Thread by @HZiauddeen

🧵 The problematic diagnosis of Borderline Personality Disorder (BPD)

BPD (aka EUPD, emotionally unstable PD) is arguably the most stigmatised diagnosis (Dx) in MHservices and in the general hospital.

This 🧵is going to cover some of the problems with this Dx.
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Many of the people (predominantly women) given this diagnosis are survivors of complex trauma, who continue to experience recurrent trauma in mental health and physical health services, as well as in other areas of their lives (a frequent & painful legacy of trauma).
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Despite this being fairly well known, in reality the trauma and suffering often receive little consideration, and the Dx is heavily stigmatised, leads to frequent dismissal and EXCLUSION from care, and even frank discrimination, with far too many people taking their lives.
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I don’t have any brilliant solutions or explanations.
I just think that you can only really help people from a position of compassion, not of contempt

This is going to be long (it needs to be) but it will have something for everyone, to be unhappy with.
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I'm not going to defend the Dx. We need something different & better, not just a change of name, but a change of concept and understanding. This is going to take time & lots of different approaches.
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I do think it can be a helpful diagnosis for some people and would not dismiss the value for those who have benefited from it. I think it can work well in the interpersonal realm (between the person and their clinician), less so outside it.
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While we work towards something better, we have to work with the reality that this Dx is firmly embedded in our systems & services, and do better for people in the meanwhile i.e. how do we work to change our understanding & the care we provide within MH services.
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Before I go any further, I should make my motivations clear:
I am a psychosis psychiatrist so BPD and complex trauma are not my primary area of work. I do see a lot of people with this Dx in my clinic given that they often have experiences of psychosis.
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However, this has been an area of interest of mine for many years and increasingly so over the last few. Then a little while back Charley Peitzmeier joined @PaulPcf22 and me to do their PhD on the experience of psychosis in BPD.
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This is a project that has involved a lot of lived experience work and there will be a short 🧵on the study at the end. I’ve been meaning to write this thread for a long time but decided to wait till Charley’s study was ready to launch. This is a selfish motivation.
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Ok, on with the rest of the thread.
First a little bit about trauma because trauma and the responses to trauma are a major part of the construct we call BPD.
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The problem of trauma is both an interpersonal one as well as a systemic one. Societies and services have a role in creating trauma, as well as recognising and responding to it.
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If societies and systems don’t recognise their role in creating adversity and trauma (e.g. deprivation, poor protections for vulnerable members) and the longer term impacts of this, and make provisions for this then the only available solutions are interpersonal ones. .
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Interpersonal measures, like therapy and compassionate care, largely deal with the consequences of trauma. They are absolutely vital, but can really struggle if the wider systems are not aligned similarly.
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And there is a limit to what interpersonal measures alone can do, especially if they themselves are scarce on the ground (as they are). This relates to who & whose needs are prioritised by the system & society and how children and women are not.
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https://twitter.com/HZiauddeen/status/1452275886506582016?s=20

I will use the BPD Dx/construct as it stands at present, with the constant caveat that it is a problematic one. It might be helpful to outline what psychiatric diagnosis are and what purposes they serve.
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Psychiatric diagnoses are descriptions of clusters of symptoms/signs/experiences. These clusters allow one to index conditions i.e. this is the disorder of depression. They do not completely describe the condition or explain it.
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It is perhaps best to think of them as identifying a family of illnesses/conditions that share a similar clinical picture but have a huge amount of heterogeneity under the umbrella of that diagnosis. Making a Dx involves recognising this picture but that’s just the start
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Diagnosis are not very good explanations and to make them so requires one or more models of what happens in the condition e.g. how does the experience of the self and the world change in depression. Otherwise it can just be a symptom checklist.
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Diagnoses serve 2 related purposes in clinic
-Help the person and those caring for them (clinicians and family) understand what they are going through.
-To guide and access treatment.

And a 3rd outside clinic:
-To access accommodations and specific supports & benefits
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BPD as a Dx often fails on both the two key purposes. For many it is a diagnosis that is never, or only cursorily, discussed with them. Many people recount finding out the diagnosis from a letter or seeing it in their GP records.
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This means that even if it might have been helpful, the work was never done to make it so. And the work that needs to be done is considerable, even just to help people with the ‘personality disorder’ part of the Dx.
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It is certainly possible to make the Dx serve the first purpose & people who find it useful and helpful have likely had this. Like I mentioned above, this requires doing the explanatory work using some model of what has happened/is happening for people.
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However very often BPD can become an explanatory dead end i.e. you have BPD because you do X, Y and Z; you do X, Y and Z because you have BPD. The description becomes the explanation and excludes the person.
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If you do the work to make sure the Dx serves the first purpose, then there is the second purpose, does it help with guiding and accessing treatment? This depends on whether there are treatments available to the person and if they would be eligible for them.
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The specific treatments including trauma therapy are nowhere as available as they should be and in many places they are within specialist PD services which often require a Dx to access.
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However, if you do not have, or are not eligible for, these services, the Dx can exclude you from accessing other services. Further given how stigmatised the Dx in MH services, it can be extremely difficult to access care and traumatising to try.
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Stigmatising is probably a bit euphemistic here. The attitudes to people with BPD in health services can be absolutely shocking- from thinking of people as being ‘attention-seeking’ and ‘time wasting’ to outright hostility and contempt.
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The consequences of these range from denial of care, to callous and cruel comments and conduct, to punishment, to being sutured up in A&E without anaesthetic, to people taking their lives in the face of recurrent dismissal and rejection.
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Let’s look at the actual Dx now. BPD does capture many of the consequences of having survived recurrent trauma i.e. it is a reasonable description* of the way; recurrent trauma shapes people.
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*reasonable, not good.

It is important here to think about trauma more broadly and in terms of the particular person. Many people will have gone through experiences that just about anyone would recognise as traumatic e.g. childhood abuse.
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Others may have gone through traumas that may seem to be part of the struggles of normal life e.g. bullying in school. Some may be innately emotionally highly sensitive or struggle to navigate the complexities of the social world (e.g. neurodivergence).
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The last group often have repeated painful encounters with the world, made more so by the fact that most people around you do not seem to share your experience and neither you nor they understand why you find ‘normal’ experiences so painful.
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That said the experience of being in the world can be very painful for a lot of trauma survivors. What is important is to understand is what that person went through and how it impacted them rather than your external reading of their experiences
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To do this one does not need to put the person through reliving all the details of their trauma, it is enough to gather a brief outline and then understand the impact it has had on them, for trauma narratives and responses have recognisable forms.
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In this quote from Trauma and Recovery, Judith Hermann sums up the impact of severe childhood trauma and variations of this apply to other forms and severities of recurrent trauma.
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This perspective is vital to understanding BPD, to not see it merely as ‘how you appear to be in the world’ but understand it as ‘how it feels to be you in this world’. More so than most psych Dx, BPD biased towards ‘what things look like’ than ‘what they feel like'.
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The vital internal experience is often hugely neglected, even when considering internal experiences. ‘You don’t seem like you have a stable sense of self’
(WTF?)
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And what is vital to recognise is the internal experience* of BPD is of frequent, and at times unrelenting, overwhelming emotional pain.

*With complex trauma & ASD, people may struggle to articulate their internal experiences, so you have help them with this.
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So even if you are working with the DSM-IV criteria for BPD, it is vital for each of them to think about the internal experience of the person. What you may observe or have reported to you (even by the person) is just data that tells you what you need to understand.
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And those internal experiences will often include severe emotional pain, intense emotions including empathy that is often painful (‘like being in the world without a skin), difficulties being in the world, trying to survive each day at a time,...
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https://twitter.com/HZiauddeen/status/1448650799148515333?s=20

…, living with frequent thoughts of self-harm and suicide, of seeking relief from the pain, even if it puts one at risk, not caring at times if one is at risk because one does not care what happens to oneself,…
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https://twitter.com/HZiauddeen/status/1466524443103178756?s=20

…,the struggle of relating to & trusting others, of wanting love, care and understanding and giving the same to others but risking and getting crushing disappointment, of spells of numbness, emptiness and dissociation.
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And of finding oneself overwhelmed by pain, feeling unable to keep oneself safe because the urge to kill oneself is so intense, having already grievously harmed oneself, and turning to health services to be repeatedly rejected, dismissed and retraumatised.
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The last bit I would particularly emphasise. For a lot of people with BPD and complex trauma, there is significant amount of further traumatisation and invalidation that happens in their interactions with health services.
We keep failing this group of people.
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There are multiple factors that contribute to this including stigma, deeply ingrained negative attitudes and beliefs (esp in MH staff) and a lack of provision for people in acute mental distress as well as longer term care outside these states.
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This means that people with BPD encounter services in crises, in A&E, crisis teams & other emergency services, where they frequently encounter dismissal and rejection (yet again). Even if the service is able to help them through the crisis, there is nothing after.
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We keep failing this group of people.
We need to do better. A change of name alone won’t do it. I think that complex PTSD is a more useful diagnosis but do worry that without a significant change in understanding, C-PTSD will end up becoming ‘what we used to call BPD’.
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When you'vecrossed 2000 words and there’s still loads to say, you know that (1) you have failed (2) you should stop trying.

So I’ll just repeat:

You can only really help people from a position of compassion, not contempt.
This can't wait for diagnoses to change.

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Normally, at the end of a post like this I would recommend several people to follow. However in this instance, I will check with them before linking them to this tweetpost, so there may still be recommendations to follow.
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Finally, here is a link to our study for anyone who’s interested and would be willing to give us some of their time.

https://twitter.com/HZiauddeen/status/1469809362118062083?s=20

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Addendum:
Some important book recommendations:
Trauma and Recovery by Judith Hermann (with thanks again to @sadiestrong)
The Body keeps the Score by Bessel van der Polk

Correction to 1st addendum
I got both author's names wrong.
It is Judith Herman and Bessel van der Kolk.

I found van der Kolk's book a very informative one. (It's been a bit sullied by learning that he was dismissed for bullying colleagues)

2nd addendum:
Recommendations for people to follow on this and related matters:
@irumidk @Madnotbad60 @abbiefiler @Feehlo

@irumidk @Madnotbad60 @abbiefiler @Feehlo Would highly recommend following @TalkingAboutBPD who does a lot of good work on Twitter and on her blog, on BPD.