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.