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False Diagnosis and the Propagation of Stigma

A long time ago clinicians did not know what the condition now known as Borderline Personality Disorder (BPD) was. They were puzzled and frustrated by it. People presenting symptoms such as swiftly changing moods, suicidality, self-harm and intense emotional outbursts didn’t respond well to treatments for psychosis or neurosis and yet appeared to exhibit symptoms of both. These patients were designated the diagnosis Borderline Personality Disorder, the borderline representing the border between neurosis and psychosis. 

These patients posed a serious challenge to clinicians because they simply could not treat them. As such these patients came to be viewed in a very negative light by the clinicians themselves. It was believed that these patients represented a group of people who were pathologically manipulative, attempting to bend the will of their therapists by switching moods and “threatening” to kill themselves. Their self-harming behaviors were seen as pathological and melodramatic attempts to seek negative attention because their characters were so flawed that they could not gain positive attention.

It was not until the advent of Dialectical Behavioral Therapy that any treatment at all had any success with BPD patients. DBT in itself had been devised by Marsha Linehan, who understood the reality behind these stigmatizing representations of BPD by the medical profession because she herself suffered from BPD. She knew the intense pain that informed the behaviors that were so wrongly caricatured and misinterpreted.

Once this treatment was practiced and became successful the medical profession slowly and incrementally began to become aware of the shocking and awful treatment they had subjected people with BPD to. Because of their failings to understand and validate the experiences of these incredibly vulnerable individuals, they had in many cases treated them as lost causes and greeted their pain with scorn, ridicule and rejection instead of understanding and care.

And so today even within the mental health profession you will find therapists who refuse to work with people with BPD because they are not aware of the research which overthrows these stigmatizing views.  They are unwilling to believe that treatments work and are unwilling to retrain in order to effectively treat people with BPD, blaming the patients themselves, rather than the fundamental flaws in the techniques they used to treat people presenting with BPD symptoms. 

These therapists hold fast to the belief that the BPD population are pathologically abusive and incredibly difficult to treat. They are unaware how eminently treatable BPD is using the right techniques and interventions. Some will even unethically confer third party diagnoses of BPD when hearing of anecdotal accounts of abusive behavior from relatives or partners who seek their therapeutic services, even though as therapists they are not trained to identify mental health conditions with precision, let alone based on third party accounts. It’s shocking, it’s unpleasant but it is true and well documented.

A body committed to overthrowing these awful views is the National Educational Alliance for BPD, whose members are committed to providing insight into the true nature of BPD and how best to improve treatments for it. Many professionals, such as Dr. Blaise Aguirre in this lecture, will hold their hands up to acknowledge the poor management of the BPD population in the past and are committed to raising awareness to stem the flood tide of misconceptions surrounding the condition.

Unfortunately it is not just within the medical profession that these stigmatizing views need to be challenged. These false misconceptions, misinterpretations and prejudices are propagated by sites run by self proclaimed experts, who have no qualifications to identify or diagnose BPD. These people claim to be committed to healing the suffering of those who have experienced abuse at the hands of people with BPD who exhibit such symptoms as “pathological dishonesty”, “manipulation”, “self centredness”, “lack of empathy” and “abusive behavior”.

There are now communities of people who operate outside the realm of any clinical moderation or regulation who continue to rail against people with BPD, continue to misrepresent their real symptoms as callous and malicious attempts to oppress and harm others to relieve their own suffering. These communities are filled with people who have never consulted a clinician, whose accounts are entirely anecdotal and subjective and would not in anyway be admissible in the assessment of BPD.

BPD is assessed by analyzing the internal life of the patient by a trained clinician who is well versed in current research into the disorder. It is not identifiable by someone exhibiting a lack of empathy. It is not identifiable by someone being aggressive or abusive. It is not identifiable by someone being manipulative.  Interpreting external behaviors as being indicative of BPD is dangerous to those who are diagnosed with the condition and in treatment.  People who are in the anger stage of grief lash out at anyone with BPD if they believe that a person with BPD has caused them pain.  

Online forums where people with BPD got to seek strength and support while we go through therapy are attacked by hate campaigns from communities of people who believe that we are not unwell but simply pathologically abusive and deserve to be abused.  I have been personally told I deserve to be raped so that I can understand the torment that I cause to people that have cared for me, that my parents did love and care for me but I am so evil and twisted that I returned their love with hate. I have been even told I should go and kill myself because the world would be a better place without me.

It is very hard to find support on the internet when you have BPD without being a target for abuse. Indeed, a friend of mine reached out for support on the internet while he was waiting for DBT and took his own life because it really didn’t take too many attacks to convince him the world would be a better place without him.  He was looking for support on the internet to convince him he was wrong but instead he was goaded into the act by people who caused him to believe his self loathing was justified and he deserved to die.

This is why I am passionately campaigning to overthrow these hateful misconceptions surrounding a much maligned disorder.  It is no mystery why people with BPD are more likely to take their own lives than any other group within society.  Life for us is already quite unbearable but the abuse we receive for our condition makes it even more so.  I am committed to doing everything in my power to clean up the misconceptions surrounding BPD so no other person who suffers from it suffers as my friend did.

So now in the US, where there is a higher level of awareness surrounding the condition due to the hard work of NEABPD and PDAN, it feels that hatred and misunderstanding surrounding BPD has been increasing, as people who are simply abusive are being wrongly and unprofessionally diagnosed as having BPD by support communities for people who are ostensibly recovering from their relationships with people who they believe have BPD. These support forums are a free for all of abusive terminology and dehumanising representations of people suffering with a debilitating condition due to the lack of regulation and genuine attempts to heal that go on in their name.

Those who are experiencing abuse by a partner/family member/friend or colleague need to seek help for themselves first and foremost.  If they are dealing with someone who has no willingness to accept help or treatment, then finding a name to place on the cause of the abuse could deviate them from the important business of getting help.  Abuse is abuse, there is no excuse. So often we get queries on BPD support forums saying “I’ve tried techniques to help communication with my BPD partner, but he is continuing to lie, cheat on and manipulate me.” When I ask, “Is he in treatment?”, I get told no, but I know it is BPD because I’ve read about it.  I tell them what they should have been told in the first place “Get help for yourself! There is no virtue in diagnosing someone who is not willing to accept treatment.”

With grown children of abusive parents, of course, they are going to want to know why?  I wanted to know why my parents didn’t love me.  I got directed to a forum for children of narcissistic parents.  In my interactions with these people I became strongly aware that many of them displayed BPD traits, were in intense pain and I tried to encourage them to get help.  I became the focus of abuse for having BPD.  I was told that my parents weren’t narcissistic but that my BPD made me think they were because I’m so selfish, etc.  These people refused to accept that they themselves may be suffering from a completely treatable disorder and preferred to nurture their anger and direct it towards anyone with a PD diagnosis.

Young children who are experiencing abuse need to be protected.  They have no responsibility to understand or diagnose their parents.  All they need to do is understand that their parents behaviour is unacceptable and that they are not responsible for it.  I have a long term friend whose partner has recently been diagnosed with Bipolar Disorder.  He has abandoned his children more or less but Skypes them to tell them they need to research Bipolar so that they can understand why he can’t be with them.  They now miss their father terribly, feel responsible for his absence because of their failure to understand why his bipolar diagnosis prevents him from being near them.  It is truly heartbreaking and I can see that this pressure is traumatising for them.

Ultimately, while I appreciate the impulse to educate and advocate those who may be having a relationship with someone with a personality disorder, this needs to be done with extreme care to make sure that those who are experiencing abuse do not wrongly try to alter their behavior to prevent the abuse.  Abuse is abuse, there is no excuse.

And now for my personal concern as a sufferer of BPD.  People need to know that the only way a personality disorder can be successfully diagnosed is by a trained clinician who can professionally analyse the internal life of the patient in relation to their external behavior. External behaviour is no true indicator of the presence of a personality disorder.

Because of this enthusiasm to pathologise people who have hurt us so many people now are damaging the efforts made to raise awareness surrounding BPD with their anecdotal accounts of what they perceive to be BPD behavior. They are angry, rightly so often, they are grieving, and need to be assisted to recover from the grieving stages of the end of a relationship.

Falsely diagnosing those who have hurt them with a personality disorder causes ex-partners, children of, or even friends of abusive people, to remain attached to them by obsessing about that person’s perceived disorder.  I have gone no contact with my parents.  Besides from giving up drugs and alcohol it is the best decision I have ever made.  It is a painful one, for the first few years you are riddled with guilt.  Eventually this subsides as you finally come to see how toxic their influence in your life is.

I am pleased in a way that my diagnosis of BPD alienated me from the children of narcissistic parents community because it has enabled me to move on.  I will never know whether or not my parents were mentally ill because their internal life is a mystery to me and they are not willing to share it with me despite my attempts to try to open a dialogue with them about this.  I don’t hate them.  They are what they are, I accept that.  I do not engage with communities to agonise over why they were not able to protect me or nurture me.  I focus on my own recovery and now I am not angry with them anymore that recovery is going from strength to strength.

 

17 Comments
  1. It comes across to me that you have tried really hard to address stigma surrounding BPD and want to help others’ understand and also educate people. I wish you much success with this and hope you are successful in your quest. I try in my own personal life to break down stigma by opening discussions with health professionals by saying “I am not trying to manipulate anyone or hold you hostage to my feeling and thoughts. I try to tell people that my behaviour is my way of communicating how bad I feel as I am lost for the words to explain. There is a program called STEPPS which is gaining popularity – if only I could prove I can be consistantly well to attend every session which is difficult as I have physical health needs too. It is depressing and a slow progress but if I show professionals I am open to their thoughts and questions, they also gain from our appointments. I try to be approachable, calm and unjudging. That is all I ask in return. See me as a human in devastating distress. Look at the person… Not the diagnosis. Also, I wonder if BPD is a symptom of childhood trauma as this is my experience of talking to others with the diagnosis.

    • Hey Leila, childhood trauma is a frequent and significant factor in the development of BPD although the origins of the disorder are varied and complex. Some children who have been seriously abused never go on to develop the condition whereas others who have experienced what others may experience ordinary events such as divorce develop BPD because of their hypersensitivity. The jury is still out on pinpointing the exact causes. Parental Invalidation and genetic disposition are the working theories that most researchers accept. These stigma promoting organisations lean heavily towards trying to prove that BPD is purely organic in origin, but credible scientific research is showing that social, genetic and environmental factors interplay in the development of BPD. When you’ve finished your STEPPS course there is a great online DBT course if you’d like to get involved with that. STEPPS is a good starting point but you will likely find you need further treatment when that part of your therapy is completed x http://www.dbtpath.net/

  2. Excellent article! You’ve described so well why people should not be so quick to diagnose and then stigmatize people who may or may not have BPD.

    • Thanks for all your support sugarplum! Together we’ll crack it 🙂

  3. This is a wonderful, yet depressing article. Depressing because its so true. I’ve been denied treatment because of having BPD. I hate when I’m watching TV and I see an over-exaggerated display on some Law & Order rerun of an abusive person being diagnosed with BPD after a two minute interrogation.
    You can’t diagnose yourself and less so can you diagnose your significant other/friend/roommate/parent. I think this article is great and I hope more people not already involved in the BPD community will read it and learn more about what BPD is and what it feels like.

    • Hey Andi! I know, it is depressing. The reason this stuff has been going on for so long unchallenged is because we, the ones who are diagnosed with BPD, are the only ones who see this abuse. Even while I have been trying to get it together to write something about this and challenge those who propogate this stigma I have at times caused myself to become unwell by encountering it and trying to coherently and rationally pose an argument to address this. I have been told that I should leave this alone and that there are more important ways to challenge stigma than to raise awareness of this type of harassment but I think that it is precisely because of these types of organisations commitment to raising their own brand of stigmatised awareness that we are still fighting this nonsense today. The research is out there, the treatments are out there and there is no good reason for this stigma to persist. Our voices need to be heard and those organisations committed to raising awareness of BPD need to understand the serious challenge to their agenda that these dangerous stigma propoganidists pose to their agenda and our wellbeing. There is hope my friend, and it is just around the corner. If this stuff makes you unwell then it is wise to stay away from it but you are more than welcome to share this article with any organisation you feel can held fight the stigma x

  4. I agree completely with this article! Reading some of the things said about us with bpd are so painful that they often make me cry and even discourage me from continuing on in my journey to recovery. It needs to stop, hateful articles are everywhere and people don’t understand the truth about it and what it is really like! Some do but alot of it is just uneducated opinion. The stigma around bpd is massive. Its everywhere, its untrue and its hurtful. It needs to stop and i’m so glad that someone has decided to campaign against it. I wish i thought of it ages ago and i will definitely be playing my part to campaign against the stigma.

  5. I wrote this article and although i am committed to campaigning I am not well enough to lead a campaign as yet. I am contacting as many BPD focused organisations as I can find currently in the UK and the US to make them aware of these concerns and trying to write articles that highlight and articulate these concerns. From my communications with NEABPD, Emergence Plus, Mind and TARA 4 BPD it seems that there is a lack of awareness that stigma is being promoted by organisations outside their influence and undermining their efforts to educate and inform people about the real nature of the condition and the presentation of its symptoms. If you wish to share this article or add to these concerns and email organisations that are fighting stigma to make them aware of this that would be a great way to campaign to but these concerns on the agenda. BPD Pride!

  6. Hats off to you for writing this, Danielle! You wrote what is clearly in my mind, and I think a lot of other BPD sufferers as well. It takes so much strength and determination to face every day anew, but if we join together, we can become the community who understands each other and does not discriminate, to which we can help others. I recently have gone no-contact with my parents again. I did this previously in my life for years. I can admit I felt a lot healthier. I reunited once I had a child, but that was a mistake. Now, being back in DBT therapy and starting no-contact with poisonous influences and people in my life, looking at another day in the world becomes just that tiny bit easier. Thank you for sharing your story and experience in our world of BPD. <3 ~Anne. Fellow sufferer of BPD & creator of Facebook page: B.P.D.Support4U

    • BPD Pride, baby! I’ll see you on a march one day 😉

  7. Thank you Danielle. You are a hero to me. I can only hope that things change and your input is invaluable in this endeavour. Sadly, I cling to suicide as my last resort because I know that there are people in this world who will simply always believe that BPD is a ‘selfish’ disorder. If only people knew how much pain and suffering we deal with on an everyday basis. I salute you, my friend. I wish I had your strength; but after 40 years of misunderstanding (by family, medical ‘professionals’ and friends) I am worn down. I wish you all the best on your mission, and all the best personally… you deserve it. Love always. x

  8. Hi Danielle
    This article is written so well and covers excellent points regarding stigma, abuse and pseudo diagnosis by unqualified people.
    One point you and some respondents made was regarding no contact with parents. This is a painful choice I had to make for my own well being. I have never heard of anyone else taking this extreme measure – it gives me great comfort to know I am not the only one.
    I also want you to know that the terrible stigma exists here in Australia so please consider spreading your campaign to “down under”. My therapist is great and has also warned me of the stigma regarding disclosure even in the medical profession. His name is Dr Mark Sachman and he has done significant BPD research, teacing and study out of the University of Western Australia and specialises in treating BPD clients. I now realise how very lucky I am to have him as my therapist for many years.
    Finally I want to thank you and everyone who contributes to this site and the campaign against humanities worst trait – cruelty.
    Keep up the good fight.
    Much kindness
    Leese

    • Thank you sweet cheeks! I’ll get a message sent out to him and see if he can put me in touch with any orgnaisations over there who would be willing to help. Cheers for the heads up <3

  9. I want to thank you for this article and your desire to help and spread awareness of BPD. It was recently suggested to me that I seek professional counseling in regards to possible BPD. My background and a lot of my life experiences fall in line with symptoms/red flags for someone with BPD. I am going to a counselor that specializes in BPD. In the mean time I really wanted to do some research on what it was, because even in my Psychology classes that I took in college, it wasn’t really something that was mentioned. Your website has been very eye opening and has helped me to better understand this and to feel more confident about my future. Before learning about BPD, I felt so helpless in my own mind, and now with a better understanding of what it is, I feel like the future is going to be a lot brighter. As cheesy as that sounds. Before I just felt like I was going crazy, and now I feel like I can do my best to conquer this. <3

    • I’m glad you found the article encouraging. BPD is not a life sentence and there are lots of different treatment methodologies that benefit us now. It seems a new and more effective method is coming to light every year since the DBT revolution. I’m currently in Schema Focussed Therapy which I found very beneficial. I’ve also had a lot of help from EMDR treatment but I had to pay for that privately so I only had 10 sessions. I’ve never done DBT because I have difficulty in diary keeping and written exercies, too much like school! It works miracles for some people though. PDAN is an organisation that is primarily focussed on the needs of children who have a parent with emotional problems so just be aware that its objectives are not specifically to provide support for those with BPD. Take care and I wish you strength and hope in your recovery x

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