ICD 11 Stigma I’m not violent

Sheffield

Dear Peter,

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.

Yours Sincerely

Sue Sibbald

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About bpdffs

I campaign for better services for people with BPD. I run #BPDchat onTwitter on Sundays at 9pm BST, please join us. I train CMHT staff in BPD awareness and run psycho-educational courses for people with BPD. I am a governor at Sheffield Health and Social Care Trust.

7 responses to “ICD 11 Stigma I’m not violent”

  1. twittleyjules says :

    What are you not? Violent, aggressive, attention seeking, selfish, dangerous…..

    What are you? Sue…bloody amazing x

  2. Lisa says :

    I was diagnosed with personality traits of BPD just over a year ago and wasn’t sure what the hell I was supposed to be. It felt like someone saying you have traits of a cold! Either I have a cold or I don’t!!!!

    I also do not want to be diagnosed with a Personality Disorder mild, moderate, severe (or would that be traits of one!). However I personally dislike being called emotionally sensitive as it makes me feel I can “pull myself together” but I do understand where you are coming from on that.

    Since being diagnosed at end of 2013, I had to leave my job – they said my diagnosis had no bearing on my role and occupational health refused to discuss it. I have been discriminated against in the recruitment process at a large firm due to coming clean about my BPD and I now feel I must deny any mental illness whatsoever. That’s why people like you who “normalise” BPD are extremely important; we’re not “axe-wielding maniacs”!!! I think the work you do is amazing; I have attended your psychoeducational course in Sheffield early last year.

    Have you thought about doing an online petition about this? People who actually have disorders are the ones that should be consulted.

    Kind Regards

    Lisa

    • bpdffs says :

      I thinks it is really sad that it has come to this people not consulted and labeled in such a damning way. I agree it’s whatever you want to call yourself that’s important. I am really busy at present I am trying to campaign via contacting people directly but I’m sure someone could do an online petition. It certainly needs addressing I’m not sure what can be done at this stage. Thanks for replying and I hope the course was of help in some way . You take care .

      • Lisa says :

        Hi Sue,

        Thanks for replying. I’m not used to people listening. It did help a great deal, particularly the video. Thank you, you’re doing a great job.

        Lisa 😃

  3. Adam Taylor says :

    Hi,
    Just read your “ICD 11 stigma I’m not violent ” and found it very interesting. I was diagnosed in 2007 at the age of 39 and following a break down of sorts to be suffering from BPD, depression and anxiety. I have never classed myself as violent towards anyone and the only act of “violence ” has been towards myself in the form of self harm. After several years of learning about BPD I came across the term “the quiet borderline ” on YouTube and finally found a term that I think fitted my version of Bpd and found relief that I was not alone and that other sufferers felt the same. Before that I could only find stuff that seemed to paint all people with bpd as aggressive and violent and I knew that I wasn’t like that.
    I think that I have been lucky in the sense that the people that I have told that I have bpd, I haven’t suffered any negative feedback, at least not that I know of. The job that I had at the time of my diagnosis, the company was excellent and very sympathetic.I only tell people of my bpd so that hopefully they can understand why I am like I am. Having spent all my life with the condition a lot of my thoughts are not the same as “normal ” people’s thoughts (whoever normal people are) but I am a lot better now. My biggest problem has been with the NHS. Over the years I’ve had umpteen care co-ordinators with varying degrees of success, some good, some bad as is my present one. At the time of my diagnosis I was told the type of therapy I needed wasn’t funded by the NHS and if I wanted therapy it was something I either had to fund myself or go without. After they deemed my crisis was over they more or less washed their hands of me but eventually I did manage to get on a DBT course.
    I had another crisis at the end of 2013 when my partner was diagnosed with cancer and I saw a pyschairtist and told him that I was struggling mentally with the pressure and he agreed that I need counselling. All that has happened is I was given a care co-ordinator that I can’t relate to and told I would have to wait a year for counselling. The NHS now does the type of therapy that I need but I’m still waiting (since Dec 2013).
    Sorry I’ve rambled off the original subject, something that I’m prone to do once my brain flips into overdrive and off I go.
    Keep up the good work and look forward to following you on twitter 🙂

    • bpdffs says :

      Thank you for telling your story there is hope which is lovely but I find the same story repeated over and over that the right therapy is not available at the right time when people are ready for it. I’m worried by the new ICD11 coming in next year but I’m Hoping to get the message across . Thanks for taking the time to comment on the blog you take care

    • Stuart (@StegoPax) says :

      Very well articulated Adam and as Sue says below, so very familiar to us all.

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