ICD 11 Stigma I’m not violent
I am writing as I have recently read the proposed category names and essential features of personality disorders in International Classification of Diseases (ICD)11. I came across this in The Mental Elf Blog .
I would like to share with you my concerns about this but first will tell you a bit about myself so you can understand where I am coming from.
I have a diagnosis of Borderline Personality Disorder myself and currently work for Sheffield Health and Social Care Foundation Trust as a Peer Support Specialist. I train staff in BPD awareness and DBT skills which I taught myself. I also run groups with people with my diagnosis and their families and friends. I went to Texas self funded to learn more about the DBT group for families and attended a NEABPD course there.
I also am well known on Twitter and created a chat for people with BPD which has run for three years now. I speak to people on there such as Alys Cole King who I have co-written a chapter for a book for the Rcpsych soon to be published called women and mental health and our chapter is around self harm. I also chat to Geraldine Strathdee of occasion recently around a DHGovUk publication the easy read MH code of practise showing a man with personality disorder with fists raised …. which I guess is what brings me to why I am contacting you … oh and I got the booklet image changed thanks to some great support.
I have watched with interest the ideas coming forward for the new ICD11 PD for a while now and have come across a couple of your power points on the internet. I was also interested by the DSM V and their decision not to change onto the dimensional model.
I have to state here I dislike the name BPD and PD I call myself an emotionally sensitive person as I see emotional dysregulation as the core to all of the problems people need to work with who have the diagnosis of BPD.
My worry with the idea of everyone being called PD is going to increase the stigma for everyone. Not everyone is violent with a diagnosis of BPD I know I am not and I can guess people with avoidant PD are not at all. If I am to tell someone I have PD and they are associating it with people with a diagnosis of ASPD those who may be very violent then I am tarred with the same brush. Mud sticks and I am sure as time goes by there will be more and more articles in the press as Personality Disorder becomes as well known as schizophrenia.
When I was diagnosed five years ago I had not heard of it and my mother has schizophrenia so I know a bit about mental health, and oh you may remember me I was at a conference that you Anthony Bateman and Proff Tim Kendall were speaking. I took the microphone and said the stigma comes from clinicians and I still believe that to be the case, although not all.
My point is if we are all given the same label and we are all so different in so many ways but we will be seen as the violent people in society and that is not the case and I know as I work with and am in contact with hundreds of people with BPD. I and they are not what you and WHO describe us as and we don’t fit neatly into the boxes you have created, those being mild , moderate and severe personality disorder.
I see lots of words to do with violence, violent episodes, hostile and confrontational behaviour, fits of temper, insubordination, conflict with peers, conflict with others, burning down someone’s house down in anger. This is not all of them and we are not all like that, this sounds like words from a forensic setting not the average person with BPD most are in the community.
I use words such as hyper vigilant, traumatised, creative, empathetic, emotionally sensitive that helps people with acceptance that shows empathy.
Could I ask were any people who use services involved in the writing up of these criteria, I ask as they seem to lack any empathy and don’t mention the dreadful trauma most people have suffered. It is stigmatising.
Imagine reading that about yourself when you are young and newly diagnosed what hope would that give you…? after all hope opportunity and control are the three requirements for recovery just what if like me you are not violent able to hold down a job but are very suicidal from time to time and self harm ? Which box am I fitting into …? In my opinion we don’t fit into these boxes we are all individuals.
I have shown the blog to people with a diagnosis of BPD and most people say they fit into two categories and I was told I must be cured as I work. We just don’t fit.
As I mentioned earlier most people up to 70% have suffered some sort of trauma as children I think receiving this diagnosis will not give any compassion to these people who no fault of their own have been abused . They are in this set of criteria described as violent which is so stigmatising and not true in many cases. Why do you see violence as necessary? Surely this is just for the main part for those with Anti Social Personality Disorder.
Also can I ask is the idea to ‘undiagnose’ those with a diagnosis that doesn’t fit into boxes meaning some severely traumatised people who manage life without being violent will receive no help? My fear once again it will be hard to now access treatment particularly for those who have been abused.
I would like it if the trauma could be acknowledged and there is less focus on violence as this will lead to increased stigma and acknowledgement that people do not fit neatly into the categories .
I have to also say I have gained a lot of support from my peers with BPD via the internet and have met in real life there is a thriving online community. I wonder how we will meet if we are all just named PD?
Overall I am not sure the people who use services have been thought about I am extremely concerned and I am not sure if there is anything that can be done or if you accept feedback.
I do not want to be Sue PD mild, moderate or severe .
I hope to hear from you soon that would be kind.