By Pat Akerberg, Columnist
Like me, some of you may be hooked by a TV Series called Grey’s Anatomy. The setting is a Seattle teaching hospital. It’s a drama revolving around the surgical adventures and personal lives of a bright new surgical resident, Meredith Grey, her neurosurgeon husband, senior surgeons, and a group of Meredith’s fresh out of medical school counterparts.
The format begins with some type of traumatic emergency or compelling medical issue. During rounds, residents are expected to provide a technically astute bedside rundown of a patient’s status right in front of them, their attending surgeon, and other residents to demonstrate their medical competence with confident dispatch.
The patients are often fearful and overwhelmed as they glaze over in reaction to the stream of impersonal medical terminology washing over them like a tidal wave.
Attuned to the shortfalls of foreign medical jargon, the attending surgeon typically intervenes. Instead they slow down, address the patient by name, and compassionately translate the technical terms into everyday language.
They bridge the gap by talking with the patient vs. at them.
You can sense heightened tensions ease as patients respond positively to the difference in approach. They begin to understand, enabling them to make more informed decisions.
Using lay terms to describe and diagnose (a patient-centered approach) takes no more time or effort than using confusing text book terminology does (a disease centered approach).
Having experienced the difference between the two approaches firsthand, I urge medical practitioners to adopt the patient-centered one and simply “tell it like it is”.
When I first heard my initial diagnosis of trigeminal neuralgia, it was so rare I had never heard of it. When I asked my neurologist what it was and what caused it, his disease-centered explanation was to repeat the label and pass it off as just bad luck.
Fast forward to an intimidating brain surgery -- “micro-vascular decompression” -- offered as a potential fix. My neurosurgeon gave me a complex video to watch on-line.
When that surgery damaged my nerve leaving me in even worse pain, I was referred elsewhere to deal with the painful complication – “anesthesia dolorosa.” What?
Marinating in medical terminology all along, the onus was on me to find a way to figure out what they were saying, what was happening to me.
Through the internet, a patient-centered on-line support group, a compassionate and wise neurologist/research scientist, and a few years later, I am better equipped now to translate my “bad luck.”
But it’s just not enough for our doctors to understand what’s going on with us. We’ve been told by medical science for years that there’s a patient factor equally as important. It’s called a “mind-body” connection, proven to enhance more favorable outcomes.
So why hijack such an influential connection that holds such positive potential by using hard to understand impersonal terms and technical jargon?
Here’s a sampling of some of the disease-based medical terms that doctors used standing between my pain and my understanding of it: micro vascular decompression, iatrogenic, neuropathic pain syndrome, trigeminal deafferentation, anesthesia dolorosa, central nervous system sensitization, allodynia, hyperalgesia, dysthesias, intractable, refractory to treatment, paradoxical reaction, and progressive disorder, among others.
In patient-centered terms, here’s the translation that could have happened upfront to help me and save precious time and energy:
“I’m sorry that an unfortunate surgical complication occurred damaging your nerve. The numbness and increased pain mean your nervous system is reactively firing constant pain signals now.”
“Abnormal facial sensations will happen. Simple things that normally don’t hurt will, like talking, a kiss, or breeze. Things that normally hurt can hurt more.”
“Science and medicine have not yet caught up with how to help with this difficult to treat condition. However, research is ongoing for new medications and effective approaches. Other surgeries are not advisable.”
“Neuropathic pain can slowly progress and create other issues. I will do all I can to help you.”
Understanding the story the terminology tells hasn’t yielded any answers or relief for me yet, but my reality is no longer lost in the obscurity of a medically precise barrage of unsettling terms.
An important step towards reaching acceptance is being able to name and claim our stories before we can hope to move them in any other direction. I find that there is something empowering about unraveling my own story well enough to be able to name it and talk about my experience in my own terms.
It’s a way of taking our power back. The unnecessary gap is pulled closer together. The story doesn’t go away. It still stays with us, but differently.
We become the authors. Armed with greater understanding and hard-won wisdom, we can choose the words we use to connect with our doctors or others. We can edit things in or out, and decide what, how, and with whom we’ll share.
We can humanize what we’re experiencing so we’re back in the center where we belong -- no longer overshadowed by diagnostic, confusing, or impersonal terminology.
To really bridge the gap for a stronger mind-body connection, our physicians need to do more of the same in return.
Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.