absolutely no medical record for it anywhere. The only proof of it that I've got is photos my boyfriend at the time took of me absolutely covered in blood because they couldn't fit my cannula properly and my skin was a funny colour, they're time and date stamped, so I know it happened.

So not only is it hard to change medical records, it's apparently hard to get them added too.