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David Baxter

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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
 

amastie

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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.
 
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Andy

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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.
 
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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.
 

Andy

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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. :2thumbs:
 

David Baxter

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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.
 
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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.
 

Andy

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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. :)
 
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Oh wow. :eek:mg: 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.
 

Andy

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lol That's ok. it's hard to tell tone on line so easy misunderstanding both ways.

I'm glad that you want to put this behind you. I was just checking. lol
I understand having to escape the stigma. For me even in going to a MD at a clinic that does not know me, they just see "psychiatric" and you can tell the complete shift in attitude. Not all of them obviously. It's ironic that a lot of Dr.s, again not all of them lol, are huge contributors to stigma. They were raised with there own beliefs on the subject to I suppose and it's not easy to just forget that because of your profession...and I am babbling.

So you are going to court with all this? It's hard to get anyone to listen to you once you have been given a diagnosis. Anything you say is dismissed way to easily. I understand questioning some people but to dismiss just like that can be devastating. Talking to a wall.

I'm glad you have your Dr. to help you. Are you working on getting you medical records sealed or something to that effect? Removal of all or most psychiatric history? May I ask what happened with how you ended up in a wheel chair? Was it TD or a stroke or something? TD scares the crap out of me. One of my biggest fears, if that ever happens to me(in the face I mean)...well it would be the last nail, no questions asked.
 

ColleenS

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There have been several posts indicating that personality disorders cannot be diagnosed in anyone under the age of 18. I wanted to provide some information to help correct this common misperception in an effort to help dispel the idea that clinicians who have rendered such a diagnosis to an adolescent were unequivocally wrong based on the patient's age alone. According to the DSM-IV-TR, personality disorders, with the sole exception of Antisocial PD (which requires the individual to be 18 or older), CAN be diagnosed prior to the age of 18 as long as the features of the disorder have been present for at least a year. The general description in the introduction to the "Personality Disorders" section of the DSM-IV-TR further specifies that "Personality Disorder categories may be applied to children or adolescents in those relatively rare instances in which the individual's particular maladaptive personality traits appear to be pervasive, persistent, and unlikely to be limited to a particular developmental stage or an Axis I Disorder (p.687)." Many clinicians are understandably cautious about diagnosing an individual in early adolescence with a personality disorder, given that personality traits are still largely "under development," and I don't believe that I have ever personally seen a personality disorder diagnosed in someone under the age of 12 (after nearly 20 years in the mental health field I have never ascribed such a diagnosis to a pre-adolescent patient), but there have been occasions when an adolescent clearly and persistently displayed traits of a personality disorder (typically borderline PD) and the diagnosis was both warranted and useful for conceptualizing a strategy for treatment. The criteria for most (if not all) the diagnoses in the DSM-IV can be found online if anyone is interested in learning more about the criteria for a specific diagnosis.
 
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Oh boy, does this one have me concerned.

Please, I urge you to look into the effects of social isolation, bullying, trauma, and other things because you will see the symptoms are close to the same.

I had that label for years, but now that I've broken free of it, I can reflect back and see that it was never a problem to begin with.

I was severely bullied at school so I became depressed and, at the age of 15 I was hospitalized, diagnosed with a borderline personality disorder, and medicated. They treated the symptoms but no one would look into the bullying or the effects of being shunned and forced to be so terribly alone. When I got out of the hospital and the kids found out why I was there, it was really bad; so bad in fact, that I learned to develop an intense fear of school and I started to avoid others.

These issues led to a chain of events that more or less wasted the majority of my life and cast me out as abnormal, but since the mid-1990's, when I developed permanent nerve damage from medication and had to start using a wheelchair, I have been able to pull myself back from the brink.

If you want to read the whole story, please read my Blog. I just finished turning it into a radio show that will be aired on CFRC community radio next week. To listen, tune into www.cfrc.ca between 4:00 - 5:30 on October 25th. My real name is Louise.

As for determining the diagnosis, I can only say that when I gave up hope, the symptoms fit the bill of having a borderline personality disorder. If you read my Blog and then consider that, several basic social needs were not being met; the need for security, social acceptance, and a feeling of belonging, then it is my hope that one will look outside the box and realize that the symptoms can often describe more than one thing. The label of a borderline personality disorder can be hugely stigmatizing so I urge you to consider all other possibilities before applying this diagnosis; especially to one who is only in their teens.

I can tell you from experience that it became next to impossible to retain hope, avoid a depression, and avoid getting sick when I was missing social contact, acceptance, and the, oh so important, sense of belonging.

I am still somewhat deficient in these areas because a wheelchair now creates a new set of barriers that can prevent me from accessing a lot of things. However, I have become a very strong activist with a goal of sharing my story so people can learn from it and act in a way that will prevent a similar pain from happening to others.

It is through the activism that I am able to keep busy, have a sense of purpose, and even get a bit of social contact.

For the 22 years I was in the system, I rarely got touched in a kind and loving way so, when someone gives me a rare hug, I break into tears of joy and overwhelming gratitude. This can cause problems because the response is so over-the-top that it alarms others, but now I'm starting to learn how to control that response, as well.
 
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I have an update to the BPD saga. The update is that I just had a Health Professional Appeal and Review Board Hearing on Thursday about ongoing problems I'm having with stigma from the doctors.

Here's the history: In 2007 I got a full-time job. I got off ODSP (the disability pension in Ontario) and managed to sustain the job, rarely missing a day, for 18 months. In March 2009, 15 months after I got the job, I had a minor surgery - a suprapubic catheter was inserted. It failed. It caused incredible bladder spasms, was not draining, and put me into incredible pain.

Just before the surgery, the family doctor I had at a clinic I'd been with for 10 years, recommended I move on to a new family doctor who could give me more continuity of care. I use a wheelchair and the old clinic was a teaching facility. This meant I didn't always see the same doctor.

I left that clinic and, for about a month, had no doctor. It was during this time I had the suprapubic catheter inserted. The problem is, it failed. It wasn't draining properly and, because of being hypersensitive to things, the bladder objected. It went into severe spasms which made the pain unbearable. With a pain scale noted on my chart as 10+++ they sent me home with no pain medication and no home care services. I was in so much pain I could not transfer into bed. I had to sleep in my wheelchair that night. The next day the nurse came, said they did not receive the orders from the doctor about dressing changes, so it was my duty to keep phoning them until I got someone. The nurse left. For the next 2 days the dressing was not changed. I phoned the CCAC and asked for help. They got the order, sent in the nurse, and after she changed the dressing, she was given the nasty task of telling me that the service was cut off because I was going back to work and it was clear I was not housebound. The nurse also informed me that I could no longer take a shower or bath. I was in shock. The pain was unreal and she told me it was abnormal; I was to go to Emerge to get help to deal with the pain.

Well, it went downhill from there. Emerge didn't agree the pain was my bladder. They did a CT scan of my back and called in lots of psychiatrists and social workers each time I showed up (approximately 10 times in 2 months because no one would help me).

The thing is, the frequent Emergency room visits prompted them to search my old records. They found the BPD diagnosis, that was banished in 2004 with extensive psychological testing, and put it front row centre on my file. It had been buried for years.

In the middle of all this, I met a new family doctor. He wouldn't deal with the catheter pain either. Instead, he got into the e-health recording sharing system, found out I was mentally ill, eventually told my employer I was mentally ill with an adjustment disorder and, when they didn't believe him, quoted the DSM-IV and for good measure added that I had suicidal ideologies. He didn't say when I had them - that those ideologies were expressed about 10 years earlier.

After 11 visits he fired me and I lost my job because they wouldn't believe or accept his medical.

I don't know how I managed to endure the pain of that catheter or the indignities of diapers for 2 months, and I don't know how I managed to endure a doctor who refused to treat anything physical because of the past history he'd found, but the good news is, that I did.

I now have a paper trail a mile long to prove what's going on. I also have audio files to share the reality of what's been going on.

When the doctor fired me, I reported him to the College and Physicians and Surgeons. They took 596 days to investigate, refused to talk to anyone current doctor, extracted really old notes about bad behaviour (I once swore in a doctor's appointment and the doctor wrote in the notes that swearing is not conducive to a healthy doctor-patient relationship, and exonerated him.

I appealed it and just had the Health Professional Appeal and Review Board hearing on Thursday. I was up against 2 lawyers. I couldn't get one myself even though I called everywhere. Because I couldn't get a lawyer, I spent 3 months preparing for it. I read the Regulated Health Professionals Act, the Medicine Act, The Professional Misconduct Act (a sub-section of the Medicine Act), my medical file and found out that audio recordings of doctors appointments could be admitted into evidence. I was able to put forth a pretty compelling case. The frustrating part is it will take a long time to hear the verdict.

I have no idea what the outcome will be but I'll share one letter I read out at the hearing to show how doctors do, in fact, stigmatize people with a BPD diagnosis. This letter was written by a family doctor I had at the old clinic back in 1998.

She wrote:
Most physicians have dismissed her pain as "psychosomatic" or worse, have labelled her as a "professional patient."

It then goes on to say:
She has been on up to 900 mg of morphine daily. At her request we have her on a weaning regime so that she can discontinue the morphine - when we began she was taking 600 mg per day. She is down to 320 mg per day with the occassional dose of Tylenol with Codeine. We are weaning slowly to give her body a chance to stabilize the pain - with each decrease the pain at first increases then returns to baseline. {me} has tried to decrease too quickly and has determined the pain is overwhelming and she cannot adapt. She does not experience withdrawal symptoms to my knowledge.

I recently had her assessed by the Rehab physician at our local Rehab facility. The referral was to assess her for an appropriate maintenance program so that she does not become unnecessarily deconditioned while confined to a wheelchair. His opinion was that until {me} is willing to actively try walking that there is no place for rehab programs.

What's not written in the doctor's note is that the rehab facility told me I would lose the disability pension (because I was no longer seeing a psychiatrist) and the wheelchair if I could walk the length of the parallel bars twice. I was terrified so I refused to actively try.

The medical note then goes on to say:
{me} has concurrent psychiatric illness - she suffers from recurrent depressive episodes. She at one time was also diagnosed with a personality disorder which unfortunately prejudices the approach many physicians take to her problems. I find that the personality problem only surfaces now when she is extremely stressed. Even this is improving though as she has come through the last two or three crises without reverting to dysfunctional behaviour.

Psychotherapy has not been an easy task. We are short of psychiatrists who are able to take on a patient like {me} - psychiatrists who have wheelchair access, whose appointments are covered by OHIP, and who have an expertise in psychogenic pain, if indeed that is her problem. Many psychiatrists feel that a diagnosis of personality disorder is not treatable. Like many patients who have reached a dead end in our medical system {me} has unpredictable responses to the medications we use; increasing the difficulty we have treating her problems.

That letter was written in 1998.

Since I reported the doctor that fired me to the College of Physicians and Surgeons, 2 specialists have retracted their original diagnosis of tardive, replaced it with Somatization Disorder, and written that I won't accept their diagnosis and therefore won't be compliant with treatment. Now I can't get any specialist health care. Thank God I'm really healthy and I have a good family doctor who will likely be able to look after everything until the health professionals board comes back with their verdict.

I'm not sure what else I can do to get back some fair and equitable treatment by doctors. These actions are not legal.

I would love to get this into a public inquiry or a class action law suit. Any ideas?
 

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