EDITOR’S NOTE: This is the second of two columns written by Linda Joy Parsons on chronic illness. The first column was published Thursday.
With all due respect to your years of in-depth study, sacrifice, determination and dedication to the world of illness, I ask that you hear one thing I say today: Please allow your patients their own knowledge they have gleaned from their years of fact-gathering from within textbooks and their own bodies, from talking with others who share their conditions, from interacting with other medical professionals besides you, and from enduring medical tests and learning what those results mean. Please give us the attention and respect we are due, not only for enduring what is our lot, but also for learning from it.
Just as I ask that patients do their part to help you to help us, I ask that you do your part and allow your patient to help you.
A few weeks ago, I read my GI doctor’s “Impressions” section of my hospital discharge paperwork. A person I thought was a professional wrote that he thought I was a hypochondriac, exaggerating my pain, due to my years as a journalist, and my in-depth knowledge of medical terminology. This, without the appropriate testing that I had, just days later, through another doctor, who found that my pancreas was inflamed, giving me true, organic pain. But, because I could talk the lingo, which doctors should appreciate — it saves you much time and energy trying to explain simple concepts — he felt threatened. He reacted by marring my medical file with a “mental” diagnosis that, one, he wasn’t qualified to make, and two, was inaccurate but will follow me for the rest of my life, possibly affecting the quality of care I will now receive.
Please remember, as you are marking a patient’s forever file, “First and foremost, do no harm.” This was harm.
Please, doctors — do not be like this doctor, threatened by every patient who knows a bit about his or her condition. We are encouraged to learn about our illnesses, so that we may help you to help us. Please don’t execute us for trying only to help ourselves live as normal and healthy a life as we possibly can. As someone trained to help others, please appreciate our training to help ourselves.
You’ve been gone now for 13 years today. In writing this column and the one that appeared Thursday, I thought of you.
You always said I would write the great novel one day. I always responded that I didn’t write novels, remember?
In those days, I didn’t really know what I wrote that anyone would be interested in reading. Today, I hope it’s letters, because those with chronic illness need to hear how valuable they are, and how they need to take charge of their care, while their doctors need to hear that they need to let them.
It’s not a novel, Dad, but I think it’s just as valuable, if not more so.
I hope that you would have thought so, too.