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  1. #1

    Borderline Personality Disorder frequently misdiagnosed

    Personality disorder frequently misdiagnosed
    Avis Favaro, CTV News
    Monday, September 6, 2004

    An Ontario woman's struggle to cope with a little talked-about mental disorder hopes the energy she's devoted to her health will help others afflicted by the silent curse.

    Debra Coates was a successful businesswoman and mother who got sick in the prime of her life, some eight years ago. "It had been a very stressful year, as you can well imagine, and one day it all caught up to me. I found myself being not being able to cope."

    The only escape Coates, 48, could think of that day was suicide. "It had never entered my mind ever before in my life," she told CTV News, recalling that first attempt to take her own life.

    Over the next three or four years, there were at least eight more suicide attempts. But instead of getting help, Coates' frequent trips to the hospital emergency room alienated her from the health care professionals. "Once you have gone through that so many times -- going to emergency and saying 'I need help' you are not too well received... you become a thorn in their side."

    All the while, Coates was being misdiagnosed. Then, after five years, she was diagnosed with borderline personality disorder.

    BPD, as it's sometimes called, is more than a set of personality traits. It's an enduring pattern of behaviours that manifest in unstable moods -- from anger, shame, depression. And, even though it's little-known, it is actually more prevalent than its higher profile counterparts including schizophrenia and bipolar disorder. According to a doctor who specializes in the treatment of BPD at the Centre for Mental Health and Addiction in Toronto, as many as one or two in every hundred adults are affected. "I don't think it would be too much of an exaggeration to call it a major public health problem," Dr. Robert Cardish told CTV News. Not least, he says, because its effects are out of proportion to the number of sufferers. "They are over-represented in hospital emergency departments, inpatient units, outpatient departments," he says, noting that they are more frequently admitted to hospital, and are prescribed more medication, than those with other mental health disorders.

    Beside those practical concerns, Cardish says BPD patients must also struggling with some powerful stereotypes. "Think of the movie Fatal Attraction where the female protagonist is portrayed as a very unstable, dangerous stalker who terrorizes this man and his family," Cardish says. "(But) most people with BPD are not trying to kill their ex, most are struggling real hard to get along in the world and with a bit of luck and a little treatment they can do very well."

    Confirming Coates' experience seeking treatment for her multiple suicide attempts, Cardish says it's not unusual for BPD traits -- from constant attention-seeking to being self-indulgent, demanding, excitable, and vain -- to make doctors reluctant to offer treatment. "They are thought of by medical health professionals as being difficult -- too difficult. They are thought of as being ... people that you can't really help anyway."

    Coates, however, persevered. Two years after her diagnosis, she had made her way from the bottom to the top of a waiting list for a course of therapy called dialectical behavior treatment. She says the therapy turned her life around, and inspired her to try and make a difference for others suffering the same disorder.

    "People are aware of schizophrenia, people are aware of depression, but people don't know about borderline personality disorder. I didn't know about it until I got it."

    Convinced there are countless Canadians who aren't being properly treated for the disorder, Coates dedicated herself to establishing the peer support group Wisemind Inc. And now, in her biggest project to date, she's now organizing the first Canadian conference on borderline personality disorder in early October. Coates' group, Wisemind, has teamed up with the New York-based National Education Alliance for Borderline Personality Disorder to organize the one-day conference in Hamilton, Ontario.

    Borderline personality disorder is not easy for professionals to diagnose, and self-diagnosis is not recommended. According the psychiatric guidelines of DSM IV, symptoms can include:

    • A pervasive pattern of affective instability, severe difficulties in interpersonal relationships, problems with behavioral or impulse control (including suicidal behaviors), and disrupted cognitive processes.
    • Frantic efforts to avoid real or imagined abandonment.
    • Pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
    • Identity disturbance: markedly and persistently unstable self-image or sense of self
    • Impulsivity in at least two areas that are potentially self-damaging (e.g. spending, sex, substance abuse, reckless driving, binge eating)
    • Recurrent suicidal behavior, gestures or threats, or self-mutilating behavior.
    • Affective instability due to a marked reactivity of mood.
    • Chronic feelings of emptiness.
    • Inappropriate, intense anger or difficulty controlling anger.
    • Transient, stress, related paranoid ideation or severe dissociative symptoms.

    Source: Diagnostic and Statistical Manual of Mental Disorders - IV

  2. #2

    Re: Borderline Personality Disorder frequently misdiagnosed


  3. #3

    Re: Borderline Personality Disorder frequently misdiagnosed

    It has always struck me that people living with BPD must bring the most courage to bear than anyone else I can think of. I'm not BPD, but I once made a friend of someone who was and she was an incredible woman. I will never forget her. The effort she put into surviving from one day to the next was *huge", the conflicts which prevented her from living - especially with other people - seemed never-ending, and she never gave up.

    I always think of her when I think of what strength of courage it takes for someone with mental illness to live life to the fullest possible.

    Thinking of her always rallies me to greater dignity in my own life and gratitude for what I have.

    ...

    Meant to add that my friend also found that DBT was most helpful to her.
    Last edited by amastie; January 9th, 2010 at 05:29 PM. Reason: Freudian slip "am BPD" to "not BPD"!

  4. Re: Borderline Personality Disorder frequently misdiagnosed

    Quote Originally Posted by amastie View Post
    It has always struck me that people living with BPD must bring the most courage to bear than anyone else I can think of.
    I couldn't agree with you more Amastie, especially since a lot of the time some of the people they go to for help, treat them horribly. It takes a lot of courage to have to face that as well, and keep fighting.

  5. #5

    Re: Borderline Personality Disorder frequently misdiagnosed

    Hi David,

    I just had to register so I could reply to the article about BPD and it being frequently misdiagnsosed.

    I was misdiagnosed with it, but in my case, the label itself was the problem. At the age of 12 I was medicated, and then I was 'cocktailed.' You could fill two hands with a daily dose of pills.

    For years my thinking was like being in a room where someone told a joke and everyone got it but me. I was hugely frustrated by being so 'slow on the uptake' when people talked to me, gave me instructions, or whatever.

    I did the gambit of psych hospitals and wards. I was in a ward in Peterborough, the Psych Hospital in Kingston, the Psych Hospital in St. Thomas, and then I developed chronic pain and a movement disorder. I also developed severe sleep apnea.

    These two diagnoses eventually led to a stopping of the meds and, much to my surprise, a complete loss of mental health illness and symptoms. In 2004 I took my last psych pill, my brain woke up, and I was able to kiss the 'system' goodbye.

    I now have a permanent disabiltiy, for which I have to use a wheelchair (a condition caused by too many psychotropic drugs) but I am alive, well, and very motivated to share my story and move on.

    I'll stop for now, but suffice it to say, I experienced years of abuse in the 'sytem;' the liberal use of seclusion, restraints, and the repeated message from the doctors and staff on the wards that I had a mental illness and would never amount to anything. The message was so negative. All I needed was for the meds to be stopped and to find a way to integrate into my community.

    I am proud to say I did that - and with not one speck of help from the professionals.

  6. Re: Borderline Personality Disorder frequently misdiagnosed

    Did they diagnose you at 12 with BPD? That in itself is absurd! I am sorry you went through all of that.
    It's good to hear that you have found your way back into the community on your own, I know how hard that is. I think sharing your story will be great to maybe help others, and moving on with your pride, knowing that you helped yourself, is a positive way to go about things from now on.

  7. #7

    Re: Borderline Personality Disorder frequently misdiagnosed

    Quote Originally Posted by STP View Post
    Did they diagnose you at 12 with BPD? That in itself is absurd!
    It would be. The diagnosis of a personality disorder (of any kind) cannot be given to anyone under the age of 18.

  8. #8

    Re: Borderline Personality Disorder frequently misdiagnosed

    David and STP, are you serious? By the time I hit the Psychiatric Hospital at the age of 23 (1983), I had been given 3 labels; BPD, depression, and schizoid personality disorder. I was first medicated in 1972, at the age of 12, with Sinequan; an antidepressant. I was also given something else that made me really sleepy. I'm not sure what it was. By the age of 23, I had been on, or was still on, a mix of anti-depressants, major tranquilizers, minor tranquilizers, and pills to treat the side-effects from the other cocktail of meds I was on:

    Chlorpromazine (short-lived because of an allergy)
    Haldol
    Mellaril
    Stelazine
    Pimozide
    Modicate (injectable)
    IMAP (injectable)
    Sinequan
    Amitriptyline
    Clomipramine
    Imipramine
    Valium
    Chlorohydrate
    Dalmane
    Halcion
    Cogentin
    Prostigmine

    The first time I finally managed to get off the heavy prescription medication was in 2004. I had developed severe sleep apnea and the sleep specialist couldn't treat it because I was on too much sedation. Somehow, through the fog, I heard the sleep specialist suggest surgery to cut a hole in my throat, and I freaked. I managed to get my Family Doctor to take over the prescribing of medication so she could wean me off it. The fear, and the wonderful family doctor, helped me to get away from the psychiatrists and off the medication for the first time in my life.

    When I got off it, I was shocked to discover that all symptoms of the mental illness vanished. I have never looked back.

    If you were to look at the psychological testing that was done while I was on medication, and then look at them after I got off, you would not believe you were looking at the results for the same person. Without medication I tested as having an above-average IQ, and an ESTJ personality. On the medication, I was tested as having a mild developmental delay, plus the personality and bipolar disorders.

    The medications I was prescribed at the psych hospitals between 1983 and 2004 include:

    Nozanin
    Trazadone
    Sinequan
    Effexor
    Manerix
    Paxil
    Prozac
    Lithium
    Valproate
    Tryptophan
    Oxazapam
    Lorazapam


    In the psych hospital's, I got to know seclusion (the bubble room), what it feels like to be locked in restraints (Posey's), tied to a mattress (tied in a way so as to stretch me - yank my shoulders up to my ears, and my feet in the opposite direction), how to eat without hands (because of the Posey's - dog style works well) - what it feels like to be entertainment for the male staff who liked to egg me on so I would smack the wall beside their head and they could call a code and throw me in seclusion. I was exactly like Ashley Smith - the one who died in a Kitchener prison - I just was lucky enough to survive. I know what it feels like to become a punching bag for the male staff, to be disbelieved about the abuse because they would say I was 'delusional', what shock treatments are like, what the forensic ward is like, etc. I was in a program that is apparently identical to the one they used to use (and maybe still do), in Penetanguishine. The difference is, I was the only one who had never commit a crime. I was sent there because I was suicidal. I now use a wheelchair because of the medication damage and I still face huge discriminatory stigma by the medical profession, but I just got a new doctor and she is fantastic. She is now helping me to debunk 7 mental illnesses and a label of dementia that was arbitrarily added to my file.

    Anyway, enough of the negative. By all means, ask questions, but the good news is, I have learned to put all that behind me. I can't focus on getting even because the medical profession are basically untouchable. That being said, I now have 2 investigations underway to look at the systemic part of the problem; the focus on medication instead of treatment, the tendency to 'pass the diagnosis' instead of looking at someone with a fresh pair of eyes, etc.

    I am sharing this story so that, if others experience it, they will not be afraid to speak up. But to also encourage others that we CAN overcome some pretty horrific backgrounds and still move on in a positive fashion.

    All I can say is thank God I have learned to turn my life into a positive - be vocal - and try to stop the abuse for others. I just hope this nightmare has never happened to others.

  9. Re: Borderline Personality Disorder frequently misdiagnosed

    Am I serious? I wasn't doubting you, I was saying it's not normal procedure to diagnose anyone with a personality disorder before 18. Meaning it was wrong.
    I'm sorry you have gone through all of this. I have experienced seclusion, done the drugs and restraints myself. Obviously not even close to the degree you have.
    Have you really put this all behind you though? I am glad you have found a good doctor to help you and I hope she can get you moving forward to heal.

  10. #10

    Re: Borderline Personality Disorder frequently misdiagnosed

    Oh wow. Sorry the meaning of my reply did not come across too clearly. I never, for one minute perceived doubt. I just had no idea that there was a minimum age limit on when one can be diagnosed with BPD.

    As to your question about putting it behind me, well, you're sort of right. I have not fully succeeded at doing that YET, but that's what I want to do.

    The biggest difficulty is in getting away from the severe stigma of the medical profession. If I can see my own doctor, and her only, I'm fine. But when you use a wheelchair and have to see the odd specialist who loves to let the mental illness labels and stigma flow, you can't escape it.

    One day I made the mistake of agreeing to see a Resident at Emerge after my new, fantastic, family doctor had called ahead to make sure someone would see me because she knew I was scared of their attitudes. My doctor talked to the Resident, said she was great, I trusted her and agreed to go. Little did I know that the Resident would have to get clearance from the head honcho, he would refuse physical treatment and recommend I see a psychiatrist at the Chrysalis program for patients who have BPD. I don't know who the head honcho is in more than a name, but the treatment was denied.

    I went back to my GP and told her never again. If I need a specialist, I will be insisting on going to someone who is out-of-town.

    She has seen the notes and has since agreed to testify on my behalf, but believe me, it is not a nice thing to go through.

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