Thursday, July 26, 2012

Open Letter to the Medical Community

Several years ago I had a complicated migraine/migraine varient that left me with residual neurologic deficit mainly  in the .area of memory To say the care I got at the beginning of this episode was shoddy is being generous. After I was doing better, I put my journey in poem form an sent it to the doctor's office and hospital that were involved. I did this in hopes their care would improve.I feel any medical professional could benefit from reading this.

Feel free to borrow what you want to adapt this to your situation if you want to send this out to your care givers. If you do this, just credit the source. I previously published this poem on another site.

Dear Medical Community,
At times, you looked at me and yet you did not see me.
How could you look at the report in front of you, tell me the "good news",
that nothing is wrong with me, without ever looking at my face?
How can you tell me nothing is wrong without looking at me?
Why don't you look at me? Look at me! You haven't once looked at me.
Look at my face, please. See how my mouth lists to one side.
See how difficult it is for me to speak.
There is something wrong;
your report may be correct in that no anomalies were picked up by the test.
The test ruled some things out;
that doesn't mean that the problem doesn't exist.
How could you try to send me home without once actually looking at my face?
When I yelled at you to look, you actually looked,
As a physician extender you stated, "you don't know what else to do..."
Why didn't you call the physician, whose service you were on?
That's your responsibility; that was what was required by law, if you don't know what to do;
You shipped me to the ER.
You failed me...
You failed yourself...
At the ER, I became "the patient going to ICU bed 5";
the one wearing the one-size-fits-none-gown
with a medical record number on my wristband,
a wristband which belonged to an elderly gentleman.
Amazing and all this time I thought I was a 45 year old female.
Next will you not look and go on to  misdiagnosing my gender,
and  saying I'm delusional, and only think I'm a woman because you failed to look
Oh, I forgot. I'm the patient; you're the medical deity;
isn't that what you think MD stands for these days.
Yes, mistakes are made in a medical environment;
makes me wonder about the test I had, but I digress...
I heard the staff talk about the about me and the other patients;
we were referred to by our diagnosis, not our names.
Some were called the COPD'ers or the one in the fracture room...,
we were not even the patient with COPD or the person that sustained a fracture.
There is a distinction; their is a difference between people and their diseases.
It makes a difference as to how we are treated
It depersonalizes us if we are treated as a disease or task to be completed.
It creates distance between us.
I am not a number or an illness;
I refuse to be defined by such.
And when I tell you what medications I'm on, don't prejudge me.
You don't know my history, or why I'm on antidepressants. 
Being on psych meds doesn't make me psychotic.
You have no idea if I have been raped or have been beaten.
You don't know if my child was recently a victim of a violent crime.
You don't know if my marriage is on the rocks or not.
You won't know these things if I don't trust you enough to tell you,
but I won't tell you, if I don't trust you.
I won't trust you, if you aren't listening.
So please don't pigeonhole me.
Don't ignore me.
Instead help me.
That is why I am here.
Just because I was an in-house patient on a medical unit a short while ago,
is not an excuse for a less than through exam.
My neurological status has changed,
but no one seems to see the way my mouth droops,
or how I search for words.
I was in too much pain to try to re-explain for 3rd or 4th time what was happening.
Why bother; no one was listening to me anyway?
I was sent home with no answers.
I was  discharged to the care of a neurologist
At the neurologists' it starts out the same:
Please hear me; don't just listen, but hear what I say. 
Hear what I don't say because I'm too afraid to ask. 
Listen to me.

Watch how my mouth moves or doesn't move.
Hear the slur in my speech.
Watch me search for the words that elude me,
See what is happening to me.
What is happening to me?
Look! Listen! See! Hear! Hear my pain.
Hear my history and record it accurately.
It makes a difference when it comes to a diagnosis.
But doctor kept mixing up the way things happened
and when I had the various tests.
I correct him; he didn't listen.
I told him repeatedly the correct sequence,
but he didn't change a thing.
When you are a physician, 
and can't keep the history straight because it is complicated, 
or you are tired from working one too many shifts, 
or having too many patients to keep things straight, 
it doesn't make you less of a professional to ask for clarification
that shows me you are more of one. 
It also shows me you are human.
Working in the medical community is a hard and often thankless task;
for the most part good care is given.
However, in the business of the work-week,
the true reasons we are at work can become forgotten.
The reason we are here is for the patient.
Trust me I know how hard it is.
I'm an RN by profession;
but when I was with you,
I was your patient.
Please remember the patient;
hear us and what we say,
what we may be too afraid to voice.

And when you find out your initial diagnosis was wrong, apologize.
Medicine isn't an exact science, as much as we would like to think it is.
It is an artso is listening.
So Please, Please Listen.


  1. This is how I feel with regard to my disability application. They refused the first time, telling me that my chronic pain could not be listed as something which restricts me in my daily life - I wish they would have to live in my body for just one week! >:(

  2. Barbara, you said they denied you application the first time; I hope by now you have been successful in an appeal. I totally agree with you; if those who make the decisions regarding disability would have to live one day in our bodies their would be no question about us receiving disability. I hope your pain is under better control now. Please keep me up to date with how you are doing.