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“Do you remember?” Yes. Yes. Yes. I can’t forget. I’m not the doctor, but I relive those days over and over. I never left the building.

Great talk by Dr. Brian Goldman on how doctors are trained to be perfect and are not prepared for mistakes. All people will make mistakes, its how you handle them that makes the difference.

Part of the problem is the culture of perfection and shame that causes silence. This silence is damaging for both patients and doctors. The shame of the mistake is projected on the patient who then becomes a victim (or eventually a survivor, when I think I’ve survived I’ll use that word). It’s a vicious cycle and it needs to stop. I can accept that everyone will make mistakes, but you need to be accountable and responsible for them. How you make it up to the other person will make that mistake better. I don’t mean punishments, I’d love if the private clinic I went to required everyone to take a sensitivity and confidential workshop, but largely I want people to try to make things right. Often admitting the error and expressing regret is what many of us need to hear.

If the all the medical professionals I encountered were able to accept that they made mistakes it would have caused me less suffering. If the offending parties had apologized to me and then try to make it better I wouldn’t be as damaged. Instead they did everything to protect their selves and as a result destroyed my life. I am still alive, but I will never be who I was.

I’ve had so many things done wrong to me while trying to get healthy, that if all these doctors actually stopped and said:
“I remember 2006, I’m sorry I yelled at you and didn’t listen.

I remember 2006-2008, I shouldn’t have told you it was no problem and that’s just the way you are, I’m sorry I didn’t test your blood or send you to a specialist even though you kept coming in and complaining. I’m sorry that I made you believe you were okay, when in fact you were not. I’m sorry that my arrogance eventually led to your near death and caused cognitive and physical impairment. That if I had listened you could have a minor surgery or no surgery, rather than a major surgery that resulted in the loss of 50% the usable surface of one of your organs.

I remember July 12 2012, and I’m really sorry that I did that to you. My colleagues and I shouldn’t done that. It should not have happened. We shouldn’t have performed either of those wrong procedures/tests on you without medication or have humiliated you in the waiting room. I’m deeply regret that after hearing the troubling results of your condition that our staff subjected you to public humiliation, ridicule, and breached your confidentiality. I cannot imagine the physical pain and mental anguish we put you through. I should have followed up to see if you were injured.

I remember Sept 24 2012, my resident should not have said that to you and I should have listened and treated your pain. I’m sorry that both of us acted inappropriately and failed to treat the damage that my colleague did to you. I am sorry that I teased you about your upsetting experience with my colleague. I realized that my teasing undermined my initial apology when I said I deeply regretted the incident.

I remember Oct 29 2012 and I’m sorry that I misled you about your surgery and I should have treated your pain. I’m sorry that I did not take the issue of blood loss seriously. I wasn’t expecting someone so unusual. I’m sorry that you were harmed.

I remember Feb 15 2013, I’m sorry I didn’t listen to your history and give you the appropriate pain medication. I’m sorry that I misunderstood your heart rate and sobbing as anxiety rather than pain.

I remember Feb 16 2013, I’m sorry I didn’t read your chart and gave you the wrong medication and forgot to give you another medication for two days. That I forgot to get to you sign the DNR and that I didn’t put your medical stockings. I’m sorry that the 3 separate times you rang for assistance to go to the bathroom I always told you I was too busy, and left you in horrible pain.

I remember April 8 2013, I’m sorry that you suffered in constant pain for 8 months, the pain was preventable and I should have given you that shot and taken the blood loss seriously. I didn’t. I’m sorry. I’m sorry that I didn’t take any of your medical issues seriously.

I remember you, I’m sorry that you cannot step foot in any medical institution because of what we have done to you. I’m sorry that you need years of specialized mental health treatment for the pain and suffering we caused. If we had listened and treated you with basic human decency this could have been avoided.”

It would be a huge weight lifted if the responsible parties would own up to that. Actually the one time that someone apologize for their error was in mental health and I wept.

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(cross posted from my own blog and Kinja)

I would have taken the broken arm, at least it’s a pain people can see and can understand. 

I use to make art work back in the early aughts about when I was bullied in high school. One of my video art works,“Words”*, was about how people tell you over and over “forgive and forget” as though somehow you can just get over that. That sentiment was like a punishment. Every time I opened up  about being bullied, I’d get shot down with “you need to forgive and forget.” It takes a long time to get over five years of daily torment. I found I didn’t need to forgive and forget the people who viciously harassed me, but I needed to forgive myself for letting it happen.  I’m very hard on myself.  Of course, nothing is that simple. It’s never straightforward and there’s no single path to healing. 

Back in 05, I decided to get some counselling because making this kind of work was taking a lot out of me. I went to counseling at York University (where I was a student), and my evaluation went well and I was assured they could help me. But my assigned counselor was horrible. I talked about being bullied, humiliated in form of a public spectacle sexual assault (not rape, I know in Canada we think those words are interchangeable, they aren’t), how that was making me have panic attacks, and I briefly mentioned I was doing therapy in tandem for support. He heard the last part of that and said “You know, there are other people with bigger problems than you.”  I clammed up, he asked me if I wanted to continue I smiled and said “No, I’m great!” and left that place and found a private place to sob.

Now I  joke “I guess I didn’t fit the subject of his thesis.”  I should have complained, but I was ashamed and embarrassed, and I actually believed him. It was similar to when I was bullied. I didn’t want to talk about it because I didn’t want people to see what the bullies saw and start believing the bullies must be right about my general awfulness.  I got bullied by my ex-counselor into silence, because I didn’t want another one to agree and thus make me feel even worse.  

When I sought out counselling again to deal with the crippling stress, depression and anxiety of my medical problems. I got my family doctor to make a few suggestions of counselors because we both know I have terrible luck with all doctors.  I got three suggestions did some research and went to the first one and I started by telling my new therapist what happened last time and that I didn’t have high hopes for this time. It went significantly better and as a result I have gotten better (not that it was easy, it wasn’t, it’s no 80s clean up montage.)

Emotional pain is at best, difficult. People can’t see it, and they don’t understand it. They cover it up. We feel ashamed. We don’t talk about and it becomes worse. I talk about this earnestly as a person who represses everything and still has difficulty crying in front of my therapist and instead I twist my face into a contorted smile. My “I’m gonna tell you something awful, and I’m gonna cry, but I will smile to stop myself from crying because I can’t stand the humiliation of crying and appearing weak.” smile.  I have a double standard, I’m totally okay with other people’s tears and will comfort them, but me? No, there’s no crying allowed here.

I’ve gotten better. There was one session where I sobbed for twenty minutes because I was so upset that my surgeon let me suffer for eight months, because he didn’t believe me that I was still in pain from a ‘simple’ test, and all he had to do was give me a shot to stop the pain. He told me this matter-of-factly after my surgery because I kept asking “Why was I in pain for so long?”  The pain was terrible, but the knowledge that no matter what I said or how I said it I would never be heard, and that I’d suffer again and again because no doctor would ever believe me was devastating.

I partially blamed myself, because I wondered if he refused to listen to me because my family doctor and I complained about his colleague who mistreated me and now I was “the difficult patient.” I’m not difficult, I simply don’t ‘like’ being abused.  I use ‘like’ in this way, because my surgeon’s secretary made a snarky comment about how I “didn’t ‘like’ the private clinic”. I explained “I didn’t ‘like’ being lied to about which procedure I was receiving.” She didn’t ‘like’ that comment. 

And once again, there comes this silence. That awkward silence of ‘we don’t talk about that’ or ‘I don’t know what to say’. The second option is better. What am I suppose to do? How do I stop that from happening again? And will people listen and understand? My life seems like a cycling of bullying and shame silence, whether it be by teens, my ex-counselor and now doctors. I want it to stop. It’s bullshit. People like to treat me like garbage, and now I’m slowly going to write about it. It will take time, and maybe one day, someone hear me or I’ll learn how to deal with it and it will stop. 

To quote Captain Picard “I’m drawing the line here.”

As a side note on visible pain when I was going through the final arc of my medical malpractice mistreatment misadventures garbage, I was in constant pain for several months. The only time I received general and overwhelming sympathy, empathy and support from others  was when I got a root canal.  For some reason a root canal was an acceptable and understandable form of physical pain. I’m assuming this stems from a general fear of dentists and that most people go to a dentist and there is norm for dental experiences. Whereas crippling anxiety and constant pain in my uterus was a pain that was not understandable, except by an exclusive few, which resulted in silence and occasionally questions on whether or not that pain actually existed.  

I’m no social scientist, but it seems we have difficulty believing things that are happening to other people but have not happened to us. Root canals are generic enough that people seem to be trained to be sympathetic to it; whereas any illness involving sensitive organs seems to cause people to be at a loss of words or in disbelief. Though I suppose we never ask “how’s your uterus treating you these days?”

*the work is slightly dated, but the premise is still there. 

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