Editor’s Note: This post was originally published on Mad in the UK in May 2019, we are reposting some of our favourite blogs over the next couple of weeks.
Psychiatric diagnoses have far-reaching consequences for every area of your life: welfare, employment, health and travel insurance, physical and mental health assessment/treatment, adoption rights, and social stigma, to name but a few. Yet they are just subjective opinions with no scientific basis and can change over time. In my experience, ‘Borderline Personality Disorder’ (BPD) is a particularly stigmatising diagnosis which condemns us to exclusion and neglect, or to punitive judgmental treatment. I recently challenged my diagnosis of BPD and was successful in getting it removed, and replaced with my former diagnosis of ‘Schizoaffective Disorder’, with a history of complex trauma. Of course, I believe that all these labels are a pile of nonsense, but for now, we do need them to access welfare, treatment and support. So, the best we can do with the current system is to match our mental health challenges to the nearest corresponding diagnosis to get a best fit. But I’m not sure if psychiatrists are the right people to do that because they often don’t listen or get to know us properly.
I was successful in getting my diagnosis reverted because my psychiatrist could see that I was well-informed and quite prepared to make life difficult for them. You see, when I insisted that he do a paper trail he had to admit, under duress, that the label of BPD was given to me by a previous psychiatrist who only saw me once, and for literally five minutes, then cheerfully discharged me without any discussion of the fact he’d just changed my diagnosis to BPD. According to my latest psychiatrist, this label then ‘stuck’ because no one thereafter had had the time, or was bothered, to read my notes to see that there was a long, entrenched history of what they call ‘psychosis’. So, each time a new psychiatrist came along, BPD was rubber-stamped and perpetuated because it was the last thing in my file – decided on a whim by someone who’d spent just five minutes with me and not even consulted his colleagues or my notes!
I only found this out because I happened to be going on holiday and required confirmation of my official diagnosis for travel insurance. Yet the consequences of being labelled thus would have been, and have been, hugely detrimental. For example, in the past, I was raped by a male nurse who told me after the attack that no one would believe me if I reported him because ‘everyone knew I had a personality disorder’. And you know, he was right about that: I wasn’t believed. I later found out that he’d been struck off for committing the same crime repeatedly with other patients… if only they had listened to me. Not to mention the suicide attempts I resorted to because of being punished and humiliated when I asked for help – and all because of that label. So, I stopped asking for help because there was nowhere safe to turn and I had lost all hope.
Now that I’ve managed to get BPD removed, I would encourage anyone who doesn’t agree with their diagnosis to do the same, but to enlist the assistance of an independent advocate or someone in the system whom you trust and can help you put a case together, and provide emotional support through what can be a very challenging process.
You need first of all to find out the facts of who gave you the diagnosis and when: what their rationale was – in other words which criteria in the DSM they thought you met, and what their evidence for this was; who was consulted and informed; and did they fill in a SKID II form to document and justify their decision. A caring nurse (who knew me well) helped me devise a list of questions you might also find useful to put to your psychiatrist to ascertain the facts (see Appendix 1) – and I would put these in writing.
If you disagree with their process or reasoning, you need to put a case together to show how your ‘symptoms’ and experience don’t match the criteria for that diagnosis – so you will need to familiarise yourself with the criteria in the statistical manuals (DSM or ICD) – and which diagnosis you believe you do meet the criteria for if any. Pay attention to the number of criteria required to justify a diagnosis and how they are subdivided. So, in the case of BPD, one of the criteria is impulsivity, which could be in the areas of spending, gambling, binge-eating, sexuality, or whatever. But each of these examples doesn’t add up to separate criteria, they only justify one – impulsivity – however many forms of this you happen to display.
You should also note if there are any qualifying statements such as, in the case of BPD, the criteria ‘must be severe and prevalent across all areas of your life’. This immediately ruled out that diagnosis for me because my difficulties with relationships and intense anger – two of the criteria – were only prevalent in my contact with psychiatric services (quelle surprise) because I had been treated so badly by them, and were not problematic in any other area of my life. So, context is important to bear in mind. But whilst psychiatrists often lazily cite childhood trauma as a justification for a diagnosis of BPD, this does not actually appear in the DSM or ICD as a criterion – so you can catch them out with that, for example.
The circumstances in which psychiatrists give us these labels are most often shrouded in secrecy and subterfuge. They don’t follow due protocol of consulting or informing us, or conferring with their colleagues or our notes, and they don’t fill in the required paperwork or even check that our so-called symptoms match their diagnostic criteria. Instead, as my psychiatrist somewhat sheepishly admitted when I pressed him on the matter, ‘Psychiatrists just go with their hunch about a patient’. We can interpret that as ‘blatant prejudice and bigotry’. They are quite literally, a law unto themselves. So, let’s start holding psychiatry to account and take some power back over how we choose to self-define.
Postscript: I wrote to the psychiatrist (see Appendix 2) who was responsible for giving me the BPD diagnosis to let him know how it had affected me, but still haven’t had the courtesy of a reply.
Appendix 1: Preparation for Meeting with Psychiatrist re challenging BPD Diagnosis
Dear Dr X,
I have prepared the following list of questions to which I would be grateful if you can provide the answers. I appreciate you might need time to look through my notes or consult with your colleagues to answer these fully.
- Who changed my diagnosis from Schizoaffective Disorder to BPD?
- Who was consulted about this?
- Who was informed?
- Why was my diagnosis of Schizoaffective Disorder dropped and replaced with BPD?
- Why was I not consulted or informed?
- On what grounds was my diagnosis changed?
- Was a SKIDII completed?
- Which diagnostic framework was I measured against DSM or ICD?
- Which of the diagnostic criteria for BPD do you believe that I meet?
- What is your evidence for this?
- Which of the diagnostic criteria for Schizoaffective Disorder do you believe that I no longer meet?
- What is your evidence for this?
- Where did discussions about changing my diagnosis take place?
- When did this happen?
Thank you very much for your time and consideration.
Appendix 2: Subsequent letter to the psychiatrist who changed my diagnosis to BPD
Dear Professor X
You may not remember me because you only met me once in 2011 during a consultation lasting five to ten minutes when I was admitted overnight; but you will have seen me over the years in passing as I was a patient of Professor Y’s and had a number of stays in ward 9 between 2003 – 2006, and before that, several lengthy admissions – some lasting years – in other wards when I was younger.
On the basis of the 5 – 10 minutes (let’s call it ten for the sake of magnanimity) you spent with me, you decided to drop Schizoaffective Disorder as my official diagnosis and replace it with Borderline Personality Disorder. Aside from the gross arrogance of making such a decision on the basis of so brief a consultation, you did not fulfil the required protocol of letting me know you had changed my diagnosis or consulting with myself, or anyone else who knew me well, in reaching a decision with potentially devastating implications for my future care and wellbeing.
Having worked in the psychiatric system for a long time, you will be only too aware of how patients given a diagnosis of BPD are routinely stigmatised, mistreated and discredited. Even if you think yourself to be a humane well-meaning practitioner who treats all your patients with suave ‘kindness’ (which I do not doubt), nonetheless you are not so naïve not to know that branding someone with this label is tantamount to prejudicing their treatment for the worse at the hands of future colleagues.
I won’t labour the point but had you taken the time and care to read my notes and get to know me properly before making such a consequential decision, you would have discovered the damage that label had done to me when I was given it before, and how much I, therefore, feared it. In short, it put my life at risk because the punitive judgemental treatment I received when I was labelled thus in the past made me fear the hospital and so I jumped off Salisbury Crags and made several other serious attempts on my life because I had lost all hope and trust in professionals, so did not reach out for help.
Another notable consequence of being labelled with BPD is that I was raped by a nurse who blackmailed me by saying that he would say I was lying if I reported him and that no one would believe me because of my diagnosis. Lo and behold, my psychiatrist (who had been responsible for the diagnosis) did not believe me and she punished me for ‘setting out to ruin his career’. Several months later I found out from a colleague of his that he had been struck off for sexually assaulting a number of female patients who also had the diagnosis, presumably because he thought he could get away with it, such is the stigma and hatred in the system towards those of us with that label. Inevitably, my psychiatrist did not seem to think I had a right to be told of his conviction or given an apology for the way she had treated my disclosure.
Now, of course, you are not to blame for a nurse raping me or the fact that my distress was so acute I tried to kill myself; but I do hold you complicit in a system which facilitates and perpetuates such abuse and despair by giving people a label which you know will discredit them, especially, as you did so with me, in such a cavalier and irresponsible fashion.
Thankfully, my diagnosis has now been changed back to Schizoaffective Disorder but this would not have happened had I not found out by accident, when applying for travel insurance, that you had changed my diagnosis to BPD which then stuck because subsequent psychiatrists spent so little time with me, did not gain my trust and, as was admitted to me, didn’t read my notes to gain a fuller picture. They simply followed your suit because it was convenient and conventional to concur with a professor.
I have a long history of severe distress, including paranoia, voices, visual and olfactory hallucinations and extreme mood swings (including prolonged periods at either extreme); there is also an extremely high prevalence of ‘schizophrenia’ and ‘bipolar disorder’, hospitalisation and suicide in my immediate and extended family. Yet none of this was reflected in your assessment of me. It would be interesting to know which of the diagnostic criteria for BPD you thought I fulfilled. Perhaps the fact that I had strong feelings of attachment towards professionals (which precipitated the crisis leading to my admission to your ward) and related to this, a childhood history of trauma and neglect? You should not need reminding that neither of these are in themselves actual criteria of either DSM or ICD, and that even if they were, would not in themselves be sufficient to justify a diagnosis of BPD.
Your assessment of me was, at best, ignorant and lazy; at worst, downright negligent and mean. Let’s be honest, Professor X: you simply did not find me a very credible patient and that was down to your personal prejudices/preferences. Whilst you hid your distaste of me in a veneer of pleasantry, you understood very well the dire implications for me of your decision to change my diagnosis to BPD, and that, I believe, is why you chose not to inform me, which meant I had no recourse to challenge it.
Psychiatrists like yourself have far too much unchecked power, and very little scientific basis for your actions. I believe that all mental distress (whatever label it is given) has its roots in trauma, disorganised or insecure attachment and/or overwhelming pressure. But very few psychiatrists bother to scratch beneath the surface of the ‘symptoms’ they see, and rather resort to a caste system of privileging people whom they like and feel sympathy for by giving them an axis 1 diagnosis (which results in benevolent favourable treatment and welfare) and for the rest, condemning us to judgement and misunderstanding by blaming our distress on character defect. All psychiatric diagnoses are fundamentally flawed and lack substance, as is now widely acknowledged even by many in your profession, but BPD is a particularly harmful and perfidious form of abuse.
I believe that we should all try to learn from our mistakes (particularly where they have power to hurt others) and that we should be held accountable for our actions. That is why I have chosen to write to you. I hope you will have the professionalism and good grace to question your practice in the light of what I have said, and that it might have a helpful impact on how you treat other people who, through no fault of their own, rely on you for help.
C.C. Dr C (GP)
Thank you so much at writing and posting a brilliantly written post. I am so very sorry to read that you were violated by a man who abused his position of power and that you were disbelieved and unsupported because of a label. I do hope you can heal from that in itself and the other traumas you have experienced. I also hope that you have good support and are able to manage your symptoms as best you can.
It is damaging to be labelled. I know challenging a system where they have unchecked power is possible. As you say it is about knowing how it works and the gaps in it. I am definitely with you on reform.
For me, a new psychiatrist commented on the way I walked then asked when was the last time I was in hospital. I told them, noted the confused look on their face. Then explained I had been urgently admitted to a neurology ward. They did not even ask why ? (It was through severe physical ill health). That’s how kind and humane this ‘doctor’ was.
Take care. x