Misdiagnosis.

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This is the piece of paper I was given as a “formal” diagnosis back in 2001.  It was the first time I learned about PTSD.  It was also the first time I was misdiagnosed with Borderline Personality Disorder.  In reality, my PTSD is severe, my current Dr told me it was one of the worst cases he had ever seen.  But Dr. X, in his wisdom, after knowing me for a only a few months decided the impact of my trauma was “mild” and instead the main factor in my illness was untreated borderline personality disorder.  As far as I can see, this assumtion was made due to my self cutting behaviour.  He failed to take into account that before being abused I had no mental health problems.  He failed to take into account that self harm and anorexia are common coping techniques for sexual abuse, especially in young women.  He failed to notice that my out of control self harming behavior and suicide attempts began only AFTER taking a cocktail of psychiatric meds. He failed to see that I have almost none of the diagnostic criteria for BPD, except the self harm.  I had long term friends, stable relationships in my life.  I was not impulsive or risk seeking, except with regard to the self harm.

Over the next few months Dr X also placed a value judgment on this misdiagnosis of Borderline.  He was the first person I talked to about the sexual abuse, and as such I trusted him and looked to him for support.  This was a mistake.  I didn’t have a choice as to what psychiatrist I saw, he was the one assigned to me.  He gradually saw me less and less in his individual practice.  I would show up for appointment only to find he had left for the day or was on call in the ER.  Then he changed his practice to work solely in the urgent psychiatry clinic.  The only way to get an appointment was through the ER.

I had no family Dr and nobody to renew, monitor or change my medications.  He told all the psychiatrists at South Street that I was borderline and so they would not take me on as a patient.  He refused to give me a referral to a community psychiatrist and I had no family doctor.  I felt betrayed.  I felt rejected.  I felt worthless.

I started to use the ER on a regular basis, mainly after cutting myself.  I would ask for a psych consult about 50% of the times I cut myself.  I would ask the doctor on call to please assign me a regular psychiatrist to follow me.  I begged.  I pleaded.  I was rejected.  I was sometimes given an appointment at the urgent psychiatry clinic, where I knew I would see Dr. X again.  No way to break free, systemic barriers and misdiagnosis kept me trapped.  The more I protested, the more I harmed myself, the worse the situation got for me.

The treatment that I received at South Street was appalling. I know I am not the only one and I know this hospital is not the only one with issues.  Women survivors of childhood sexual, emotional and physical abuse are often misdiagnosed with borderline, a diagnosis I see as basically a wastepaper basket label.

I remember during my second last year at South Street, 2003, I attempted suicide again.  This time I cut myself extremely deeply, diagonally across my arm.  I remember lying on the floor in the hallway of the apartment I shared with my boyfriend.  I was dizzy, almost blacking out.  I felt the quiet empty feeling in my head and I tried to decide whether or not to keep pressure on the cut or let it bleed and let myself give in to the pull of unconsciousness.  I lay there for a while, I’m not sure how long.  I finally decided to go to the hospital.  I think I took a cab, but I’m not sure.

At the hospital, the medical doctor that first assessed me actually put me on a Form.  He got a security guard to sit in my curtained area to watch over me.  I remember I was studying for my 4th year Health Sciences exams.  Somehow the irony of this was lost on me at the time.  I had just tried to kill myself, I had a security guard watching me and I was studying for a university exam in the ER.  The medical doctors fixed up my cut with stitches.  By this time the routine of receiving stitches was, just that, routine.  I had received hundreds, sometimes as many as 50 at a time.  After I was fixed up I was transferred to the psych section of the ER.  I don’t remember too much about what happened but I do remember I was told that there were no beds, that I could not be admitted.  I told them that the cut had been a suicide attempt, not “just” self harming like I usually did.  I begged to be admitted. But the psychiatry doctor was firm, there were no beds for me.  I couldn’t understand it, the medical doctor had thought I was a risk to myself, so much so he had security watch over me, but psychiatry released me.  I learned over the years at South Street that as soon as a doctor had access to my past charts I was treated very differently.  I was generally taken seriously when a health care provider spoke to me and listened to me.  When that same health care provider saw my chart, I was turned away, disrespected, ignored and mistreated.  This is what misdiagnosis with BPD means to me.

I remember being discharged from the ER that day.  I was desperate.  I still wanted to die.  I remember standing in between the double doors of the ER crying.  I didn’t know where to go or what to do.  I felt hopeless.  It was late evening, it was spring or summer and it was still light outside.  As I stood there crying a door opened, it led out to the ambulance bay right beside the place I was standing.  Our of the door came a gurney, with a black body bag on it.  The door led to the morgue which was also in the basement of South Street.  The body was loaded into a funeral home vehicle and drove away.  The image impacted me and haunted me.  I wondered if my friend Darlene was wheeled out that very same door a year before. I was preoccupied with death.  I felt scared and I felt lost.  I just wanted someone to help me.  I’m not even sure I really wanted to die at that point, I just wanted the pain and confusion to stop.

Eventually I left.  I took the bus home, back to the apartment where I’d tried to end my life a few hours earlier.

I think that people often conclude that because an injury is self inflicted, that the person chose it.  That they are not traumatized by it or impacted by it.  But I believe that self inflicted trauma also needs to be recognized as a contributor to PTSD.  I think that my experiences within the psychiatric system alone could have caused PTSD in a healthy person.  In a person who was already traumatized they were that much more severe.  Sometimes comfort and sympathy are not provided to self injuring people.  We are treated as though we “knew better” and are essentially “wasting time and health care resources” or taking away care from those who “really need it.”  I believe that every person who self harms would have chosen a different option if they felt they truly had a choice.  Self harm isn’t cool, it’s not fun, it’s not something to envy or idolize.  It’s dangerous, it’s terrifying, it is not glamorous in any way.   It leaves lasting scars.  Scars I will live with for the rest of my life, and scars that trigger memories of times in my life I would much rather forget.  I get flashbacks around my self inflicted trauma in the same ways I do to the abuse inflicted on me by others.  And because I was abused in the health care system the two are not distinct.

There is no easy solution to these problems.  People who self harm need and deserve compassion.  PTSD should be taken seriously and not dismissed as a disordered personality.  PTSD is treatable.  Believing survivors is the first step.  Yes, this means as a society we all have to step up and acknowledge that violence and abuse is much more prevalent than we ever imagined.  We need to collectively work to end victim blaming and shaming and fight rape culture.  Because powerful white male doctors, with all their privileges, labeling my personality as disordered is rape culture.  I became sick and disabled because of abuse; I’m not disordered, I am a survivor.

 

No, you don’t have the right to torture me

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This is what the stigma of being misdiagnosed with borderline personality disorder means to me.  Trigger warning for description of self harm and abuse.

Monday November 8, 2004

I presented to the Emergency Room at South Street Hospital with a self inflicted cut on my arm.  By this time I had been using hospital psychiatric services for over 3 years.  I was a frequent flyer, a regular, a repeat customer and I was not popular.  I had experienced many unpleasant experiences in the ER.  I had grown accustomed to medical students poking at me and asking ridiculously offensive questions.  The worst was “Why don’t you cut yourself deeper so it would hurt more?”

I’m only going to say this once.  In my opinion someone who uses psychiatric services heavily is actually in MORE need, likely MORE desperate and experiencing MORE complex issues that someone who is visiting for the first time.  As mental illnesses progress folks become sicker and more marginalized by society.  What is needed are more individualized care plans, more compassionate care, more empathy and more listening to the survivor.  The survivor themselves is the expert in her own healing.  One size fits all models of care do not work, they have never worked, and will never work.  Each person is unique and experiences a unique mix of oppression and marginalization as they live with their illness.  Social and structural factors are an important thing to consider.  The survivor does not exist in a vacuum.

Believe me, if someone truly had options, they would NOT choose to spend their lives in psychiatric institutions.

Part of the reason I used the Emergency Room so frequently at that time was because I had neither a family doctor, nor a psychiatrist seeing me for ongoing care.  Lack of access to primary and preventative mental health care is a huge issue.  Another major barrier is the existence of a two-tiered mental health care system; whereby folks who have financial resources are able to access private care from psychologists and social workers and economically marginalized people (the sickest and most at risk) often face long waiting lists, lack of affordable housing and gaps in services.

By that time Dr. X had stopped seeing me.  This happened over a period of months.  First he would cancel appointments, then not show up for them.  I was busing across town to meet him and he just would not be there.  Then he switched from an outpatient practice and seeing inpatients on the 7th and 8th floor to working full time in the Urgent Psychiatry Clinic and the ER.  When he switched his practice I was not assigned to another doctor, nor was a given a community referral.  Thus, my only option was to attend at the ER to get a psych consult and an appointment with Urgent Psychiatry.  I begged and pleaded and searched for a new doctor but I was not able to find one.  I found out later that Dr. X had essentially blacklisted me at South Street and no psychiatrist would take me on because I had “borderline personality disorder.”  I was also denied access to the PTSD treatment program, after waiting on their list for 18 months.  I was told I didn’t meet the criteria for the program.  Ironic since PTSD is my main, if not only, diagnosis.

But I digress…back to November 8, 2004.

I waiting in the waiting room for about 1 hour before being brought back into the curtained treatment area known as OR 2.  When I was directed to a bed I began crying and was visibly upset.  A nurse arrived to take my history, but she was interrupted by Dr. P who dismissed her saying “you are wasting your time.”   Dr. P spoke to me in a curt and derogatory manner, asking to see my laceration.  He took a quick look at it and said he was going to staple it.  I began crying and asking him to please stitch the cut instead because staples really scared and triggered me.  Dr. P laughed at me and asked me to lie down and proceeded to quickly clean the cut.  He then held my arm down and proceeded to place 8 sutures into my forearm without using any local freezing or pain relief.  I was sobbing and screaming and he continued offering no sign of sympathy or concern.  I couldn’t understand why he was not following procedure and I was confused and distressed.  I felt as though I was being purposely targeted and tortured because my wound was self inflicted.  I felt like Dr. P wanted to “teach me a lesson.”  I was known to him from previous visits and I got the sense he did not want to see me in “his” ER again.

After he was finished the nurse came back and tried to calm me down.  She reported the incident to the charge nurse who also comforted me and offered me Advil.  I was then taken to the psych waiting area to meet with the doctor on call.  I was very upset, triggered and in a lot of pain.  I remember curling up into the smallest ball I could make in the uncomfortable plastic chair which was bolted to the ground.  The floor was covered in green tiles.  All the furniture was bolted down, presumably to stop patients from injuring themselves of others.  It was a cold room, I remember I was shaking and probably in shock.

I reported the incident to the College of Physicians and Surgeons a few days later.  The treatment I received was abusive and was physical assault.  I came to the hospital (already living with PTSD) and I was traumatized in a time of crisis.  I firmly believe that if my cut had not been self inflicted and if I had not been labelled within the hospital as a “hopeless case” this assault would not have taken place.

Procedure allowed Dr. P to write a response to my complaint.  In his response he actually admitted to speaking with Dr. X who told him that I “had long standing borderline personality disorder and that none of his colleagues would take [me] because of this.”  Incredible!  Psychiatrists in the hospital were actively denying me care due to a psychiatric misdiagnosis?  I wouldn’t believe it except I’ve seen my charts and I know it to be true.

Dr. P’s explanation for not using freezing was that he thought my arm was so full of scar tissue that I would not be able to feel the sutures.  This made no sense since I was screaming while he stitched my arm.  He wrote that he offered me anesthetic which was a lie.  Luckily the two nurses who were working supported my account of events.  Also the Dr did not note in the chart that I had refused local anesthetic which is standard protocol before proceeding without it.   I found out later that my complaint was not the first one made to the College about Dr. P and his behaviour in the ER.

The College upheld my complaint and Dr. P was ordered to appear before the College for discipline.   I’m not 100% sure what that entailed but my complaint was heard.  I did feel validated by that, but it did not undo the trauma that I experienced.

I experienced torture within a Canadian hospital.   This happened because of the label of borderline personality disorder.  This happened because I wasn’t getting better quickly enough, because I wasn’t acting in a way that was expected of a survivor of violence.

But this should not have happened, not to me, not to any person.  Especially not to a survivor of abuse.  Self harm was a normal coping reaction for me.  My personality is not disordered, I survived ongoing sexual and emotional abuse; as well as dangerous side effects to the very medications the hospital kept pushing at me.

My message to the world:

Please treat folks who harm themselves with care and compassion.  Chances are they are already judging themselves far more harshly than you ever could.  Self harm is a misunderstood coping technique, it is not a way to get attention.  If you haven’t harmed yourself, please don’t judge, you haven’t walked in our shoes.  The reasons why people turn to self harm are complex and layered. By showing love and compassion to the self-injuring person you could be literally saving their life.  We don’t want or need to be saved, we just want to be respected, heard, and valued.

If you do harm yourself, please know that you are loved and important.  I hope one day you will find other ways to cope.I support you and I am glad you are fighting rather than giving up.

The world is a better place because you are in it.

 

 

Follow me, follow me, follow me, down, down down…

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I began taking a psychiatric drug cocktail around February 2001.  At that time I was mainly scratching my skin, enough to bleed, but superficial marks.  I was having almost daily panic attacks, insomnia and nightmares.  The idea was that the drug cocktail would help all these symptoms.

On my 3rd admission to South Street 7th floor, I met with Dr. X.   We were sitting in my hospital room.  I had a bed by the window and this was a ward room with four beds separated by curtains.   He sat on the chair that was provided for visitors and scrawled some words on a scrap piece of paper.

Major depression

Anorexia nervosa (in partial remission)

Post-traumatic stress disorder (mild)

Borderline Personality Disorder.

This moment changed the direction of the rest of my life.   Even today, at 35 years old the impacts haunt me.   Dr. X explained each of my diagnosis to me one by one.   When I learned about PTSD I felt a weight lift.  So many things suddenly made sense, why I startled so easily, the nightmares and intrusive thoughts.  PTSD was a psychiatric label, but for me it was a useful one.  It made me feel less alone, less crazy to know there was a word for what I had been experiencing since I was 15 years old.

The issue was the last line in his list.  Borderline Personality Disorder.  What did that mean?  How could my personality be disordered?  Remember that I had only just begun to recover and process memories of sexual abuse and that was the immediate trigger of my instability.   Dr. X explained that because of my self harming behaviour this was the diagnosis that fit best for me.   Over the years I would learn many things about borderline personality disorder and how it is used as a label to marginalize women survivors of violence and abuse.  But in the next few years all I learned was that as soon as a doctor in the hospital saw that diagnosis I would get treated differently, with less compassion, less humanity and less kindness.  Quite simply the hospital staff began to give up on me.

A terrible paradox began to occur.  The more I felt that the hospital staff and Dr. X did not believe and validate me, the more I acted out.  This was not a conscious decision, but I soon learned that without harming myself I would not get hospital care, and after a few more months, I began to be turned away from the Emergency Room on a regular basis, told there were no beds, that hospital stays did not benefit people who were borderline.

Something else was happening during this time period.  The toxic soup of psychotropic drugs were beginning to poison me.  I was 20 years old, still a young person.   SSRI anti-depressant medications can be very dangerous for some young people.  They can trigger impulsive self harm and even suicidal thoughts and actions.  They can create an almost hypomanic like state in someone who is not bipolar.   This is what happened to me.  But all the while I kept believing “Drs don’t give you medicine to make you sick”

Anti-anxiety and anti-psychotic medications slowed me down.  I found myself sleeping more than I wanted to, napping during the day, living in a fog.  I also became more intense and more impulsive with my self harming behaviours which escalated extremely quickly between February and April 2000.  Soon I was harming myself daily, sometimes multiple times a day.  My arms looked like a mess of scars, cuts and scrapes.

In April 2000, I bought an exacto knife and for the first time I cut deeply.  Down the rabbit hole, down, down, down…I went to the Emergency Room by myself and received 9 stitches by a medical student.  When the resident came back to check his work she told him the sutures were done incorrectly.  I waited, but she did not offer to fix it.   The first time left the worst scar,  6 years later it still hurt me so much I had plastic surgery to repair the scar tissue.   I imagine that if this wound had not been self inflicted, the resident would have corrected it and been concerned about the potential scar.

One week later, walking back from University I became consumed with thoughts about ending my life.  These thoughts had become an almost constant companion, but that day there was an impulsiveness that was new.  Almost without thinking I overdosed in my apartment.  Shortly after I told my boyfriend who drove me to the hospital.

I don’t remember very much about what happened after the car ride.  I do remember drinking activated charcoal.  I still have nightmares about this and I still have trouble drinking or eating things with a chalky texture.  It was black and I was drinking it from a bottle with a straw.  I was confused and kept asking why I was drinking it.

The doctors discharged me home after a few hours.  I vaguely remember the car ride, I remember throwing up in the parking lot of my apartment building and many more times that night.  I don’t remember going to bed or much of that evening.

It confused me that I was sent home.  Surely a disoriented, drugged young woman who had just tried to end her life was not the person who should be walking out of the hospital.  I must have told them I felt better, but I can’t imagine their thought process in discharging me so quickly.

This was not the last time I tried something like this.  Looking back from the perspective of a wiser adult I know that:

a) SSRIs or anti-depressants of any kind make me extremely ill/hypomanic, suicidal, impulsively self destructive, and more depressed

b) benzodiazapenes make me extremely suicidal after only a few doses, let alone after taking them daily for weeks.

c) almost every psychiatric drug has similar side effects (ie. making me act like someone who might have borderline personality disorder)

Yes, Drs do give people medication that makes them sick.  They do it every single day and then label those same people as sicker than they were previously, with labels that stick with them for life.  No matter how recovered I might be, no matter how well I am, no matter how functional, those three words (borderline personality disorder) still have the power to put me into a dark box.

I know that I’m not alone with this.  Many women who live with PTSD, and who have used self harm as a method of coping,have been labelled and marginalized this way.   And so many youth became ill taking anti-depressants that they now have black box warning labels advising of the increased risk of suicide.

Scars criss cross my entire body and sometimes I wonder, if I’d never consented to taking the medications if my body would look differently today.  I know my life would.