Personality disorder: discrimination by diagnosis
"What are you doing now?"
"I’m in this clinic here."
"Why, are you a Doctor?"
"No, I’m a psychiatric patient."
"Shit, you’re not going to knife me are you?"
This is how a short conversation started between 2 former Cambridge University students on Borough High Street, London in the early summer of 1994. We had been at the same college. He had studied law and I had studied history. We had graduated together 3 years before and not met since. He had gone on to be a lawyer and I had gone on to be incarcerated in a Victoria Asylum after a catastrophic breakdown.
By the time we met again I was 3 years into treatment for a mental illness that was proving intractable. I use the term treatment loosely as none of the many anti depressants I had taken, nor the 18 months of psychotherapy, had made any difference. That summer I was once again in hospital, which was clearly the last chance saloon.
the real discrimination came from the professionals.
I expected discrimination from the public: why should they know about mental illness? For the first 2 years I had told people I had ME (Myalgic Encephalopathy), which sounded better than depression. But the real discrimination came from the professionals.
I was diagnosed with a personality disorder. No one wanted to know me after that. In my experience, few professionals then or now regard personality disorder as a mental illness. They seem to see it as more of a problem than a biological disorder such as depression or schizophrenia.
the way in which one was treated was entirely down to diagnosis
I learned very early in my psychiatric career that the way in which one was treated was entirely down to diagnosis. People were taken far more seriously if they had a label of schizophrenia or manic depression (as we called it then). Professionals took little interest in those with depression, anxiety or personality disorder.
Almost exactly 7 years after that fateful conversation on Borough High Street I was still battling with wild mood problems, voices and an overwhelming desire to kill myself. Yet then my life changed. I finally met a psychiatrist who listened to me. She dismissed any notion of personality disorder and suggested I go on risperidone to stabilise my mood and stop my psychosis. A very strange thing happened then, it worked.
I also became a mental health practitioner
The following year I started to write the book that I swore I would always write. I was driven by vengeance on those who had wronged me, judged me, and lied to me. I also became a mental health practitioner. What I had said all along about discrimination by diagnosis sadly was proved right.
Fast forward my life to 2012, I am about to enter my 6th year as a Mental Wellbeing Advisor at the University of Hertfordshire. My book A Pillar of Impotence has been out in paperback since January 2011 and is on the essential reading list for mental health nursing students for at least 2 universities. I’m no longer motivated by vengeance. What it did do for me was exorcise many of my demons - the story no longer flies round my mind perpetually. In that respect it was hugely cathartic. The sequel, Charon’s Ferry, about my life as a professional is written and will soon be submitted for publication.
professionals treat people with personality disorders differently
I hope the wider world has moved on but I somewhat doubt it. There are exceptions of course such as the Haven Project in Colchester, Essex. It does still seem to me that professionals treat people with personality disorders differently. It is time to end discrimination by diagnosis.
And what of that conversation of Borough High Street? It had ended with him asking if I was about to commit an armed robbery on a newsagent shop. What was I doing really? Waiting to use a phone box. If we struggle to educate the professionals what hope do we have with ending discrimination by the public?
Find out more information about personality disorders on Rethink Mental Illness' website and Mind's website
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Comments
The Haven Project
Dear Mark and other Bloggers
I have the privilege to be chairperson of the Haven community, and was very touched to read the comments made above about the work that takes place down here in Colchester. I could write pages about the changes I've made since being a client here, I could write even more pages about watching my fellow clients blossoming, stabilising and living a life worth living. But I won't, I know we are lucky, I know that without being one of the DoH pilot projects we would not have been. If you would like any further information please visit our web-site, details of our Open Days can be found on there to.
All the best
Pricey
"Cure" and the Haven
Hi,
My apologies for not replying sooner to the comments from Ben and Pricey. I'm also grateful to all who posted responses to my blog.
Ben, I do not regard myself as "cured" more in recovery. The significance in my life of risperidone is that at the time (2001) it appeared proof positive that I do not and never have had a personality disorder. I have a mood disorder that is now regulated by medication. Interestingly enough it would now appear that those with power have moved the diagnosistic goalposts on PD and now believe that PDs can be voice hearers- to me that is a lot of old shit. Good luck with your MH nursing training-I'm off to teach our 3rd years here at Herts on Friday.
Pricey, I have been aware of the Haven for some time and have always admired your work. I have met Heather several times and one of my nursing students I support spent some days there as part her placement last year and considers it life changing experience.
Mark
Goal posts/Diagnosis
Hello Mark i just wanted to congratulate you on the book, i can remember having indepth chats with you years ago. If you remember the OD course at SKC. I certainly agree with the attitude in respect of dianosis and the various sometimes striking obviousness in treatment inlight of different hypothesis that sometimes seem to be just pulled out of the air from one practitioner to another. Unfortunately like many things the help and support is only as good as the person giving it and finding a good dr or psychiatrist as you know can be as good as a shot in the dark. Can you remember the pixie. Well i'm glad you're in recovery and wish you well for the future.
BPD and the way out
Hi there Mark, again thanks again for sharing,
I'm intrigued as to your claim as to your 'cure' or 'removal' from BPD labelling, just after a magic pill (in your case Risperidone)...I'm not having a go but I am hoping that there is light at the end of the tunnel.
How did you manage to become 'cured'?
I agree with all the below posters about the prejudices against PD's but luckily I have found a decent Psych now and life is looking up, but I'm going through a rough patch at moment.
Like you I'm also going to work in MH and have changed career and am currently studying a degree in MH nursing.
Keep up the good work and I'd love to work with you.
Thanks once again for your bringing out your book, I'll have a look out for it!
Cheers
Ben
Hi Mark, what you've written
Hi Mark,
what you've written here really rings true for me. I started my psychiatric 'career' at age 16 and bounced around the mental health system for years accumulating all sorts of diagnoses (including BPD). I think because I was so young I naively believed that the psychs were right with everything they said about me, and it's only now that i'm out the system that I realise what a negative impact they and their stigma had on me. Even now I find it hard to trust my own view of myself and the world around me because of this.
Having seen this post i'm now most of the way through reading your book and it's really struck a chord - i've read a lot of books about mental illness in the past but none describe quite what it's like in the same way yours does. Not many stories of mental health explores things that are attached to a mental health diagnosis - the stigma, the navigation of the NHS, and the DSS - many of which often feel as bad as the illness itself, and definitely inhibit recovery!
So, thankyou.
Response Part 4
Thanks Josie, I'm very glad you are finding the book interesting. Do feel free to write a review on purchasing website-you don't have to of course. Very pleased you have managed like me to have got away from the System.
Mark
Response Part 3
As for services they are patchy. Here in Hertfordshire we do have an excellent PD service but they only have 65 places for the whole of the county.
My advice really to people is keep trying. Stigma will always be there in some but I have real concenrs about that within professionals. I am lucky enough in my job at UH to teach mental health nurses, social workers, CBT therapists and psychiatrists. I have influence now because of my job and my story is widely respected. But I doubt I could have got this far and had this influence had I stayed in Kent where I'm originally from. I worked for the CMHT that treated me and there were always doubters. Here it is different.
Thanks for all the kind messages. Thr piece that appeared on here was somewhat less hard hitting than the one I originally wrote. There was much editing. But it seems that the response both on here and on Facebook made it worth it.
Take care.
Mark
PS I have just signed a contract to publish Charon's Ferry.
Response Part 2
Whilst there has been an increasing trend in recent years to used atypical antipsychotics to stabilise mood-quetiapine is very common now-risperidone as not well known for that.
I'm glad to get a response about the Haven. I know their manager and have been really impressed with their work although I know about the funding issues. One of my students I support here at UH recently did a placement there and was stunned by the amazing experience she had. She has only recently got rid of the label of PD.
Part 3 to follow
An Amazing Response to my Blog
Hi everyone who commented on my recent blog for TTC on Disrimination by Diagnosis. Sorry it has taken a while to get back to you all-I was on holiday when the piece came out and only had very limited internet access.
Anyway, how do I respond to such an amazing array of comments? Well I can't respond to everything that was asked-my memory for detail is not so good. But I was struck by a couple of things.
To the reader who asked about risperidone-to me it was like finding the Holy Grail. My life change irrevocably the moment I started taking it. My consultant in London in 1994 once said to me "you will never find a medication that works for you". He was proved wrong by events 7 years later. When I started taking it in 2001 that appeared to blow away the myth that I had a PD. Incidentally the label they gave me was that of Narcissistic PD which is arguably the worst of the lot! At that time antipsychotics were not seen as a treatment for PD. Now of course they have moved the goal posts. Once I started taking risperidone my voices stopped, my mood stabilised and if anything rose, and suicide which had been with me every waking moment for 10 years became absurd.
Being diagnosed with a Personality Disorder
Many thanks for sharing - I've always thought that some mental health disorders are more discriminated against than others and your example adds to that belief. It is brilliant that you persevered, have been open and are now helping others. I have a Bi-polar 1 diagnosis (took over 20 years ot get this) which Stephen Fry's input has become sort of OK. Whatever our diagnosis I believe we all need to be more open with others in all spheres of our lives - it is the only way to margianalise and finally end the discrimination and stigma that 1 in 4 of us will suffer at some time in our lives.
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Where is the science?
The PD axis is entirely incorrect in my experience. I got a PD diagnosis and subsequent rude treatment from staff after a visit. I was stuck on the floor due to chronic stomach pains and has just been released from hospital. They treated me like badly and didn't even inquire as to why I was on the floor, they just assumed I was 'acting'. They hadn't, clearly, checked my records before arriving. I saw one of the team shortly afterwards in a petrol station que, she said to her son "That's him, he was lying on the floor like their were pools of blood around him," That's a mental health nurse teaching stigma to her own son!
A Doctor will look and guess, if you are higher functioning or threaten their authority in any natural way you'll get PD.
PD also allows the psychiatric disciplines to avert responsibility for lackluster treatment and it can easily be used to explain away frustrations with the service.
Where is the science? I recently watched a TED talks about PD where a neurologist couldn't find a separation in the brain scans of people with depression and PD. So it strikes me that it is used to cherry pick the subservient into the services and leave the 'questioners' on their own.
Hi Mark, Thank you for
Hi Mark,
Thank you for sharing your story, I am so, so glad that your life turned around and that you're now helping others.
I was diagnosed with a PD and am yet to struggle with the stigma as I haven't disclosed it yet as I'm too scared after reading many, many stories of people with PD's battling with stigma from professionals.
I want to be open but I know that we don't yet live in a world where people are truely open minded and educated about the lesser known mental illness' such as PD's. You're totally right in the fact that people are much less judgemental around schizophrenia and bipolar, as they have had more coverage in the media, I'm waiting for the day when PD's are seen on the same level footing as schizophrenia and depression.
You're an inspiration Mark, Thank you and Good Luck with everything.
great article
Fantastic - personality disorders deserve so much more publicity and understanding. I am a "trouble maker" still, at almost 50, and proud of it. I mentioned personality disorder on a website I am a member of called "mentalympians" created by Keith Mahar in Australia. Next day this site popped up. This is great - I can't do it on my own.
diagnoses & discrimination
Psychiatric diagnosis can be difficult, disorders present in various ways. Borderline personality disorders maybe present in the greatest number of ways and I am sure are easily confused with some psychiatric illnesses. The problem starts when people jump to conclusions without checking facts first as the person in Borough High St. did. It is worth remembering that having a diagnosis of BPD does not automatically mean that you are a nasty or dangerous person, nor does ANY psychiatric diagnosis.
Discrimination by diagnosis
I returned from a holiday to find the usual brown envelope staring me in the face.
Yes, it's the return of the DWP 'we're right, you're not' letter. I'm glad Mark was vindicated - I have a way to go.
Haven
After years of misunderstanding my Husband got a referal to The Haven, what a change to his life and mine.
They understand the problems, they bend over backwards to help no matter what the situation is. I could go on and on about them.
Interesting is that they are not part of the NHS, they run on funding and donations. It is also interesting that although at times they are running on a shoestring (my word not theirs) they provide such a first class service.
Stigma, Mental health professionals
In The Netherlands a group of patients and family members teach professionals by telling their own stories supported by research. An important part of our teaching is about stigma. Professionals are often unaware of their own behaviours and thinking. We hope we can help to stimulate a change.
I look forward to reading your book.
Thank you.
Doreen
Risperidone
You say you were given Risperidone.
Isn't that rather a controversial drug.
I know someone who has a relative who has been diagnosed with borderline personality disorder.
The person, a female) (who is 27 now) has had 3 other diagnoses.
Due to theperson's treatment by one particular Psychiatrist she refuses to take any medication.
Just wondered if you could throw any light on how Risperidone helped you. Her mother just doesn't know what to do to help her daughter.I
Look forwardto receving your feedback.
Glad to hear that you moved on to a happy life.
Personality disorders
I too have had a diagnoses of personality disorder after my limited treatment for depression did not work, I was then diagnosed with Borderline personality disorder, told I was incurable and discharged. BPD is an vague umbrella term used when people do not fit into a text book version of mental illness.
The Incurable BPD
I honestly believe the worst thing that happened to me was getting a diagnosis of BPD over a decade ago. Knowing others with numerous mental health conditions and the help/treatments they have received, I honestly feel like an untouchable waste of space - like people dont know what to do with me so just hope I will go away and stop bothering them. From what ive seen dealing with someone with BPD is a psychotherapist/psychologists nightmare - way too much hard work with very little chance of improvement. Ive been on numerous medications (citalopram, mirtazapine, fluoxetine, quetiapine to name a few) with no positive outcomes and many negative ones, and ive been trying to get therapy, but keep getting brushed off as the only one that they would reccomend is DBT which no one does in my area (Rhondda Cynon Taff in South Wales). So, im left with no help, unable to leave the house or look after myself properly, and with no end in sight - just sitting around waiting for it to be over which it doesnt seem is gonna happen until im just not alive anymore. Its not just the horrible stigma and shame that leads to so many taking their own lives because of mental illness, its a lack of services available, more depressingly so even if you have spent years asking for it.
Thanks!
I'm in the Colchester area and have only just found out about Haven, been through the gamut of diagnoses and currently it's dis-social borderline, to me that feels like, you're just a w**ker, stop wasting our time, wild mood swings, voices and suicide attempts lead me to being put on carbomazapine to stop the anger, too f**king right it did along with practically every other sense of self and well being! I've got a diagnosis on paper but how would you go about getting treatment? I'm begging here coz I can't stand being me.
Hi Robin, Mind and Rethink
Hi Robin, Mind and Rethink Mental Illness both run information services that may be able to help with practical advice as well as information about support in your local area - you can find contact details on their website:
http://www.mind.org.uk/help/advice_lines
http://www.rethink.org/how_we_can_help/our_advice_information/index.html
This is incredibly inspiring.
This is incredibly inspiring. Personality Disorders remain a "dustbin diagnosis" in my personal experience and the 'labe'l in this respect does matter a great deal in terms of treatment pathways and support available. I fear the lack of treatment and support will not change in time for me (I still don't even have a firm diagnosis of a PD, people seem to veer between depression/anxiety, abrasive/volatile, bipolar scale depending on how I am and the mood that's affecting me on the day they see me, which in itself says a lot...), but your story is nevertheless inspiring and may give others hope.
Thank you!!
It is about time discrimination WITHIN the system itself was spoken about. Your experience sounds so similar to mine, having also been diagnosed with a PD I noticed I was being treated differently than other patients in hospital and was often dismissed by GPs and other health-care professionals. My experiences with A and E were the worst. More often than not I was treated like scum and then normally packed off home after a suicide attempt. It got to the point were I would just tell healthcare staff, paramedics and police that I had BiPolar (before they saw my medical history of course) because I was treated like a human when I said that.
For me, my PD (or whatever it is, after all, PD is only a label) culminates in an emotional instability so severe that it is hard to live a normal life without working really really hard to recognise what is going on with my emotions and try to remember that the intensity I feel is often a result of the PD and not a measured response in reality. It is exhausting to live like this so to then feel persecuted within the system itself is just so frustrating. I do hope things are beginning to change or will begin to change soon and thank you for highlighting this subject because it may just be a step closer to increasing understanding within the system itself. All the best to you and great to hear you are doing so well :)
DeJa Vue
I have been told once I was a danger to myself and the people around me....this was by one of the first psyches I ever saw. That was helpful!
Personality Disorder - Experiences
Hi Mark, Firstly, thank you for sharing with us.
I know that the time in which you are referring was some years ago and I would hope that in most areas of the UK, many more 'professionals' are not only more aware of Personality Disorder that there is a recognised 'therapy' which helps a big proportion of PD sufferes.
I was diagnosed with AVPD & BPD in 2008 and for ME, having that diognosis gave me HOPE at no time have I felt it was just a label. I know where I live we are very lucky to have an amazing mental health team and Complex Needs team and other than 1 gp who thought it was ok to let me drive myself 20 miles to hospital after taking an overdose which included sleeping tablets I have at no point felt stigmatised because of my diognosis.
I am very proud to have been fortunate to partake in intensive theraputic programme and although I am still in what they class as 'recovery' I know with total conviction that I will never be in the place I was at the point of diognosis and am working closely with agencies in order to share my experiences to help both professionals and service users alike.
This post is so true.
This post is so true. Sometimes for a patient a diagnosis can be comforting, it lets you know that how your feeling can be treated and is very valid, rather than "just a phase" or something to "snap out of". But to a lot of medical professionals it is used to prioritize and to some level to discriminate against people with what's seen as "less severe." Another mental illness that's extremely discriminatory when it comes to diagnosis and professional is eating disoders; if you have an anorexia or bulimia diagnosis, you're considered more seriously than someone with EDNOS or even compulsive eating disorder. It's discrimination like this that LEADS to more serious problems with progressive mental illnesses like depression/ anxiety/ eating disorders, because they go untreated due to discrimination in one form or another, until they end up "serious enough" to be important to a professional. It can be extremely hurtful for a patient having to fight to be taken seriously or to feel like an inconvenience to the people who are meant to be helping them! This is possibly one of the worst forms of mental health discrimination, in my opinion.
discrimenation
I suffer from depression and am about to be brought to boot about my capability to do do my job by mindless witch hunting people who just need to find a victim to exorcise their power over...I am dreading going back to work after two weeks annual leave as this has hung over me like a very black cloud and spoilt what should have been a time for me to relax.. I have however got a very good union rep who I have every faith in that will see my demons off and let me get on with my job which I may add I am very good at and more than capable of....yeh so I dont have have a degree doesnt make me thick as a plank, I have more people skills and personality than they will ever have. Discrimination has to STOP !!!
Thank-you. I can now finally
Thank-you. I can now finally believe what I have suspected all along.
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