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Borderline personality disorder and work
Posted Tuesday 17 May 2011
This guest blog is part of our series on mental health at work for Mind's Taking care of business campaign.
Long before I even knew the name of the condition I was living with, I was acutely aware of how I just didn’t seem to ‘fit’ in the workplace.
During my working life I have tried everything from office desk jobs to working as a full time musician (and everything inbetween), which might seem quite random, but fits perfectly with my diagnosis of Borderline Personality Disorder.
If you’ve never heard of BPD before, you might like to check out a short blog I wrote at the beginning of the month explaining it in everyday terms. Essentially, it is a disorder which affects your emotions, meaning that you can experience incredibly dramatic shifts of intense highs and lows, impulsive behaviour, feelings of chronic emptiness and self~loathing. All of which doesn’t exactly fit into the typical workplace which expects stability, rational thinking, the ability to change and deal with constant pressure.
During my time working a 9 to 5 desk job following university, I found that I was completely unable to deal with the stresses associated with sudden changes in workloads and constant upskilling. Having no formal diagnosis in my early twenties meant that I was incredibly self-depracating, as I couldn’t understand why I was the only one in the office who couldn’t cope with the most simple of tasks. I had been educated to degree level, had the whole world to discover and watched my friends climbing the career ladder whilst I remained unfulfilled, depressed and hopeless. The impulsive nature of the condition meant that I would flit from job to job, never truly settling on any one particular career, and finding it increasingly difficult to ‘explain myself’ to colleagues.
In my mid-twenties I made the decision to return to my musical roots and study a Masters Degree in Digital Performance — a one year course which allowed me to immerse myself in the exciting world of Music Technology combined with playing nine instruments and songwriting. It was at this point that I realised that my future lay in harnessing the creativity which is so often increased in people with Personality Disorders.
Obviously, there aren’t that many jobs available for full-time musicians, and it is in itself a highly pressured industry to work in. However, I firmly believe that when you begin working in an industry which you feel strongly about, much of the stress and anxiety can begin to abate as it becomes a fulfilment of your passion rather than ‘just a job’.
Working as a full time musician was incredibly difficult, and I could not possibly have managed without the constant support of my partner Nigel, who also works in the same industry as a Producer/Engineer. I also began to get treatment after a very long wait on the NHS, and was formally diagnosed with Borderline Personality Disorder. By understanding my illness and having Nigel’s emotional support, I was able to tour the UK and record an album at a pace that fitted with my mental health needs — something which I could never have dreamed of doing ten years ago.
I now work part-time as a musician, and part-time as a trainer for people who work with those with Personality Disorders through a fantastic organisation called Emergence. When I’m asked what I do for a living, I take great pride in saying “I’m a part-time musician and mental health trainer.” Working flexibly to allow me to take the breaks that I need.
My advice to those living with mental health conditions is to remember that there is no shame in being open about what you need — if you can manage part-time work or volunteering, doing *something* that sets you alight is so important. You are the only person who can dictate what is right for you, and as organisations like Mind are increasing awareness of positive mental health in the workplace, you’ll find that more and more employers are really supportive.
Having family or friends to help keep you on track is a great way of sharing the burden, so don’t be afraid to talk. You’d be surprised how many people are willing to listen.
Kayla Kavanagh
www.kaylakavanagh.com
Read Mind's information and advice on work, whether it's how to stay well at work, dealing with stress or workplace bullying.
37 Comments
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"You’d be surprised how many people are willing to listen" - not if the diagnosis is BPD Kayla, services still exclude because it's not viewed as a 'mental illness' it's viewed as the person has 'control' over their throughts and actions and simply needs to learn how to 'regulate' them. PD is not generally respected within mental health services and you'll never see a celebrity or actor 'come out' with a BPD diagnosis.
There's also little out there for people who don't agree with this diagnosis and view it as a fundamental invalidation of them, thankfully there is now the Coalition for the Abolition of the Borderline Personality Disorder. This even more important for those who dissent and don't want it 'more understand' and reject that definition of their lives, because of the moves to align BPD more with anti-social PD emphasising the alleged 'lack of empathy'.
It's quite different 'being open' about PD as opposed to Bipolar, depression or psychosis - these diagnoses are at the top of te diagnostic hierachy and viewed as being out of a person's 'control', therefore a 'proper' 'illness' and more 'deserving' of support. I don't hold these views myself I'm merely relaying typical thinking on this issue.
People cannot dictate their own needs, less so now, it's no longer acceptable to do voluntary work other than as a short term 'stepping stone' and can in itself jeapordise benefits [some people have lost them for doing voluntary work for Trusts]. It's not accepted as an outcome.
I think the recent Guardian article of the rise of hostility against disabled people demonstrates that it's not that safe to talk, maybe it's slightly easier in the acting/music/showbiz industry because of the perceived link between creativity and distress but it don't cut the mustard in a supermarket.
Working flexibily would be great but the current system doesn't easily allow for that with a hop on/off system where people could work as and when they can with a secure income in between. -
I think you are right and in life you should do what you feel is good and right for you and never because you "think" it is right and good. Whatever makes us happy and motivated is always what's best..
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How'd you get your diagnosis? My doctor laughed me out of her office when I suggested BPD even though she knew nothing about me and my life. They just throw more AD's at me at higher and higher doses until they become ineffective
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To Mindreader -
I highly recommend you get in touch with the organisation I mentioned in the article (Emergence - http://www.emergenceplus.org.uk) - they have been working hard over the past two years with the Department of Health on the programme "Personality disorder: no longer a diagnosis of exclusion". You can take a look at policy implementation guidance for the development of services for people with personality disorder online at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4009546
The KUF Training that I am involved in is aimed at professionals who work with people with PD, and as it is gaining momentum more and more people across the UK are starting to understand how to work with people with the diagnosis.
To Ellen -
Thank you very much!
To vague -
I was referred by my GP to have a formal Psychological Assessment, but wasn't seen for almost 2 years and eventually found my diagnosis by requesting my notes!
It is a difficult diagnosis, but with organisations like Mind and Emergence continuing to dispel the myth that Personality Disorder is a wastebasket diagnosis, Services will hopefully start to take that on board as well as society!
Kayla
www.kaylakavanagh.com -
To Mindreader -
I highly recommend you get in touch with the organisation I mentioned in the article (Emergence - http://www.emergenceplus.org.uk) - they have been working hard over the past two years with the Department of Health on the programme "Personality disorder: no longer a diagnosis of exclusion". You can take a look at policy implementation guidance for the development of services for people with personality disorder online at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4009546
The KUF Training that I am involved in is aimed at professionals who work with people with PD, and as it is gaining momentum more and more people across the UK are starting to understand how to work with people with the diagnosis.
To Ellen -
Thank you very much!
To vague -
I was referred by my GP to have a formal Psychological Assessment, but wasn't seen for almost 2 years and eventually found my diagnosis by requesting my notes!
It is a difficult diagnosis, but with organisations like Mind and Emergence continuing to dispel the myth that Personality Disorder is a wastebasket diagnosis, Services will hopefully start to take that on board as well as society!
Kayla
www.kaylakavanagh.com -
An interesting blog Kayla and I'm glad you've managed to find the balance you need with work and have the support of your partner.
I was diagnosed with BPD 3 years ago having already been diagnosed with depression 4 years before that. At first I thought it was a bit of a nonsense diagnosis; one that I was given just to explain my constantly changing moods and behaviour. Now I've actually taken the time to read about BPD it describes me perfectly.
In the last year I have been made redundant twice and although my diagnosis wasn't given as a direct reason, I know from speaking to managers who are still there that the constant not knowing what mood I'd be in or how I'd react to a change in workload was a constant drain on all around me.
I am now trying to find work at a slightly lower level (my last 2 roles have been as an FC in global companies) in the hope that there will be less stress but this in itself is causing problems. Firstly I seem to be over-qualified for a lot of the roles so I can't even get an interview. Secondly I seem to have a very low boredom threshold so unless I am doing a job with hundreds of things going on at once I get bored and stressed! Finally, I am so worried about my emotions being out of control in my next role that I just want to hide away at home.I'm on ADs for my depression and they seem to be doing their job. I'm also on mood stabilisers for my BPD but even with them I can't seem to keep my emotions in check. I've tried all therapies that have been suggested to me and I know what I am meant to think and how I should behave but my irrational brain seems to overrule the rational bit! All in all very frustrating & I wish more people understood the illness so it was easier to talk about.
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Problems with lack of flexibility and existing expectations regarding employment are problematic for those with the whole range of invisisble health condtions and variable or unpredictable symptoms.
This covers the acceptance/validity of the person's diagnosis (among health practioners, employers and colleagues), absence management and workplace policies, the style and constrictions of work patterns in terms of number of hours, pace and place, contract requirements etc
Current climate has refocussed attention on the notion of the deserving, and therefore the undeserving, 'poor'. Government is repeatedly stating there is no money to support lots of benefit claimants and therefore only the most deserving will qualify. This means your (and mine) health, wellbeing and dare I say it happiness, is not the focus of assessments, whether in or out (especially out) of work.
It would be nice to think that the experts in our conditions were the people with input on questions around employment and its effects both good and bad on us as inviduals and how adaptations and accomodations would allow us to attain and sustain appropriate work. It would be nice to think that our income needs were assessed and met through a fluid system of salary and or benefit as we coped with more or less work as our conditions allowed. This is not the case.
You either have a job, which expects you to be there most of the time, turning in a very good performance in circumstances that suit the employer, or you don't, in which case you will have to continually prove you are actively seeking work in order to receive subsistance JSA benefit or battle the system which ignores all your healthcare experts records and opinions in deference to a very limited asessment as to your fitness to work in order to receive a little more cash and a little more 'support' in seeking work.
Being in work is the default position, other outcomes are not acceptable or seen as luxuries. Back to that 'deserving?' tag again. -
I'm aware of Emergence but I don't support it's aims, I support CABL's, PD is used as a waste basket diagnosis, people get it for spurious reasons and I don't support the premise of personality being 'disordered'. As for DH guidance, like NICE guidance it is just that - guidance, it's doesn't change attitude and thinking, it doesn't change practise. Just as the self-harm guidance hasn't stopped punitive practises in A&E. All you have to do is listen to staff speak off record about people defined as PD - it's rarely complimentary, and it's not viewed as an 'illness' it's not classified as a 'mental illness' in the DSM.
What saddens me is that this diagnosis makes people afraid of themselves, policing their own emotions as though there's some scale of what is a 'normal' amount of emotion to express. When service users refer to having a 'dysregulated day' they sound so 'trained' by their service providers in thinking this way, who else would ever say that?!
I'm saddened that some people seem so keen to be diagnosed as such because you would be horrified if you saw your notes and saw what they really think of you, Read some of the clinical papers, that will give you an idea. -
Many of the views that you have articulated especially around punitive practice and pejorative judgements that still pervade care giving services are part of the very reason that an organisation like Emergence exists. We believe very much in challenging stigma, misunderstanding and unhelpful practice through education and training. It is true that a guideline is only that and will have little impact unless it sits alongside an authentic cultural change. It requires commitment and enthusiasm to take the guideline off the shelf and turn it into a meaningful reality. We know all to well what may be said off the record about service users, but the KUF awareness training has made a significant impact towards challenging attitudes and such attitudes are changing, albeit slowly. The tone in which Personality Disorder is written about is changing also, it is now viewed more optimistically with recent research findings illustrating good practice and effective treatment outcomes.
As an organisation, we do recognise that the term personality disorder is often regarded as an unhelpful term and as a standalone statement , it often does not help those who end up with the diagnosis. Many describe how the use of the diagnosis has been levied punitively and inappropriately.. Many within Emergence would like to see the diagnosis changed or the set of difficulties associated with personality disorder described more helpfully and appropriately, but that being said there are some excellent services across the country who provide care and treatment specifically for personality disorder and the very fabric of their existence is contingent on the existence of that particular diagnosis... At the end of the day, whatever the diagnosis is called, the service user with the chronic and enduring difficulties will still have needs... I am asked constantly what I think about the label, and I think quite passionately its less about what it is called and more about what happens next.
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We should be about re-education not lambasting those who get it wrong... a culture is never changed by just demanding it be so, it is essential to understand and work with why that culture exists in the first place.
Emergence is passionate about empowering service users to become trainers, artists, managers, to use their past difficulties in a new way so they become more than just a label, they become a person of huge worth and capability. This for me is the very best way of challenging stigma and Kayla is a very fine example of that.
Kath Lovell - Managing Director of Emergence
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A beautiful and perfectly honest account as always. You are doing such a wonderful job in inspiring so many, you have my support as always.
Charlotte -
That culture exists because of how the diagnosis is viewed and it's everything about what a person is called. What we call each other matters and the definitions attached to names shape how people think. Schizophrenia was transformed by the hearing voices movement which really has helped to shift thinking, even the term 'voice hearer' has no automatic theoretical model or explanatory framework attached to it and has allowed people to define themselves.
PD has no hearing voices movement equivalent.
Apart from a couple of better services with their well known consultants the picture is much harder for people at local level where services do not see beyond the label. You have to accept Kath that not everyone shares Emergence's vision and there's little tolerance of people who wish to see the category removed from DSM and who don't wish to be PD label apologists. You'd get short shrift from the people stuck in medium and high secure services. -
Kath – earlier in the year when people on other threads spoke of their suicidal feelings in relation to welfare reforms it was you who implied this was somehow borderline, you inappropriately attached that to people’s wholly legitimate feelings. People had referred to feeling this in the Guardian, on many blogs/forums including people with physical and sensory disabilities with no mental illness or PD history, yet it was you who suggested this was somehow borderline of people to feel that way.
You are not fundamentally challenging the way people are perceived and treated but supporting and promoting standard medical thinking just with the caveat of making it ‘better understood’ and ‘less stigmatised’. You can dress that up with nice positive thinking/examples/guidance/changing culture/educating rhetoric, and dismiss dissenting voices as “lambasting” but you are not standing for anything progressive from where I’m standing.
I respect anyone's right to be in concordance with any diagnosis and medical definition but I simply don't see PD activism as a broad umbrella -
Mindreader - I'm really sorry that you feel that way. Clearly you have been through a very difficult time and I completely appreciate how frustrating it can be living with the stigma of a Personality Disorder. Everyone is individual in their experience of PD, which is why it is such a difficult condition to diagnose and treat - however it is ultimately entirely up to the individual whether or not they choose to embrace or discard the 'label' of PD.
I know that many of my friends who also live with PD found being diagnosed initially quite frightening owing to the stigma attached to the illness, however by understanding the reasons behind 'why' they feel how they feel has helped in their recovery.However, not everyone feels that way, and that is entirely their prerogative. I know a few people who dislike the diagnosis and the terminology, and that is absolutely fine - nothing wrong with that at all! Speaking for myself I know that I spent almost 30 years of my life thinking I was the only one in the world that felt this way, and by having the diagnosis it was a massive relief to be able to understand that there is a reason behind it.
I think they key thing that is missing here is that the purpose of this blog was simply to explain my own story of how *I* have felt with my diagnosis, the massive help it has been to be a part of Emergence and I will continue to campaign against the stigma of PD. The point of the post just to show how it is possible to have a working life when living with a mental health condition, and again it is my own experience which is not intended to represent the views of everyone with PD :)
Thank you to those who have continued to be so supportive in the fight against stigma - particularly to Mind, Emergence and Uncovered Magazine who have been real pioneers in raising positive awareness of Personality Disorders.
Kayla x
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I have to agree with mindreader. Ever since I was 'diagnosed' with BDP (by whom I don't know they left it up to my GP to tell me) I have felt a horrible black feeling inside, as if I am a bad person. This leads to anger because my rationality is that if the so called experts think you are just 'disordered' and have no mental illness then please don't expect me to show empathy to others. This is not me, and I do help others but too often I feel the rage boiling inside and become paranoid at how others perceive me. I no longer read articles relating to BDP because as far as I am concerned they are dehumanising. I have been told I am untreatable, that is what my GP was told so that is why I am never referred whatever state I get in. This is probably the case for many, I am stuck with this label for life, lucky if I ever get employment again. Kayla yes I know where you are coming from, but I want this label struck out of the DSM, it really is so damaging and I wonder who really benefits from it. Imagine being in the depths of depression (treatable) and being told you are untreatable.
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That's ok Kayla I'm quite happy with my views, and yes I have been through a difficult time but not because I have diagnosis of PD because I don't, but because very dear friends of mine have suffered because of the diagnosis.
My friends are not frightened they are angry and don't need to understand why they feel angry, it's quite easy for them to understand their legitimate feelings, and finding like minded people outside of PD organisations is what has helped them to recover their identities.
I appreciate the blog was about your experiences and story but it's also an opportunity for dissenting voices which are not given a plateform most of the time -
@Kath - just because there isn't a perfect system worked out yet it doesn't mean we should continue to tolerate a system that gets it so spectacularly wrong.
You know what I've seen online in the past couple of days? That programme on the other night about the prison, everyone "shocked" that they heard staff talking about personality disorders as separate to mental illness. There's your problem right there! You can build an organisation with the admirable aims of breaking down stigma, you can write guidelines of "we must treat these people as people and not chuck them in the dustbin any more" but when it comes to the sharp end nothing has actually changed.
I don't have BPD. I've been "diagnosed" on the spot by nurse practitioners in emergency departments putting 2+2 together and coming up with 27 simply because I flinch when they ram a needle into my arm (must have been abused because I flinched, and we all know self-harm + abused women = BPD). I have been pressured by mental health staff to attend PD services saying "I know you don't have BPD but I don't know what else to do with you", then discharge me on account of being uncompliant (a large part of that so-called uncompliance being a simple unwillingness to attend an inappropriate service, the rest being a plain old fashioned lack of recovery - yes! Let's discharge people because the nurses are incompetent, brilliant idea!) I have sat in front of a consultant psychiatrist and been told "You don't have BPD but you self harm so I'm going to say that you have BPD".
BPD = BS Punitive Diagnosis. If you don't recover in time according to their targets, if you don't fit in a box, if you are slightly more complicated than a depot injection twice a month then all of a sudden you are Difficult, Uncompliant, Playing the sick role, BPD. And if you dare to disagree with the diagnosis, it's taken as further evidence you actually have it...
A BPD diagnosis is just as much a slap in the face today as it's ever been. -
Spot on Linda & Ginger I'm right beside you and these are the issues the PD organisations and charities are not addressing. These are the issues which never get a plateform at conferences and in the mental health magazines.
I've seen my friends with this label struggle to be taken seriously and get any support whatsoever because they are blamed in a way that no one with depression is. I've seen a couple die with this diagnosis because no one took their suicidal feelings seriously because psychiatric thinking is that it's not to be taken seriously in people with this label because 'they' apparently are 'always' feeling that way, unlike someone with another diagnosis who should be taken seriously - this is from the mouths of mental health workers.
I saw some of the Strangeways doc too Ginger, it's so clear in the prison service as well, there are these properly sick people with mental illness, then there are these people with PD who are not sick, who know exactly what they're doing and need to just take control and stop it. Some names cannot be rehabilitated into something sweet & fluffy and PD is one of them. -
I've been under Mental health services for 10 years now, 6 years ago I was diagnosed with BPD. I was not treated any differently by the services when I had been given a diagnoses. I agree there is a stigma around the diagnoses but its not just the diagnoses, within mental health it is also the symptons so even without the diagnosis the treatment remains the same.I have also seen a difference over time and I am currently receiving good care and am making good progress and I no longer feel as isolated within mental health, as unfortunately some people still dont like us! I find it difficult to understand how extreme negative views are going to help your friends and indeed around the stigma of BPD or self harming because in reality they are treated in the same way because they posses the same symptoms, causes and solutions. I find it irritating when people get hung up over a diagnoses when the treatment they would receive would not change because that is the way that the symptons would be treated anyway, so how much difference would it actually make, to take a name away! The problem still remains.
I disagree that people with BPD do these things out of choice, unfortunately it is a learnt behavier so even if it is in the persons control, they do not know how to behave differently. So yes, it can be cured by learning how to control behaviers but this is a long and lengthy process that not all can manage. It takes a long time to change the behavier as it took a long time to install them, often whole childhoods. In really simple terms you could not bake a cake if no one ever showed you.
A recent campaign springs to mind. If you saw a poster of a child being abused, you would feel sad. If you saw a poster a someone self harming or a drug addict, people often feel they are to blame and should "sort themselves out" what would people think if they knew it was the same person.
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It's great you've had positive experiences of services Blue, really pleased for you, sadly not everyone does.
You have a point about it not only being about diagnosis but also 'symptoms' because self-harm is commonly difficult for service providers on many different levels, some about their fears and wanting to 'make it better', however there is a world of difference between presenting to A&E with self-harm with a diagnosis of BPD and a diagnosis of depression, there's no getting around that one.
Names really do matter because they shape how people are viewed irrespective of 'symptoms' in a fundamental way and the name can be cited as the entire context almost irrespective of life history, some practitioners will cite the diagnosis as the context.
Taking the name away doesn't of course remove the distress of course but it removes adding insult to injury.
You might find dissent irritating but anyone who is fine with that label has an entire industry and organisations to support you, whereas those who are hurt by the diagnosis have much less support and even told by their peers [as well as by services] that their dissent is simply their refusal to accept it!
I dont think dissent and wanting distress reframed differently is 'extreme' and 'negative'. When the hearing voices movement first started people like Marius Romme and HVN were viewed as dangerous, mad and extreme by those who clung to a medical model of mental health, now that range of thinking is accepted.Acceptance doesn't have to mean agreement.
Those who have dissented have appreciated support from their friends and allies, because they can't get this from the organisations where that dissent is not tolerated. I've listened to women talk through their pain and recover their identity taken from them by this diagnosis, so I don't see this as negative. Poor experiences of services are also something to be learnt from and not hidden away.
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I disagree that distress framed as BPD is "learnt", it's not a developmental disorder anymore than people 'learn' to be depressed or psychotic. It's not uncommon when young people first self-harm to believe themselves to be alone in this experience so it's hardly learnt.
At least a debate is happening here, I view that as positive, we don't have to agree with each other but it's useful to appreciate each others points of views and experiences even if we don't like them. This helps me to help my friends to help counter the typical responses they receive and to feel good about their dissent, that they don't have to accept it.
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It's not just about the name itself, changing the name won't help and I don't think anyone was suggesting that a simple name change is the solution.
I've noticed two trends over the past couple of years, mainly online from bloggers and other personal reports but offline too. First, that some people (a fair few over the past year or two) previously diagnosed with BPD who perhaps tried to disagree with the label having their diagnosis changed to complex PTSD, which is more palatable, less stigma attached to it. However, we then see professionals treat the person in the exact same way as before, it's just the label that's changed to keep the peace. It's almost as if C-PTSD is the new BPD in some circles!
Secondly, I've seen a number of people previously diagnosed with a "severe" illness such as bipolar disorder recover in their own way and then have their professionals say to them "oh well you probably didn't have bipolar after all, it was probably BPD". One person in particular struck me, she had taken herself off all her medication without her doctors knowing and then one day told them "actually I haven't been taking them for months and I feel fine". She was wise enough to get herself discharged before they could get their claws in to any PD diagnosis but before she left there were plenty of conversations about possible BPD instead of her prevous diagnosis.I think it's great if someone's found a treatment or therapy or sewing class or whatever that works for them, but I can't help but wonder about the credibility of BPD when it seems to be often the result of either a failure on the part of the medics (drugs didn't work so she wasn't ill anyway, let's say she had BPD, she was manipulative and still self-harms so it fits) or else an attempt at encouraging compliance by patting people on the head and giving them an alternative label which doesn't sound as bad to the recipient but with full knowledge that it means exactly the same to those caring for her.
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That's really interesting Ginger, I find your observations thought provoking. I have to agree, a name change to 'keep the peace' is no shift in thinking if the same attitude prevails. So we're looking at what attributes & behaviours are intolerable to services and how medication can be used as a deciding factor between illness or PD. I too have observed many women with an illness diagnosis being relocated to BPD over the last few years. Typically this occurs if they fail to improve, question or are non-compliant! There's an essay here on gender and clinical assumptions, one writer I would recommend is Ruta Mazelis of The Cutting Edge, she's a dissenting survivor who's produced that magazine [now online] for many years who's said much about BPD which makes sense to me.
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I may be straying off the point here but I think this is relevant. Society has changed in the last 30 years especially after Thatcher's famous phrase 'there is no such thing as society'. Community cohesion has been eroded, unions have lost any power in the workplace and right now there is no sense of optimism that things will change for the better.
This has affected everyone, for those with mental health problems we feel it acutely. Isolation and rejection is a major factor in ill health. Losing a job especially unfairly, having no redress, no one to talk to about it will enevitably lead to distress. The nuclear family is not enough
to deal with such crisis, maybe in the past there was a neighbour, a friend, sister or mother round the corner where someone could go and talk to-now the premise seems to be 'call the doctor' or 'he/she needs to go to hospital'. In the past the union steward will be there to support a worker who was being bullied and also workplace support from colleagues,now you are on your own. There are also social factors, it might be more acceptable for a young man to scream and shout at a football match or act stupidly when drunk on a Saturday night, not so for a woman to 'lose it' in the back garden of her house. It is no surprise to me that PD has come about during that 30 year period, basically the MH services are not equipped to take on mental health issues that have been exacerated by this change in society. More and more people will be landed with this 'diagnosis' for that reason particularly in this recession. It is a quick and easy 'catch all' and I think they should acknowledge that. -
Well said Linda, an astute observation and highly relevant.
I also see the correllation between a changing society and the rise of this diagnosis. Tyrer estimated a huge proportion of the population [or the 'psychiatric' population can't remember which] had a PD and that all service users should be 'screened'. This figure was in the 70's if my memory serves me right so at this rate within the next 10 years we'll have a 100% rate, there won't be anyone left without one! -
Mindreader
Learnt behaviour, as in a coping mechanism developed by the individual as no other less harmful coping mechanisms had been taught by the care giver. And therefore no knowledge of how to deal with things in a more acceptable/better way.
I've had awful experiences with a and e and crisis teams from when I was 14, it's not all been rosy for me, and back then I didn't have a diagnosis! Yeah when you look at the title and what it means it is hurtful but it's not something I can change and so I concentrate on working through symptoms etc and that works for me. I've been angry for too long and it didn't get me anywhere. Like I said before I receive good care now and I'm progressing. Massively! I know manage to work free lance (fits it with being I'll a lot), keep a roof over my head, maintain relationships, not abuse drugs and alcohol. All of which I could not do in the past. Recoveries a long journey but one I'm committed to, and all I can do is share what has helped me come to terms with various things
Blue
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Blue your anger probably played some part in galvanising your survival, I've never seen anyone survive psychiatry without getting angry at some point! Anger can be a really positive and motivating emotion, many campaigns and people working for change have done so fuelled by some anger at injustice and wanting to see change. I don't think it's an emotion to avoid, anymore than any emotion in extreme might be counter productive, but I know those deemed to be BPD are especially policed for anger. I'm glad you're doing well and I'm sure that's down to you more than anything else [or the diagnosis].
As for 'learnt behaviour', even with the best upbringing people can turn to all sorts of harmful activities! People can also have knowledge of dealing with things differently but what you view as less acceptable and not a good way to cope might not be so to the next person. If it were as simple as being 'taught' 'better' ways to cope then no one would ever get distressed [be that 'illness' or PD].
Sometimes if people didn't do the less acceptable things they might not be here, sometimes people have to do sane things in an insane world which might appear crap but the actions are totally sane in the circumstances. It's not black & white when it comes to how we cope, how we feel, what we view as ok/not ok, and of course 'recovery', whatever that is, that too means different things to different people. Your path and beliefs have been right for you, just as the people I've seen reject their tag and embrace what was pathologised has changed their lives. It's everything else which needs to catch up - to allow people to take what path is right for them whether it's yours accepting the diagnosis and working through 'symptoms', or rejecting it, and everything inbetween. The debate on this thread I know has been important to some people because this has included points they feel they are not allowed to make. -
I've just read through all the comments here and I'm impressed with Mindreaders comments and views.
Simple as, he ( or she :) speaks an amazing amount of truth.
So thanks for that, MR! -
Thanks, I'm glad my comments have struck a cord with you. I just say it as I see it and I know that my truths won't be everyone's truths but what I do know is this, I stand beside and support a growing number of users/survivors who have been harmed by this diagnosis, and this body of people has no formal support or organisation.
I also stand beside the growing numbers of mental health nurses and psychologists who question the validity of this diagnosis and how people are viewed and treated as a consequence. Some of those individuals even work in those services i.e. 'complex needs', another name for PD. Some question privately, others more openly. The 'illness' and 'PD' debate is yet to be fully discussed but it goes to the heart of the matter about how as a society we view distress and the purpose of psychiatry -
Mindreader, I'm disappointed to see that you have sought to hijack a comment thread on an issue which was someone's personal story. I'm also rather surprised that Mind did not remove your extremely offensive comment.
Finally, it is quite clear that you posted the self-congratulatory comment by "It's all in a name".
I would respectfully request that Mind put a stop to the inflammatory comments on this thread, and that we in fact celebrate the achievements of people like Kayla who are working hard to be positive about mental health.
Gemma
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Hi Gemma, Thanks for posting, and I'll take your comments on board. The digital team at Mind do moderate all comments before they're published, and won't publish posts that are inflammatory, offensive or off-topic. Our commenting policy in full is at http://www.mind.org.uk/blog/comments_policy#comments
Moderating can tow a fine line, and any comments here are always the opinions of the individuals - Mind does not endorse them in any way. However, if they're published, we feel they bring something to the discussion. We hope that threads like these can offer a safe and focussed environment to discuss mental health issues, policies, diagnoses... However, the line you quote above is out of order - my sincere apologies. I will remove it immediately.
Do feel free to email me any time with any concerns or feedback - webmaster@mind.org.uk
I hope this hasn't deterred you from contributing to the discussion on the Mind blog.Anna
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Mind, please could you confirm for readers perhaps by checking IP information or similar that I did not post any comment under any other name.
Gemma, I do not need to 'congratulate' myself, my ego does not require it.
We can have strong and different views but I do not know which of my comments you have found offensive/inflammatory, I certainly did not seek to be offensive and I do not believe I have been.
Blog threads on many forums can have a wide ranging discussion from the original topic which readers can choose to engage with or not. Raising issues which are not common currency helps to promote further discussion [and debate].
I have not denigrated Kayla or anyone with a diagnosis of BPD and I too have worked hard to further positive thinking, foster different understandings and alternative responses to mental distress.
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I've re-read my original posting and realised what caused you offence Gemma, but I think you've misread my analogy.
For some women, being diagnosed as BPD is like being called a paedophile when you’re not. It's such a smear that nothing they say to protest their dissent makes any difference. The counter-side of that is the diagnoser never need evidence anything. I think paedophile is a good analogy in that it's a figure that is culturally reviled and considered untreatable, akin to how people diagnosed as PD can be viewed.Mental health professionals cannot always grasp why [for some people] being defined as BPD is so very distressing and therefore suggesting how might they feel if they were defined as a paedophile when they were not helps to convey the depth of distress some service users feel. Renaming BPD as Complex PTSD, attachment disorder etc, doesn't change the perceptions of service providers as another poster commented. There are few words in the English language which can be used to explain how the fundamental meaning of a negative word cannot easily be shifted to a positive meaning but ‘paedophile’ is one. It could never have a positive meaning attached to it, shifting the language to a different description such as ‘child abuser’ would not make it less awful, it still means the same thing.I was using that as a way of explaining why I believe renaming BPD would not make much difference to how BPD is typically viewed [especially within secure services] I have argued against proposed DSM revisions of BPD which align BPD with Anti-social PD with emphasis on alleged lack of empathy. AS PD is associated [by clinicians] with offenders and there are men convicted of sexual offences diagnosed as such within the criminal justice service and secure psychiatric services. I’m painfully aware of the high prevalence of child sexual abuse experienced by women who end up diagnosed as BPD therefore I object to proposed DSM revisions which align victims & perpetrators -
Mindreader, I completely aree with your analogy of paedophile.
It feels exactly the same - it implies blame, it's permanent, and it's the first thing (usually the only thing) professionals have in mind when they deal with you.
Being given a diagnosis of BPD is like having someone tattoo your forehead with "I am a dog turd, please treat me like one." -
http://www.guardian.co.uk/society/2011/jun/01/mentally-ill-treated-like-criminals
He was given an indeterminate sentence of imprisonment for public protection (IPP), with a minimum requirement of two years in prison but no maximum limit. There are people convicted of serious violent offences who get less than this sentence. He was sentenced despite having done this on section because it becomes clear he was deemed to be PD rather than ‘ill’. So with PD you get the worst of all worlds. What greater invalidation is there than to tell someone that their personality is irreversibly ‘flawed’, and it's no good those experts trying to whitewash that with notions of 'recovery', how is a person supposed to recover from a ‘defective’ personality? I always remember one experts explanation of the ‘raspberry ripple ice cream’ description of PD i.e. you cannot remove the raspberry sauce from the ice cream. How is personality a health issue subject to being sectioned until the person commits an offence then all of a sudden they become ‘responsible’ for their actions? The Strangeway’s doc was so illuminating, the way they decided whether a person was PD or ill seemed to come down to how long a person was acting in a certain way, therefore saying that if the person was ‘ill’ they wouldn’t be able to ‘keep it up’ for so long. So length of time determined diagnosis! How are responsibility and awareness the exclusive preserve of a single diagnosis? People with illness diagnoses are also responsible and culpable for their actions.
I never envisaged wanting to get involved in the politics of PD but I’ve realised over time how this goes right to the very heart of many strands of argument about society and psychiatry in a way that’s even more pertinent than say Schizophrenia because it’s about how we define what’s mad/out of control and what’s apparently not and attaching different values and sanctions to both. Why should any offence be better or worse simply because of diagnosis?
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This is almost facsict. A young man sent to prison due to his behaviour in a psychiatric ward. There is no getting away from this personality disorder equals bad and dangerous person, not ill just bad. I want SOMEBODY to take responsibility for this. I was diagnosed Bipolar by three senior doctors before a bad spell in hospital had that changed to BDP. Many people mentally ill are so as a result of how other people and society have treated them so please expect some challenging behaviour in psychiatic wards. Instead people are demonised (BDP) and criminalised in a way no other section of society would tolerate.
Please do not underestimate the anger at all this. My diagnosis came about as a result of repeated trauma and a tulmultous childhood, this I have been told. So I get this label as a result of abuse from someone else who the world beleives is perfectly normal.
BDP offers no light at the end of a tunnel, suicides are high I beleive relating to the actual diagnosis. Again I would like someone to have the guts to take responsibility for this -
Your anger is justified Linda, and what it needs is people like you to start a group to ask the difficult questions, to challenge diagnosis and how people are treated, to write articles and if editors won't print it these sites will: http://www.causes.com/causes/615071-no-more-psychiatric-labels/about
http://www.mentalhealth.freeuk.com/article.htm
You are not alone. PD is the moral and political frontline of diagnosis and is more core to psychiatry's problems than what Schizophrenia has been assumed to be. PD is a deeply flawed idea - how can personality be a disease? And if it's written right through somebody like a name on a stick of rock how can it go into remission? It's treated as untreatable within secure services but more and more people are going to be defined as this in the community as services cannot cope with 'illness' service users. The biggest movements start from small strident acorns
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