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!

I’m 51 so not young. But no history of trauma. Fantastic childhood, happy marriage, strong friendships and relationships. Diagnosed a few months ago.
No mood swings or extreme emotions.
Actively suicidal when I’m hearing voices telling me to do bad things but psychosis removed from my profile this year. Since coming off the medication, things have got really bad.

I would say at a stretch I meet 3 of these now, but they are things that live in my head and don't affect my behaviour. When I was 19 and diagnosed I did meet at least 2 more (self harm, and abusing alcohol/drugs, but both of those were an attempt to escape my moods). Most of my "episodes" stemmed from being socially rejected in some way (probably due to ND traits/undiagnosed ND) .

To add, even at 19 I was still holding down a part time job whilst studying for a degree I got a 2:1 in. I also had a steady boyfriend. I never presented to A&E, got arrested or anything dramatic. Mostly just being sad alone in my room.

This is sad to read. But I believe you 100%. I honestly believe you are instantly viewed completely differently with a MH diagnosis on your records (whether or not your presentation has anything whatsoever to do with it ) it could be long buried in your distant past , but there it keeps on popping up like a bobbing corpse. And if you dare to advocate for yourself and complain about it , it just weighs in as "evidence" that your a paranoid mental case!

I haven't got BPD on my records, but I have got a wrong coding of a mental health condition I didn't have. I was horrified when I discovered it. They did amend it but couldn't remove it. I did previously suffer with anxiety and depression though regardless, and that also gets a change of treatment and bedside manner 🙄.

I purposefully avoid drs/A&E/hospital/mental health care precisely because of this. So I ignore most symptoms (which led yo sepsis 3 yrs ago...) and will only go to the drs etc if I literally perceive it to be an emergency. Most things I'll try to remedy myself.

When you think about it, it's awful that I'm avoiding healthcare due to stigma. We can all pretend it isn't there. But it absolutely is.

Without saying too much, I don't just speak as a patient.

Thank you @CrispsPlease for your understanding and validation. Sorry for your experiences too.

Yep to be honest asking for help with mental health in the past is one of my top regrets, possibly the no 1 regret, because it seems it will negatively affect my healthcare for the rest of my life. I now just wouldn't know what to say to someone struggling - there is still some instinct in me to tell them to seek help even just to send the message that they're worthy of help. Maybe I would just warn them of the potential pitfalls so they're not going into it as naively as I did and they know that any mistreatment is not personal to them.

ETA: "popping up like a bobbing corpse" is the perfect way of putting it!😅

😄I'm glad you liked my metaphor!

You've bought up a really important point about regretting seeking help for mental health issues in the first instance. I can relate to your feelings wholly. This is exactly how I feel. It's one of my biggest regrets from my younger years, seeking help via GP (let's face it - what help !?) I had to go on anti depressants in the end though as if not I would have turned to unhealthy coping mechanisms to manage , such as alcohol (unfortunately I admitted that one too in a vulnerable state.... Another stain you certainly shouldn't volunteer up 😔) . To me it's the equivalent of going to a police station and handing yourself in for stealing some sweets from the pick and mix in Woolies in 1992. You're now forever a "criminal" and "thief" and now can never forget for all eternity.

This becomes problematic when people, for example on here, admit they're struggling with their mental health , or worse , drinking a little too much. And there is pages of advice (generic advice that we're robotically programmed to give ) "go have a chat with your GP. They won't judge and will help you" any reluctance is met with exasperation and accusations of being in denial or being paranoid.

I think people at the time of struggling with their mental health are extremely vulnerable and going to the GP can end up something you deeply regret when better. Services are stretched and to the point of non existence really. There is very limited help a GP can realistically offer. Any holistic therapies take months and months to be seen. Anti depressants are about the only realistic help they can give. And the minute "sertraline" etc is seen on your current medication: here goes the sub standard treatment 🙄. It's a lose/lose.

I do think seeking "official" help is something to think very carefully about- because it does affect how you are viewed, treated and investigated. A past you can never forget.

I employ self help and would seel private therapy if I ever needed mental health care again. I don't offer up my woes to friends or family either, as I think despite what's advertised, people don't know how to help and end up seeing your problems as something they don't want infecting their own lives.

The people that end their lives through poor mental health I think know all of the above and hence are stuck between a rock and a hard place. Admit these feelings and get taken away by the men in white coats and be reminded they're a nut case in 15yrs time when they get seen for toothache. Have all the patronising (futile) "mental health care" for months after, "services" suddenly deciding they must be a risk to their children. Employers questioning their ability to work effectively. Family tiptoeing around and nervously treating them like they're going to lob themselves out of the 2nd floor window 10 Christmas's after.

Option b, keeping pretending they're fine and plastering on the "coping face" (with the advantage of being treated normally )

Or c) fail to manage doing the above any longer, not fancying the first option of "help" and all that comes with it forever after. And do the inevitable.

Sadly I can see how it happens.

I was diagnosed with it at some point in my troubled teens and I was definitely never told. In the recent past it was not uncommon not to be told. I also believe that I was given the diagnosis before 18, which is against the diagnostic criteria apparently. Another psychiatrist said to me at 18 that he didn't think I met the criteria, but the way he phrased it sounded like he was disagreeing with something he assumed I knew about. I wasn't told about it until 2010 and the dates involved suggest I was 16 when it was put on my records.

It's one of the most common misdiagnoses because there was a time when it became essentially a catch-all diagnosis. There is also a strong gender imbalance, women are much more commonly diagnosed with men. As PP have pointed out, a lot of those women were actually autistic or had PTSD or CPTSD.

I have to say I rarely think about it or give it much consideration anymore and I don't feel it's ever affected the way medical professionals have treated me. But I strongly agree that people who have experienced trauma should have that properly treated before labels are idly added to their record. And any new diagnosis should be properly discussed.

Agree with pps, so much for 'every mind matters'.

What about being diagnosed with it when there is no trauma? I find my diagnosis hard to accept as I have no childhood trauma.

@ninjahamster
Hi Ninja, we "met" on another thread. Frankly in your situation the diagnosis sounds wildly inaccurate and inappropriate. Have they ever explained their reasoning?

@CrispsPlease
Quite.
One of the saddest, most rage-inducingly unfair things I ever read on MN was a lovely lady who had been denied fertility treatment because of some (highly inaccurate sounding) mental health thing on her record years before.

It's not even as if "the men in white coats" will whisk you off. You'll more likely be deemed "inappropriate" for any meaningful help or support on offer.

There was also a poster here (I became friends with) who gave up asking for help in the end (she was autistic with a trauma history) because she was just labelled and shunned by services. I went to her funeral.

The diagnosis is just thrown around without proper justification. Like diagnosing someone with a caricature that some god-complex prejudiced psychiatrist has randomly decided fits. ("One of those people".) I remember reading an article that mentioned in passing a woman had been diagnosed with BPD after being raped. It wasn't the point of the article, but struck me as so very, very wrong that someone who has symptoms resulting from a clear and obvious trauma had been told their personality was disordered - how much clearer could it have been that a PTSD diagnosis was more appropriate?!

Unfortunately the diagnosis can only be removed (as a current diagnosis, not historically) by a psychiatrist. But if you're not severely mentally ill, you're not allowed to see a psychiatrist...

Utterly outrageous.

Assume you challenged it or?

You could be having completely different treatment as they assume you have a cancer history, couldn't you?!

A friend was removed to a specialist hospital on the basis she had a history of a specific condition. Except She had never had this... But had identical name and similar dob-utter balls up.

I’m having this issue, I’m being refused hrt because there’s an incorrect entry of cancer. The annoying thing is the correct “lobular carcinoma in situ” (which is not cancer) was on my records until three years ago when admin staff somewhere changed it to “breast cancer” and I’ve been trying to get it corrected ever since and now it’s got my GPs refusing to let me even try hrt and I feel like I’m left to just sink into the hell that is my perimenopause.

This thread has opened my eyes but is so confusing for me.

I have multiple diagnoses and BPD was mentioned a lot when I was younger (at 19) but it was me who suggested it based on reading about it and recognising the symptoms. I didn’t realise I had a diagnosis on record and was later diagnosed with bipolar at 25.

I have always struggled with how I’ve been treated by medical professionals and my friends family and DP have witnessed me being treated like shit. I have been sent home twice from A&E with symptoms brushed off that led to severe illness. I have kept letters from medical services that border on aggressive because people didn’t believe me when I said I’d faced that.

I was referred to a psychiatrist last year as I’d been on medication for bipolar (lamotrigine and quetiapine) with no review, I was going through a really rough time and was suicidal.

The psychiatrist just told me I had BPD and insisted every issue I had was down to that, she was a total bitch and told me it was my choice to commit suicide.

I raged against the diagnosis and realised I’ve never had access to my NHS notes, I knew about the stigma of BPD and felt the bipolar was more accurate.

After calming down I realised that I meet all the criteria for BPD and tick every box. Any anger I feel is internal and I’ve never really lost my temper with anyone or have any violent tendencies. It makes me angry that healthcare workers obviously expect me to be volatile when I’m the most unconfrontational person possible.

The positive side of this is I’ve had so much more support since this diagnosis has reoccurred. I’m doing the MBT and it’s helped so much. I have individual therapy, I get help for addiction issues and after being left to fend for myself (except medication) with the bipolar diagnosis I appreciate the support.

Reading this thread really chimed with me after never being able to access my notes and the hostility I’ve received when I’ve needed healthcare. After my parents died from cancer within a couple of years of each other I did have some health anxiety and was treated like shit.

I have always assumed that being brushed off and ignored was due to previous addiction issues and the assumption i was seeking painkillers (despite mentioning I am in recovery straight away) but I’ve actually been in recovery for 9 years. Now I’m wondering if it’s because of the BPD.

The diagnosis has definitely helped me and the MBT and other support was a godsend. I’ve had multiple apologies from therapists about the language used with the personality disorder part of the diagnosis.

I know there is a lot of criticism about if BPD actually exists, I think it does but it’s used too freely, often wrongly and the stigma doesn’t relate to a lot of people with the diagnosis. Most people I’ve met in group therapy have just suffered a lot of trauma that’s made them terrified of being abandoned.

The best thing would be to look at renaming the diagnosis and to look at historical diagnoses and seeing if they still apply. A lot of women have since been diagnosed with autism and ADHD. I do also have an ADHD (inattentive) but I’m definitely not autistic.

I am going to ask for full access to my medical notes now and if I have poor treatment again then I’ll ask nicely if the bad attitude is due to my BPD diagnosis just to make them aware that I know about the stigma.

I am due to have a hysterectomy and I’m terrified of having poor treatment like my mum did. I have delayed this several times but now I feel I know what’s behind it I will mention my anxieties and previous experiences.

It seems so wrong to me that there is stigma about an illness that is mostly caused by trauma. I have been through so much and faced so much pain in life that it’s no wonder it has affected me. I don’t expect special treatment and just to be treated like a human, I don’t see why a few letters on my notes makes this so challenging.

Yeah i challenged it but it got so complicated the original wrong diagnosis was originally written by a registrar who no longer works there and when I got a 2nd and 3rd opinion they where both in different trusts. Then every dr i spoke to about it since didn't seem to want responsibility of it I would be told to talk to someone else and then they would tell me to speak to someone else. The best I managed was my gp adding a note to my records to say wrongly diagnosed. I gave up in the end and I just now explain to drs individually if they mention it.

She's right to pursue this. I know a woman who was diagnosed BPD on the back of ONE episode of suicidality and "hysteria" who presented to A&E. Women are often given this diagnosis far too quickly and there is a very real stigma surrounding it.

And yes, it is common for the "experts" not to tell women they have put this on their file.

If she can't have it removed, maybe she can have added notes to say that she has never presented as BPD since and that the diagnosis was probably incorrect.

@OhFeckWhatNow no, they’ve not given reasoning and the psychiatrist who has diagnosed me has now left so I now don’t have a psychiatrist at all!
They think I need to go to a residential personality disorder unit.

This thread is very enlightening. I've heard/read over and over again about women being treated terribly by the medical profession. Now I'm wondering if there's a connection between that and having that 'diagnosis' in their records because of a traumatic time in the past and because it's always seen by future drs etc, THAT is why women are treated like shit.

When I was eleven I remember my mum doubled over in pain for months. She saw three male drs and each one said there's nothing wrong with you
It's all in your head
Get a hobby
Stop making a fuss.

Her lovely friend who was well off, paid for a private Dr and she had a tumour on her ovary the size of a grapefruit.

She had been to drs years earlier with depression over a trauma that happened to her...

Is Adjustment Disorder similar to BPD?

What about anxiety listed as a comorbidity, front and centre on a medical letter - would these be red flags?

No, it is more like depression. I used to know someone that had AD as a diagnosis after her mum died.

Ok, thanks @XenoBitch. I should add, the anxiety was mentioned on a document about something totally unrelated.

Was it only a GP who diagnosed her with this? I would have thought they aren't qualified to make this diagnosis or was she referred to a psychiatrist?

I would love to talk to you