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What’s in a Name?

Recently, a lively debate arose in PDAN’s Facebook community about the names of personality disorders, especially Borderline Personality Disorder. We posted a controversial article and got a lot of passionate responses. All this feedback made us think and evolve. We decided to clarify PDAN’s position on this sensitive issue.

PDAN stands for raising awareness for all personality disorders, especially affect-based disorders: borderline and narcissist. PDAN’s focus is on preventing the development of personality disorders in children as they grow up. The books PDAN has published so far are for children ages 7 to 14.

PDAN primarily works on assisting families with prevention efforts. PDAN also wants to give a voice to people who suffer from personality disorders, for we acknowledge it is helpful to understand how people with personality disorders feel inside. Their situation is not easy, and many people with PDs are making commendable efforts to improve their emotion management. PDAN is pleased to help people with BPD or NPD or other PDs speak up in the context of awareness and prevention campaigns for families.

At stake is the question: How can a family member of someone who looks like they have borderline personality disorder – but we don’t know for sure, for there is no diagnosis by a therapist nor licensed psychologist, and there is little hope that this person will ever be diagnosed, since they explicitly reject the idea of going to see a therapist – how can this family member describe accurately and non-offensively the person they care about?

PDAN is proposing to adopt the following terminology:

People with Intense Emotions (PIE) = People whose behaviors exhibit traits of personality disorders that are affect-based, (such as emotional regulation disorder, borderline or narcissist personality disorder), and who may or may not have been diagnosed by a licensed therapist.

Please note this is a term about observable behavior, not a medical diagnostic. PDAN proposes to use this term to refer to people who may have BPD, but we don’t know for sure, for PDAN does not encourage family members to make a medical diagnosis on others. People with Intense Emotions is a term that also includes, in a respectful manner, most people who have been diagnosed with BPD.

People with Borderline PD or Borderline People = People who have been officially diagnosed with borderline personality disorder and have shared this diagnostic with their families or friends.

Emotional Dysregulation = a temporary episode of emotional intensity that is expressed in a poorly modulated fashion, and does not fall within the conventionally accepted range of emotive responses. Emotional dysregulation = labile moods = marked fluctuation of moods. Maybe some of the 9 criteria currently used to diagnose BPD can help decide what is a dysregulated expression of emotions.

Emotional Intensity Disorder or Emotional Regulation Disorder = a pattern of emotional dysregulation episodes, with the overall pattern lasting over 1 (or 2) years. In some countries outside the US, Emotional Intensity Disorder or Emotional Regulation Disorders are other names used to mean essentially Borderline Personality Disorder.

PDAN’s position is that NO unlicensed person should be making personality disorder diagnosis on their own, AND that an unlicensed person who is concerned about the behavior of another person should seek professional help to determine a diagnosis.

PDAN would like to see a common language adopted as soon as possible to enable conversations about personality disorders and behaviors with intense emotions. It is important to note here that there are at least 5 distinct audience groups here. They have very different viewpoints on this topic, and may want to use different terms:

  1. Family Members of people with behavior in question
  2. Children of people with behavior in question
  3. People with behavior in question, who have not been diagnosed officially with anything, or have been diagnosed but reject the diagnostic and are not in treatment.
  4. People with behavior in question, who have been diagnosed with a personality disorder and are in treatment.
  5. Psychologists, psychiatrists, licensed professionals such as social workers, mediators, guardians ad litem, etc.

PDAN primarily speaks with family members #1 and children #2. We also have a good number of followers who are in treatment #4. PDAN would like all 5 groups to find valuable information and solace in consulting our website and social media pages.

PDAN cares about being viewed as an organization that is careful with its words, and encourages everyone to be careful with their words. PDAN maintains a collaborative attitude in communicating appropriate sensitive messages to our audience. We are very interested in your feedback.

Also, our goal here is NOT to rename borderline personality disorder. We know what BPD is per DSM IV and 5. Our goal is to find a terminology that family members can use to describe people whom they don’t know exactly what they have, yet it *looks like* it might be something like an affect-based personality disorder.

To stimulate conversations, here is an article titled What’s in a name? from a blog Frog’s Tale written by Katie Solomon in Australia in Oct ’13. This article is one person’s perspective on this naming issue.

How about you? Do you like the term “Person with Intense Emotions”? Does it help you describe some of your loved ones or yourself? Which respectful terms do you use to described your loved ones or yourself?

(This blog post has changed from its original content, due to the controversial nature of some passages. Comments below from 1-2 November 2013 referred to parts of text that came from the Frog’s Tale article. These parts have now been removed from here, for they did not represent PDAN’s philosophy about names and usage.)

8 Comments
  1. When you actually suffer from Borderline Personality Disorder there is a great deal in the name. People with BPD are often misrepresented as being narcissistic, compulsvie liars, lacking in empathy and of being highly manipulative. This is not because we are, it is simply because we are lumped in with all the other personality disorders as being thought of as abusive. I’m not abusive, I’m not dishonest, I’m not incapable of empathy and I am a decent human being. It is incredibly painful when you suffer from an emotional dysregulation disorder that your behaviour is misninterpretted to fall into a category similar to that of your husband. It is incredibly disheartening to read this article after the one I had posted a week ago challenging these misconceptions. What a kick in the heart it has been to read this.

    • Hi Danielle
      I am sorry you feel that way. I understand that it is difficult and disheartening. I read your article and it is well thought out and interesting. It must be devastating to be diagnosed with a mental disorder and particular one that has such bad publicity. Gaining support from online communities is helpful to you and others with the disorder.

      However, the same goes for the people in my situation. I too need support and found it online. I learned many things which helped me deal with his ongoing behaviour towards me and my children. I too may have ended up taking my own life if I hadn’t found others who understood what I was dealing with gave me techniques to cope.

      You said
      ‘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’.

      I say that finding a name gave me and many others like me, the direction to seek the right type of help.
      For the partners, the particular name or category of personality disorder is not so important, the support, understanding and validation are what count.

      For yourself, with a diagnosis and the insight to understand your situation and the ramifications of having a personality disorder, the name is of course important. The sad thing is that many people with personality disorders do not have your insight, nor will they ever receive an official diagnosis, as they do not recognise that there is anything wrong.

      Additionally, many will not receive a diagnosis because it is only those of us that live with them and can see their behaviours over the long term and in different situations, that are able to recognise it as a personality disorder. I am not a clinician, and I cannot say for certain he has a PD or which category of PD he may fall into. It doesn’t matter. Just knowing he is displaying behaviours of a personality disorder is enough.

      Just as you don’t wish to be categorised, discriminated against or viewed the same as all other people with a personality disorder, neither do I wish to be associated with people on support groups who only abuse people with personality disorders. The majority of us don’t do that and are only there to seek help.

      Finally, as you quite rightly say, going no contact is the best way to move on and let go of an person in your life with a personality disorder. Unfortunately for many of us that isn’t an option. Children prevent that choice and leave us open to even more abuse through the children and family law courts.

      We should ALL be thankful that the internet has given us access to the help and support we need from whichever side of the fence we come. It also gives us the opportunity to educate the world about all types of personality disorders and the suffering they cause.
      FT

  2. Hi, Frogs Tale, until someone approves your comment I can’t answer on my blog so I’m just going to answer here. Thank you for taking the time to read my post and to answer this concern. I know it must be painful and certainly I found some comfort in analysing my parents through the lense of narcissism for a while so I can understand when children are involved that this become a relevant issue. The problem is this belief that you and others have that people with BPD do not seek treatment. We do and we have to fight damn hard to get it. I first went for help when I was 18 and I didn’t get a diagnosis and appropirate treatment until I was 37.

    BPD is, in fact a misnomer, and the more that is being understood about the condition the more researchers and clinicians are beginning to realise that qualities such as I described in the article do not belong to us. We have a great deal of empathy. Some argue that the problem with those diagnosed with BPD is that we have too much and simply can’t cop with it. We are much more likely to abuse ourselves than we are other people and we do not, in anyway, fit the stigmatised version of us that you are likely to read about on online forums and in self help books on the matter. I would give you a list of authors and sites and examples of this problem here but unfortunately that would be too contraversial for PDAN and the fact that they have printed your article after mine shows me that I’ve got a long way to go to get them to see this matter clearly.

    We are not all the same. People with BPD are desperate for treatment because living with the condition is so painful and it is a myth to say that someone actually suffering from the condition does not want help. If that is the case they will be suffering from a less painful disorder. In BPD the ego is totally smashed down and has no defences. Every day is a struggle and the idea that we get releif by abusing other people, being charming and manipulative is just another case of poor information that leads to the abuse of people suffering from a highly treatable disorder.

  3. It is often hard for us on this ‘side of the fence’ to have understanding and empathy for partners, ex-partners and family who display behaviours of a personality disorder (with or without an official diagnosis). It is just as hard for people with a diagnosis to see our side of the story, and of course even harder if one of their symptoms is lack of empathy.

    But we are all suffering and all share the same desire. We want to inform the world about personality disorders so that our suffering is understood. Wouldn’t it be great if we could all work together to reach the same goal.

  4. With regards to psychopathy and sociopathy there are no treatments and this is a good book to read in order to protect yourself from a manipulative personality without the need to embroil yourself in the world of lay diagnosis. http://www.amazon.com/The-Gaslight-Effect-Survive-Manipulation/dp/0767924452

    With regards to Narcissistic Personality Disorder then it is well known that manipulation and unwillingness to seek treatment are problems associated with this disorder. However there are those with NPD that have achieved recovery through treatment, but if they are of the malignant type then the above book again allows you to learn how to protect your own boundaries without seeking a name for the disorder which will cause you to, as you have stated above, lump us all together and hate people in intense emotional pain.

    I have no idea why avoidant personality disorder has been mentioned in your post because such people simply do not, cannot deal with personal interactions and so avoid them at all costs, They are highly unlikely to abuse you because this would interfere with their major defense mechanism of keeping the hell away from conflict and anyone that causes it.

    And now, with regards to BPD. BPD is highly treatable and because of the pain associated with the disorder people seek treatment. However, because people mistake BPD for NPD then the drive to make treatments available for BPD is being hampered by the much more powerful drive coming from those who believe they have been abused by people with BPD to stigmatise and discredit us. We have empathy, lots of it. Like I said ask Blaise Aguirre, he’ll tell you. He fights hard to get therapists to train in techniques that enable people to fully recover from BPD because they too are mired in this nonsense simply because their interventions don’t work and they are not willing to learn new ones.

    So as a person, like so many people who have BPD, who has experienced abuse yourself you have now gone out, read a few books, found comfort in support groups who despise anyone with a diagnosis of personality disorder and feel vindicated to lump us all in together with the abusive and the manipulative and those who are resistant for treatment. I have shown you empathy. Yes your article upset me but I tried to open a diaglogue with you and the beginning of that dialogue resulted in you telling me that I have no understanding of how painful things are for you. Of course I do! I have been abused. I have empathy.

    Sadly those who don’t experience the pain of BPD cannot empathise with us. At best they can sympathise. Unless someone scars your brain making it impossible for you to reign in painful emotions you will not understand the impetus that drives us to harm or indeed kill ourselves. But we are not always disregulated and when we are well we do understand, we can empathise and we do listen. But when your concerns directly effect our ability to campaign for awareness raising and improve access to treatment we have every right to question you.

    When I was abused I didn’t go online to find out the answers to my concerns I got therapy and I bought the above book that I recommended to you. That has enabled me to find a way to letting go of that hatred and find ways of coping. While you have found kinship for your experiences of abuse they have led you to a place where you feel it is acceptable to write articles such as the one above comparing highly treatable, vulnerable and suicidal people with psychopaths. Now where is the empathy in that?

  5. Hello Danielle

    Could you please direct me to your blog? I have BPD, A narcissistic mother and at least one relationship behind me with another Narcissist. I’m trying to understand myself and this dynamic more and maybe your blog will help?

    Paul

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