I Blame The Doctors

Last week, we requested full and complete copies of Ella’s medical records from every doctor or hospital she saw in the last eighteen months. Last night, we received the digital copies of her complete file (including notes) from the neurologist who finally diagnosed her as having “Abnormal Muscle Movement.” Dr C was the mad genius whose frenetic energy made me nervous and unsure about his ability, but beneath his mad scientist air was a very perceptive man. He had a lot to say, in those notes, about what her muscles were and were not doing, and why it was a puzzle to him. It was fascinating to read, and I couldn’t help but wonder why I was only learning about this now. Why did it take a request for her files for me to be let in on what he thought could possibly be going on with her?

He only saw her twice, once in May a month after she began to lose her legs, and then in late September after the damage was done. While I’m still pouring over his notes and finding new areas to research and rabbit trails to run down, what knocked me down were the changes he saw in her personality in that brief span of barely five months.

In May, he described her demeanor as “bright, friendly if shy, articulate, helpful, pleasant”

By September, it was an entirely different story when he wrote “angry, sullen, distrustful, anxious, hostile.”

Of all the things I’ve read as I’ve made my way through her records, this is what upsets me the most. It’s not the loss of the use of her legs, or the radical ways in which her life has changed. It’s not what this has wrought on our entire family. It’s the simple observation that the specialists and experts she met last year changed who she was, and taught her not to trust.

Dear Doctors,

I blame you. Her anger and resentment is completely your fault. You took my friendly, trusting child and created a girl who is sullen and resentful towards anyone in scrubs or a lab coat. You taught her that you were not on her team, but were her adversaries to be struggled against and overcome in the quest for answers. That’s all on you.

Five months and sixteen doctors and our daughter’s view of the medical profession is forever changed. Five months of your not listening – to her, us, or our family doctor. Five months of treating her as a “case” instead of as a human being. Talking down to her. Talking down to us in front of her. Refusing to test her for anything which might mean contradicting a colleague. Accusing her of acting and recommending that she be punished for it. (There’s a special place in my heart for the ER doc who said that.) Refusing to look at the extensive notes and timelines I brought to every doctor appointment. She saw me cry and beg for your help, and more than one of you actually said the words “that’s not important.” Why? Why was it not important? Why was she not important?

She heard you. She heard all of the things you said and all of the things your demeanor towards her said.

And the shame of it is that she needs you. She’s a paraplegic who will need doctors and their expertise for the rest of her life. The doctors you’ve taught her will not be helpful. The people you’ve taught her not to trust.

Thank you for that. Thank you for taking a crappy situation and using your arrogance and lack of professionalism to make her entire life infinitely more difficult.

What you kept forgetting last year was that she was a person not just a set of symptoms. She was a little girl who was frightened by what was happening to her body and her life. She was scared of the hospitals and you made her even more nervous. It would have been so simple to teach her that you saw her as more than a piece of meat, that you saw the beautiful unique and wonderful person that she was and still is. That you saw her humanity.

You didn’t do that, and now her therapist and I will spend the next few years undoing the damage that you have done so that she will be willing to come to you in the future.

The next time that you step into an exam room and look at the person sitting there, please remember what your actions and demeanor have done to our daughter and resolve to be better than that. Remember that you are teaching that patient not just about yourself, but about your profession as a whole. What you do and say and how you say it will affect their perception of doctors for the rest of their lives. It’s a huge responsibility, but it’s not a hard one.

Be kind. Treat the child in front of you as if they were your own beloved child. Because that’s what they deserve from you.