A simple guide to avoid receiving a diagnosis of ‘personality disorder’ UPDATE

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It’s been a while since some of our members first collaboratively produced RITB’s satirical ‘Simple guide to avoid getting a diagnosis of personality disorder’ leaflet.

The response has been incredibly encouraging. Many people have been in touch to say how much the ‘instructions’ resonated with them. In addition, it was  also featured in the March 2016 Clinical Psychology Forum magazine.

It seemed to make such an impact it was even nominated for the 2016 Clinical Psychology Forum Award.

In spite of this overwhelmingly positive response, there was also some confusion around the satirical nature of the guide. To clarify, the statements made in the guide are all from people’s lived experience of being diagnosed and ‘treated’ in the system for ‘PD’. The sometimes sarcastic tone of the guide conveys our anger at our treatment within the system and the nonsensical and enraging, circular reasoning we find ourselves the objects of. We want to stress that we are NOT making fun of people with a diagnosis of ‘PD’. We ARE people with a diagnosis of ‘PD’….and we are oppressed by the use of this label. We produce stuff like this because we feel we have no other way of making our voices heard. Please do not write it off as ‘a bunch of angry PDs sounding off’. If you read between the lines of this leaflet you will see the pain and suffering that this label has caused us.


Recoveryingthebin’s ‘Simple guide to avoid receiving a diagnosis of personality disorder’

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We hope to produce more material like this leaflet in the future. If you’d like to collaborate with us please get in touch: personalitydisorderinthebin@gmail.com

mental-abuse

 

 
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Nothing about us without us: ALL OF US

 

This is a response statement to the PD ‘consensus’ survey recently posted on NSUN’s forum.

PDinthebin would like to respond to the recent ‘Personality Disorder Consensus Survey’ disseminated in order to gather views about possible treatment within hypothetical scenarios. This is a collectively written document that expresses our views and needs.

PDinthebin is a group of supportive, often excluded, people who have been diagnosed with ‘personality disorder’ (‘PD’). We have found the label and the concept to be harmful and we fundamentally disagree with it as a construction of a ‘disorder’. We also disagree with how it is used by clinicians to label people seen as ‘difficult’ and we strongly oppose how clinicians treat those of us with this label.

We feel that ethical research and scoping should be robust and inclusive, allowing for a variety of perspectives. We believe that this survey contains many methodological flaws, in particular, it does not allow space for the views of those of us who fundamentally disagree with the construct of ‘PD’. Nor does it enable those of us who do not wish to approach services for fear of having to accept this label to take part in a meaningful way. This means that we had no way to express what support and help we need from services. Thus far, service users who are happy to have received the diagnosis and identify themselves as having a diagnosis of ‘PD’ have already been given a platform in various forums and consultations on the future of shaping ‘PD’ services. We therefore argue that a consensus cannot be reached nor a common goal established when our voices are repeatedly ignored and excluded.

We represent those people who have been actively harmed by having this label applied to us by services. Our lives and identities have often been shaped by the horrific responses of services to us as ‘personality disordered’ people. We also feel a burden of responsibility to speak out on behalf of young people who are increasingly being told that their personalities are disordered at a vulnerable and formative age.


We believe that:

 

  • For a medical professional to state that our personalities, the very essence of who we are as people, is disordered, is both degrading and inhuman. It is therefore a fundamental violation of the Human Rights Act, Article 3.
  • It is both coercive and an abuse of psychiatric and psychological power to require people to accept and receive a diagnosis of ‘personality disorder’ in order to receive the help that we need to support us in our distress.
  • It is shameful how many of us are not told directly that we have had this label applied to us. We often find out by accident or it is alluded to in our meetings with professionals but never named. This suggests that professionals are aware of how offensive and humiliating this label is and how damaging it can be.
  • It is morally wrong and scientifically questionable to use a label that has been found to have very little inter-rater reliability amongst clinicians (1, 2). This is particularly problematic when the consequences of having this label may be devastating. For example, many people have reported how this diagnosis can: lead to your children being removed or put on an ‘at risk’ register far more quickly; negatively affect decision-making if you apply to adopt children; potentially result in being denied entry to the USA; lead to character assassinations and assumptions of ‘moral defectiveness’ or ‘dangerousness’ at benefit decision panels.
  • It is abusive, and often fatally so, to deny us help within acute mental health care services when we are suicidal and/or acutely distressed. This has resulted in several high profile deaths when some of us have tried desperately to seek help only to be told things like: ‘hospital makes PD worse’, ‘your PD means you’ll always be in crisis’, ‘you’re just attention seeking’, ‘you need to find new ways of coping’, ‘we won’t tolerate this maladaptive behavior’ or ‘you are just acting out’.
  • The construct of ‘PD’ encourages services to disregard what may have happened to us in our lives by focusing on what is wrong with us. This is effectively blaming us for our own distress.
  • We are trapped in a double bind. On the one hand, we are told that in order to ‘get better’ we must take responsibility for our ‘behaviors’. However, on the other, we are simultaneously infantilized by a system that defines and decides what our difficulties are and allows us no say in what might help us.
  • If we are so distressed that we experience psychosis, we deserve the right to access medication and other support to help with this issue. We also deserve the right not to have our psychotic experiences defined as ‘pseudo-psychosis’. This implies that because we have the ‘PD’ label our experiences of psychosis are somehow not real or less so than those without this label.
  • It is totally unacceptable to apply a label of ‘PD’ based on the fact that we may self-harm. Self-harm happens for all kinds of reasons and is not indicative of a ‘disordered personality’.
  • Self-harm has meaning and should be taken seriously by services, not just seen as a ‘BPD trait’ or written off as typical ‘borderline’ behaviour with an assumption that it is merely manipulative.
  • It is iatogenic and counterproductive to replicate the myth that we are ‘challenging’ and ‘complex’ due to our ‘PD’ diagnosis rather than our often traumatic life experiences and daily struggles in oppressive circumstances.
  • The idea of ‘PD’ as ‘complex’ and ‘difficult to treat’ often enables professionals who do not declare themselves to be ‘PD specialists’ to distance themselves from us and deny their responsibility to provide empathic and humane treatment.
  • It is unjust that the ‘PD’ label is often considered to be an aggravating factor in the criminal justice system, unlike other mental health conditions that may be seen as mitigating factors.
  • The dominance of DBT and MBT is helpful for some people but many of us have found it be oppressive, pathologzing, blaming and harmful. We are left with no other therapeutic options available to us because we have been labeled as ‘PD’.

 


 

We are advocating for:

 

  • The right to access a range of treatments and therapies that are specific to our individual distress without having to be treated under a ‘PD’ service or label.
  • The right to have our individual narratives heard and acknowledged and not reframed into a construct that is oppressive and blaming.
  • The right to have therapy/or treatment without the constant fear that what we say, think, feel or do will be pathologised, misinterpreted and labelled as a feature of our ‘disordered personality’.
  • The right to have our understandable reactions to trauma and abuse officially recognised and validated and not interpreted as a flaw in who we are or a part of a ‘disordered personality’.
  • The right to not only disagree with the diagnosis but to have it removed permanently from our records, present and historical.
  • Access to treatments and therapies like EMDR, long-term psychotherapy, medication, attachment-based therapies, specific interventions and support around self-harm, patient-led support groups, creative and body therapies, narrative therapies. Thus we are asking for therapies that permit the expression of shame and rage, rather than their suppression of shame and rage. We need therapies that frame our abusers or oppressors as disordered rather than us.
  • Gender-specific and trauma-informed services for those of us who have experienced sexual abuse or violence, rather than a focus solely on cognitive or behavioural approaches. We also call for feminist-informed approaches and services for those of us who identify as female and have experienced extreme disempowerment and oppression.
  • Services that are informed by racial and social justice models that validate intersectional disadvantage rather than psychological and psychiatric models only.
  • A process of truth and reconciliation between services and those of us who have been iatrogenically harmed by the diagnostic process and subsequent treatment.
  • A tolerant and non-pathologising attitude towards our appropriate and righteous hurt and anger with both services and their mental health professionals; many of these people have either stood by and watched this label be used against us or actively participated in its promotion and ideology.
  • The right to have appropriate help for us at times of distress, especially when that distress has led to self-harm. We are fighting for the right to not be labelled as attention-seeking or treated as ‘another PD case’ within primary and secondary services.
  • Training for professionals completely outside of the ‘PD’ framework and ideology. This would focus on enabling professionals to support people without replicating abusive practice. It would also acknowledge systemic oppressions such as being caught in the ‘benefit trap’, the replication of early traumas through on-going relationships, and feelings of mistrust after being abused.
  • The co-production and delivery of training for professionals by a wide variety of people with lived experience, not just those who agree with the construct of personality disorder and seek to gain financially from this endeavour.
  • Appropriate disciplinary action and consequences for both individuals and services that treat us in oppressive and abusive ways. No person who is in immense distress should be left without help or support. No person should be told that we ‘simply have to find ways manage our own distress more effectively’ because we have ‘PD’.

We ask that this statement of need is considered in the planning of any future service provision. We also hope that those of us who disagree with and have been harmed by the diagnosis are meaningfully enabled to join any further discussions around these issues.

For more information or to speak to one of our members directly please contact:

personalitydisorderinthebin@gmail.com

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