I originally wrote this for The Mighty in July 2016. I like to re-read it from time to time (especially when I am feeling overwhelmed by a new kink in my health) as a reminder that I am in the drivers seat; I am the one that gets to make the final call when it comes to my care.
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As a person living with chronic illness, I’ve had my
share of good and ‘not-so-good’ experiences with healthcare providers. While I
am ever so thankful for the good, I’ve come to appreciate the ‘not-so-good’ as
they remind me that doctors and nurses are not always the gods and angels we
want them to be. Just like you and me; they have good days and bad days. They
are human. Yet, we hold them to a higher standard; we want their best, 24/7
without exception. We want every touch to be reassuring, every word to be
gospel. And we are crushed when our expectations are not met.
The following describes one of my ‘not-so-good’
experiences and the twist I gave it:
It was my eighth colonoscopy, third at this
particular hospital. There were so many patients that day! At any given time, a
dozen of us laid there in various stages of consciousness, all dehydrated, and
barely dressed; as one was rolled out, another came in to take their place.
Though I had come prepared with a typed list of my
medications, the nurse thought I was on Remicade (the man in the bed next to me
was on Remicade.) When I corrected her, she gave me a ‘what’s the big deal’ eye
roll. Another asked me questions from behind a computer screen, I had trouble
hearing her and I could not see her face; I had to repeat myself many times. Too
many people were asking me too many questions, I felt rushed and nervous.
In the procedure room, two nurses passed items back
and forth over me and engaged in a conversation about which exercise was better
for weight loss, hot yoga or P90X. Never once looking down at me (or even
asking my opinion on the topic.) It was as if I wasn’t there; hell, it was as if they weren’t there! The fact that they
literally had my life in their hands seemed lost.
When I was deemed stable enough to be discharged, my
husband was sent to get the car. One employee was charged with the task of
escorting me and another patient down the hall, onto the elevator, and to the
entrance of the hospital to meet our rides. Neither of us was in wheelchairs;
we carried our belongings. What if one of us felt ill, passed
out, and fell?
The next day I received a follow up call; I told my
story. The caller was apologetic and said he would certainly pass on the
information. I do not doubt that he did yet I never heard back. Even though I
suffered no physical harm or injury during my medical procedure, the course of
events that day weighed on me. So I wrote a letter because I needed to let the
hospital know that “I did not feel cared
for, I did not feel safe”; that there were no gods or angels working that
day.
My letter prompted a phone call from the unit manager
but not the response I had hoped for, like maybe an expression of shock, an apology,
or a promise to do better next time. Nope. All he deduced from my letter was
that I was offended by the
conversation the nurses were having. Really?! What part of: “I
did not feel cared for, I did not feel safe”, did he not get? I hung up
the phone totally bewildered, wondering why he wouldn’t admit that I was right
and his staff was wrong. The nerve!
The aforementioned events happened several years ago
and as I reflect on them, my thinking has changed; if I did not feel safe,
wasn’t it on me just as much as it was on them? Sure, they could have done
better but so could have I.
Stay
with me; I am not giving a pass, I’m reminding myself that I can be empowered,
and that I am in charge of my body, my life. I can be my own angel.
I’ve come to realize that yes, while I have a right to expect quality healthcare, I
also have the responsibility to
define what that means for me. I want to feel free to ask questions, say I am
afraid, call the patient escort unacceptable and ask for something different. I
now know that at any time, right up until the very last moment before they
sedated me, I could have bailed, called the whole thing off. Though such an
action would’ve been frowned upon and the fall-out would have been beyond epic,
it would not have been the end of the world. I now take comfort in that
knowledge.
