Dear Medical Provider,
You say that you are frustrated. You are angered by my inability to trust you and your treatment recommendations. Your ego/pride is wounded by my explaining my condition to you. Or, maybe, you are one of those rare gems of professionals who genuinely care and are concerned for my well-being, feeling helpless because you want to help and feel that I am hindering your ability to come to my aid. Whatever the reasons for your frustration, I have a message for you:
I have been irreversibly damaged by your profession. It’s a hard truth. The blame does not fall on your shoulders, but you are part of a community that has caused immense trauma that has left a mark and forever changed the person I am. There was a time when I trusted doctors, when the mere mention of a new doctor or hospital visit did not leave me quaking on the floor, battling flashbacks of medical neglect and trauma. The door to my care used to be wide open to all doctors, nurses, PAs, and any others in the medical field who wanted to participate in my care. In fact, I flung that door open with enthusiasm, so hopeful that I would find answers and help for my health.
But over time, that door was abused. Words and accusations flew wildly, knocking out the beautiful front windows on the entrance, leaving me cowering within. And so, ever so slowly, the door began to close. It wasn’t a conscious decision; most days I was not even aware of the sliver of space that got smaller and smaller with each new rock hurled. Until, one day, no one could get in. And I could not get out. A solid barrier stands between us, and you yell at me to tear it down, without ever questioning why it was necessary to build in the first place.
You tell me to trust you; you tell me to open the door, you pound with your fists without stopping to realize that your behavior is only furthering the belief that the barrier is necessary and the only way to keep myself safe. As one of my favorite quotes says, “Stop asking me to trust you while I’m still coughing up water from the last time you let me drown.” I did not become this way overnight. It took several years of neglect and trauma to shape the views, beliefs and fears that lock me inside. It was not one mistake, but a pattern of mistakes, arrogance, and actions that directly endangered my life that have created the guarded human in front of you. I did not ask to become this person; the medical field damaged me. I am learning to heal, but you do not get to judge or dictate a timeline for how I repair what your profession broke.
I did not ask for this trauma. I did not ask to feel like it is safer to die in my house than to get medical treatment in a hospital. I did not ask for not one, but two doctors tell me to my face that they would not give me an epi-pen when I have an allergic reaction because I “have a history of anxiety that you will take into account.” I did not ask to have my throat begin to close up and have an ICU doctor stand over me refusing to give me epi until my nurse yelled at him that I would code if he did not administer it. I did not ask to be literally starving with my body breaking itself down for nutrition only to be held in the hospital for six days with no nutrition because of the assumption that I was faking. I did not ask to fear for my life because of the arrogance and neglect of medical professionals.
My medical PTSD is not a result of the numerous possibly life-threatening situations my health has caused. I have not walked away with trauma from any serious health situation where I was believed, cared for, and validated by medical staff. My trauma is a direct result of the behavior of those taking care of me during my most vulnerable times.
Those patients who are the hardest to treat are the ones who have lost. Lost trust in the world, the people around them, humanity, and themselves as the guilt that comes after is oftentimes unbearable. The thoughts that I should have spoken more loudly, stood my ground, known not to trust you, are deafening. But, the reality of the situation is that I did not need to do anything differently, rather, you just needed to listen to the person who is the expert of their body and their condition.
We are not difficult, we are hurting, scared, and traumatized by the medical industry. It is not your fault, but it is your responsibility to ensure that you never cause your patients the trauma that we have suffered, to ensure that your patients see medical professionals as people who will help them rather than someone they need to protect themselves from. You and I can’t change what happened to me. For better or worse, medical trauma has shaped who I am and how I view the world. But, you and I can work together to heal not only myself, but others who have suffered the same ways that I have.
So, the next time you have a “difficult patient,” remember the experiences that shaped them.
A pain in the ass patient