BPD – When your text book tells you you’re a manipulative, deceitful attention seeker

A few weeks ago I was trying to poke my eyes back in and pick my jaw up off the floor after reading the personality disorder chapter in Occupational Therapy in Psychiatry and Mental Health (2014).  This is a chapter that described people with the diagnosis as, among other things, manipulative, deceitful and dangerous to students.  At the time I wondered what it would be like for OT students to read this chapter and have their views shaped by it.  I also wondered what it would be like for someone with this diagnosis to read the chapter and find out that not only one person thought this about them, but that the view was so uncontroversial it could be peer reviewed and put in a textbook.  It just so happened that an OT student who has this diagnosis did read that chapter.  This is what @hattieporter_ (follow her on twitter) had to say….

Keir provides training, consultation, therapy and supervision around what gets described as personality disorder via www.beaconsultancy.co.uk

Hi, my name is Hattie and my personality is “inflexible, maladaptive, rigidly pervasive and deviate[s] from cultural standards”. At least that’s what my medical records and a quick read of Ann Nott’s ‘ Understanding Persons with Personality Disorders: Intervention in Occupational Therapy’ may lead you to think. I don’t tend to write this in my tinder bio and it rarely makes it onto my CV.

The chapter, in Occupational Therapy in Psychiatry and Mental Health (2014) Edited by Crouch and Alers, was incredibly painful to read with some parts which feeling too raw to comment on. The content not only makes sweeping, unsubstantiated (and at times weird) generalisations, but shows total indifference towards people’s pain, suffering, trauma and even death. What hurt the most was how every line felt like an echo of the abrasive language I have heard over and over again; there wasn’t much in the chapter I haven’t had someone say to my face.

This chapter purports to “give a broad outline of personality disorders and to clarify issues surrounding them” in the same breath as discussing the “clinical handling of behaviours such as manipulation, lying and deceit”. For me, the only thing this chapter clarifies is that the professional and institutional stigmatisation of personality disorder diagnosis I have experienced is firmly supported and legitimised though academic literature.

I was diagnosed with borderline personality disorder at the age of eighteen and was left desperately trying to figure out if this was an illness or an insult. I soon learnt that, essentially, it would serve as both; and I would have to navigate not only my symptoms but the secondary trauma of carrying such a stigmatising label. A label which was, at times, used as a justification for what I can only bring myself to describe as abuse.

But, of course, this chapter is not about the challenges of living with a diagnosis of a personality disorder, or indeed the symptoms (which are traumatic in separate ways) but about the challenges faced by professionals. It notes “people with personality disorders are associated with poor treatment outcomes as these disorders as so time-consuming”. I can assure you, no matter how difficult it feels for a professional to manage, it will never be as time-consuming as it is for the person living with it. And really, I cannot think of many conditions which operate with part-time contracts.

What this chapter misses, besides even basic compassion, is question marks. In fact, it explicitly tells us to “focus on behaviour and not an explanation of behaviour”. We don’t need to make excuses and we don’t necessarily always need explanations of behaviour, but we need to remember that there are explanations. That as humans we are shaped by the things we live through and some experiences are more corrosive than others. We can never begin to change behaviour without considering the purpose it serves and ensuring those needs are met in another way.

We hear that people with a diagnosis of a personality disorder are “deeply ingrained in maladaptive behavioural patterns”. I have certainly felt incredibly stuck, but my “maladaptive behavioural patterns” are my survival and, whilst it may look like malfunction to someone else, it is the reason I am alive today. Some people’s survival is not as pretty as others.

The chapter nearly considers the telling points of gender disparity across personality disorder diagnosis and the over-representation of LGBTQ+ people. However, dismissively choosing to use the term “sexual identity disturbances”. My ‘unstable sense of self’ certainly wasn’t helped by growing up in a world which taught me a core and integral part of my identity is yet another way I am “disturbed”. Personality disorder diagnoses are political and deeply embedded with wider societal inequalities; our experiences cannot be understood without recognising the impacts of that.

But this is not about one chapter in one slightly-dated textbook. This was not written in a vacuum, but is emblematic of the firmly laid foundations of stigma and prejudice around personality disorder diagnoses which is pervasive across all healthcare professions and settings. As the chapter notes, “the person [diagnosed with a personality disorder] is much more likely to refuse or ignore psychiatric help [and] point out the therapist’s problems”. What the chapter doesn’t say is how often people with a diagnosis of a personality disorder are themselves ignored. How often we are refused psychiatric help on the basis that we are ‘too complex’ or ‘treatment resistant’ or that everything we do is a ‘just attention-seeking’ anyway. The chapter doesn’t tell us how often this refusal of treatment ends in tragedy.

With the risk of sounding salty, I can’t help but point out how this chapter is an excellent example of ‘black and white thinking’ with its grand generalisations and, in its own words, “extreme [thinking] on either end”. What I have learnt through extensive dialectical behaviour therapy is the importance of holding two seemingly conflicting ideas as both true and important. Perhaps some people with a diagnosis of a personality disorder can be a challenge to work with, but at the same time we are individuals and we are humans. Treat us as such.

In my time using mental health services I have been fortunate to meet some of the most incredibly kind and compassionate people who believed in me during the times I didn’t have an ounce of hope myself. What made a difference was a simple as being viewed and treated as a human being; not being categorised based on the endless diagnoses I had accumulated; and being listened to and most importantly believed. Conversely to what this chapter suggests, working with people with a diagnosis of a personality disorder is really not vastly different to working with any other client group.

It terrifies me to think of fellow occupational therapy students reading this chapter, and carrying these abhorrent attitudes into practice with them. Students are the future of occupational therapy and we need to be part of creating change and reform to mental health services. Where this kind of content, which breaches professional and ethical guidelines lacks any level of compassion is being provided to students, I fear we are risking the same abusive practices we have today being replicated in the future.

As I have said before and will never stop saying, there is nothing you can learn from a textbook which is more valuable than what you can learn from the voices of people. If you want to know how to work with people with a diagnosis of a personality disorder, a good place to start is to ask us.

My other piece of advice is to avoid reading this chapter at all costs.

Hattie

____________

(Keir again) Just as a follow up to the above I’ve emailed the editor of the book and the commissioning editor. I’ve had no reply from my email and while the commissioning editor has offered to put me in touch with the editor, he hasn’t responded to my request to place a warning against this chapter in the Ebook.  I’ll chase him up again soon but – Would people be interested in a joint letter to Wiley asking them to provide a warning in the E-copy of the book?  Comment below, to @keirwales on twitter or Keir Harding OT on Facebook.

Keir provides training, consultation, therapy and supervision around what gets described as personality disorder via www.beaconsultancy.co.uk

3 thoughts on “BPD – When your text book tells you you’re a manipulative, deceitful attention seeker

  1. I don’t know if my contribution purely as a personality disorder sufferer rather than someone with experience of OT is what you’re looking for but I’d happily put my name to a joint letter. I read your review of the chapter in question, the things they said made me feel sick.

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  2. My sister had BPD and a TBI and I desperately tried to stop her and have her get a neuro-psych evaluation before she gave away (in her will and on the title of the house) her children’s inheritance to a man who manipulated his way into her life with compliments. My sister was highly intelligent and I believe she thought she would outlive him but that did not happen. Yes, everyone is an individual and as OT’s we should not judge or except a textbook version by the book. I have my own story. I have an acquired brain injury with left neglect, right-hand weakness, impaired visual memory significant brain atrophy of bilateral hippocampal volume loss as well as significant atrophy involving left superior parietal and right parahippocampal regions. An old hot pack exploded at work and I have been detoxing high levels of heavy metals like thallium, lead, etc. for nearly 2 years when finally I was able to get a neuro-psych eval and Brain MRI. Today, in the last semester of the OTD program at my school I am meeting with an official of student affairs so that I can get accommodation in my classes. For instance, I asked my professor if I could get a script of the lectures as I cannot read my own handwriting and I have trouble typing. His response was, “I can but I won’t “I asked another teacher to slow down or write on the board the math problem so that I could figure it out. My request was refused. Both teachers knew I was injured at work and had a brain injury but still, I was refused accommodation. These OT professors did try to accommodate the person in my class who is legally blind. Our class was small, we were 3 students in the Low Vision OTD program.

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    1. I am so sorry you had to experience that. As a person with an invisible disability and OT, I just want to let you know you’re not alone and sometimes my OT lecturers were also the ones limiting, causing barriers or refusing accommodations.
      We’ve got a long way to go -even in the occupation- with practicing what we preach.

      Keep going. Roar loud. Be an OT. Be and advocate. Be kind. Be assertive. And slowly and steadily build a team of supports and mentors around you so you have a sounding board. And join the Disability4OT group.

      @Keir, thank you for writing this. I would be happy to join in writing a letter.

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