How I Remind Myself of the Power I Have When I Feel Powerless as a Patient
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, since they remind me some doctors and nurses aren’t always the gods and angels I want them to be.
Just like you and me, they have good days and bad days. They’re 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’re crushed when our expectations aren’t met.
The following was one of my not so good experiences:
It was my eighth colonoscopy and my third at this particular hospital. There were so many patients that day! At any given time, a dozen of us were lying there in various stages of consciousness — all dehydrated and barely dressed. As one was rolled out, another came in to take their place.
Although 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 nurse asked me questions from behind a computer screen. I had trouble hearing her, and I couldn’t see her face. I had to repeat myself many times. Too many people were asking me too many questions, and 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 — while never even 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, and I told my story. The caller was apologetic and said he would certainly pass on the information. I don’t 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 from that day weighed on me. So I wrote a letter because I needed to let the hospital know that I didn’t feel cared for, I didn’t feel safe and that there were no gods or angels working that day.
My letter prompted a phone call from the unit manager, but it wasn’t the response I had hoped for — 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 had. Really? What part of “I didn’t feel cared for, I didn’t feel safe” did he not get? I hung up the phone totally bewildered, wondering why he wouldn’t admit I was right and his staff was wrong. The nerve!
The aforementioned events happened three years ago, and as I reflect back on them, my thinking has changed. If I didn’t 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’m not giving them a pass. But I am reminding myself that I can be empowered, and that I’m in charge of my body and 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’m 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 and called the whole thing off. Though such an action would’ve been frowned upon and the fall-out would have been beyond epic, it wouldn’t have been the end of the world. I take comfort in knowing that.
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Hi, I’m Kelly. Here are a few things you need to know. Over the years I have racked up quite a few medical issues, a craniotomy for a brain stem tumor in 1999 and a diagnosis of Crohn's disease turned my world upside down. I've been doing my best to navigate but the road has not always been a smooth one. Lately it seems managing my medical life has become my full time job! Hence the label: Professional Patient. In the spring of 2016, I was inspired to write my first blog post in response to something I read on The Mighty. After they published it, I felt compelled to keep writing. I wrote a few more entries for them and other sites before I decided to take the plunge start my own blog. And that was how “Write Down the Middle” was born. For me, writing is a healing process. I write from the middle-ground perspective of a situation. I can usually see the not-so-good side right away but if I stay with my feelings, I eventually see the value. Not in a "Pollyanna" way, more out of curiosity and a desire to understand. My blog is about how I experience life as a professional patient, it not a substitute for medical advice or treatment. If you find something helpful to you, I’d love to know and certainly wouldn’t mind a like and share. All I ask is that you do not claim my words as your own, and acknowledge the writer accordingly.
kelly-ellur